Background: Caregivers experience significant strains as a result of navigating the complex mental health and/or addiction (MHA) system for their youth with MHA issues. We examined the characteristics of Ontario families with youth with MHA issues and their service needs.
Methods: A cross-sectional survey study investigated the characteristics and service needs of families with youth with MHA issues across the province of Ontario, Canada. A total of 840 caregivers were recruited.
Results: 259 participants (Mage = 45.94, SD = 7.11) identified as caregiving for at least one youth with MHA issues. The majority of the participants were female (70.7%), married (73.4%), and completed at least some college/Bachelor degree (59.1%). The mean age of youth was 16.72 years (SD = 5.33) and the most frequently reported diagnoses were Depression (30.1%), ADHD (27.8%) and Generalized Anxiety Disorder (21.2%). Regression results demonstrated that presently accessing services, presently seeking services, and higher levels of barriers MHA services were significantly predictive of identifying navigation as helpful for finding appropriate MHA services (2(7) = 28.69, p < .001, Nagelkerke R2 = .16). Furthermore, presently accessing services was significantly predictive of identifying case management as helpful (2(7) = 29.59, p < .001, Nagelkerke R2 = .156), and of identifying a primary healthcare provider as helpful (2(7) = 38.75, p < .001, Nagelkerke R2 = .197) for finding appropriate MHA services.
Conclusion: Identifying the nature and extent of youth MHA issues, service needs, and family preferences can inform the development of services that address families' needs and lend vital support for accessing services within a complex system.
Epidermolysis Bullosa (EB) is a group of rare genetic disorders resulting in skin fragility and other symptoms. Commissioned by DEBRA International and funded by DEBRA Norway, this evidence-bases guideline provides recommendations to optimise psychosocial wellbeing in EB.An international multidisciplinary panel of social and health care professionals (HCP) and people living with EB was formed. A systematic international literature review was conducted by the panel following the Scottish Intercollegiate Guidelines Network (SIGN) methodology. The resulting papers underwent systematic selection and critique processes. Included papers were allocated to 6 different outcome groups to allow data synthesis and exploration: quality of life, coping, family, wellbeing, access to HCP and pain. Based on the evidence in those papers, recommendations were made for individuals living with EB, family and caregivers and HCP working in the field.Few studies have investigated interventions and which factors lead to better outcomes, but general recommendations can be made. EB is a complex disease impacting enormously on every aspect of psychosocial life. People and families living with EB need access to multidisciplinary support, including psychological guidance, in order to improve quality of life and psychosocial wellbeing. Interventions should stimulate social participation to prevent isolation. People with EB and their families should be able to access a supportive network. HCP should be well supported and educated about the complexity of EB. They should work collaboratively with those around the individual with EB (e.g. schools, employers etc.) to provide psychosocial opportunity and care.Attention should be paid to the psychosocial impact of EB as well as physical needs. Directions for research are indicated.
Background: Cancer in children in Tanzania is a concerning health issue, yet there is a shortage of information about the experiences of the guardians of children who receive cancer treatment. Objective: To explore concerns and needs of support among guardians of children on cancer treatment in Dar es Salaam, Tanzania.
Method: Using a qualitative design, 3 focus group discussions were held with 22 guardians of children aged 9 to 17 years. Guardians were recruited from Muhimbili National Hospital, Dar es Salaam, where their children were receiving cancer treatment. Data were analyzed using thematic content analysis.
Results: Guardians experienced several issues during the initial stages of their child's cancer treatment, including the process of seeking a diagnosis, and experiences with care at the peripheral (regional) hospitals and national hospital. They also shared what they felt would lessen their difficult experiences. Seven themes emerged in this study: financial concerns, emotional concerns, barriers to cancer care, need for improved cancer care, need for information, need for tangible support, and gratitude and hope.
Conclusion: Guardians of children with cancer experience challenges during initial stages when seeking a diagnosis and have concerns and needs related to cancer care and treatment. Implications for practice: Improvements are needed regarding care at regional hospitals, the cancer diagnosis, and the recognition of early signs of cancer and quick referral to diagnostic centers, compassionate caring behaviors by healthcare workers, budgetary support from the government to meet the medication supply demands, and meeting stakeholders' support needs.
Background: Little is known about the provision of care coordination to children with medical complexity (CMC) and their families in Japan. The aim of this study was to describe provision of care coordination and explore the factors associated with quality of care coordination for Japanese CMC and their families.
Methods: We used an exploratory cross-sectional study design. Participants were recruited at a children's hospital located in one prefecture, Japan. Primary caregivers raising children aged between <1 and 20 years and receiving reimbursements for their home-based medical care at a children's hospital were eligible to participants in this study. The study examined the relationship between parents' ratings of care coordination as 'adequate,' 'inadequate' or 'not received' and characteristics of children, parents, and families.
Results: Ninety-nine parents caring for CMC were included in the analysis. Of those, 22.2% reported their child had a care coordinator. Caregivers were divided into three groups depending on the quality of care coordination: Group 1 reported adequate care coordination; Group 2 reported inadequate care coordination; and Group 3 had no need for care coordination. We compared the socio-demographics of children, parents and families, their service use and the health-related quality of life (HR-QOL) and caregiver burden scores of parents across the three groups. The parents' free time, access to timely care for children and service satisfaction were positively associated with adequate care coordination for CMC and their families.
Conclusions: Providing adequate care coordination for CMC and their families is essential for access to timely services and more positive psychological health of parents. High quality care coordination for CMC and their families is urgently needed in Japan.
Recent studies suggest the efficacy of family-based treatment (FBT) among youth with anorexia nervosa (AN) in intensive treatment settings. This study aimed to assess weight outcomes in youth who received an FBT intervention while hospitalized for medical complications of AN. Parental self-efficacy among participating caregivers was also measured. Post-discharge weights of 49 participants were compared with weights of 44 youth who were hospitalized prior to the provision of the FBT intervention. Youth who received the FBT intervention gained significantly more weight than youth in the retrospective treatment as usual group at 3 and 6 months following discharge. FBT youth were 2.84 times more likely than retrospective treatment as usual youth to achieve at least 95% of treatment goal weight at 6 months post-discharge. Finally, parental self-efficacy significantly increased in caregivers who participated in the FBT intervention. Findings provided preliminary support for the provision of FBT to medically hospitalized youth with AN.
Aim: Feeding problems have been described in young children with oesophageal atresia (OA). The primary aim of this study was to determine the specific concerns of parents and carers of infants and young children with OA regarding introducing solids and moving up to family foods.
Methods: A questionnaire was developed for parents and carers of infants and children with OA, aged 12 months to 6 years. Questionnaires were completed by 20 parents attending a multidisciplinary OA clinic between June 2016 and June 2017. Demographics and parental concern regarding feeding milestones were collected. The Montreal Children's Hospital Feeding Scale was completed.
Results: The majority of children (95%) had type C OA. Eleven (55%) parents agreed/strongly agreed that they were concerned about their child's feeding prior to the introduction of solids and about moving to more textured solids. The most common concern was choking and food impaction for both time points. Twelve (60%) parents agreed/strongly agreed that the majority of mealtimes in their child's first 1-2 years of life were stressful. Thirteen (65%) parents reported avoiding particular foods due to their child's OA. The majority of children (n = 17) had no feeding difficulty according to an objective scale, and the rest had minor difficulty.
Conclusions: Parental concern around feeding still exists in infants and children without a severe feeding difficulty. Multidisciplinary involvement, including a dietitian and speech pathologist, from an early age is important for infants and children with OA.
Background: Children with inflammatory bowel diseases (IBDs) require primary and gastrointestinal (GI) care, but little is known about patient and family preferences for care receipt. We aimed to understand caregiver perceptions of current healthcare quality, describe barriers to receiving healthcare, and elicit caregiver and adolescent preferences for how comprehensive care ideally would be delivered.
Methods: This was an anonymous survey of caregivers of 2- to 17-year olds with IBD and adolescents with IBD aged 13-17 years at a large, free-standing children's hospital. Surveys assessed patient medical history, family demographics, perceptions of health care quality and delivery, barriers to primary and GI care, and preferences for optimal care delivery.
Results: Two hundred and seventeen caregivers and 140 adolescents were recruited, 214 caregivers and 133 adolescents consented/assented, and 160 caregivers and 84 adolescents completed the survey (75% and 60% response rate, respectively). Mean patient age was 14 years (SD = 3); 51% male; 79% Crohn's disease, 16% ulcerative colitis, and 4% indeterminate colitis. Caregivers were primarily female (86%), Caucasian (94%), and living in a 2-caregiver household (79%). Most caregivers reported that their child's primary care physician (PCP) and GI doctor oversaw their primary care (71%) and their IBD care (94%), respectively. Caregivers were satisfied with communication with their PCP and GI providers (>90%) but did not know how well they communicated with one another (54%). Barriers to primary and GI care varied, and few caregivers (6%) reported unmet healthcare needs. Caregivers and adolescents saw PCPs and GI doctors having important roles in comprehensive care, though specific preferences for care delivery differed.
Conclusion: Caregivers and adolescent perspectives are essential to developing family-centered care models for children with IBD.
Objectives: Describe how parents prioritize parenting tasks and goals for their seriously ill and healthy children Illustrate how the process of trading-off one child's needs to meet those of another can contribute to parents' distress in serious pediatric illness.
Importance: Nearly two-thirds of children requiring palliative care services have siblings, thus parents must consider their children's various needs. Exploring parenting in serious pediatric illness and palliative care provides insight into parents' challenges and sources of distress, as well as opportunities for support.
Objective(s): The objective of this study was to describe parenting seriously ill children and their healthy siblings.
Method(s): Concurrent, cross-sectional, mixedmethods study to describe challenges parents face prioritizing tasks and goals for each child with qualitative data, compare parents' tasks and goals for seriously ill children and healthy siblings with quantitative data using a discrete choice experiment of parenting attributes, and describe parenting in terms of the process of prioritizing tasks and goals for all children in the family.
Results: Participants included 31 parents of seriously ill children who have healthy siblings and were admitted to a children's hospital. Qualitative interviews revealed how parents managed children's needs and their perceptions of the toll it takes. Quantitative data revealed parents prioritized ''making sure my child feels loved'' highest for ill and healthy children. Other goals for healthy siblings focused on maintaining emotional connection and regularity within the family and for ill children focused on illness management. Mixed methods analysis revealed parents engaged in a process of decision-making and tradingoff competing demands by considering needs which ultimately transformed the meaning of parenting.
Conclusion(s): Parental attempts to balance family needs may prompt them to trade-off one child's needs in order to meet those of another, even if this does not align with their parenting goals or perceived duties. This discrepancy may lead parents to believe they are not fulfilling their definition of ''being a good parent.'' Impact. Without understanding the various duties among which parents feel pulled to fulfill, providers may have an incomplete picture of family life. Future research can examine trade-offs and associated effects and how to support parent problem-solving and decision-making around trade-offs.
Objectives: The aim of this study was to investigate parent learning and support needs related to hearing aid management for young children, and factors that influence parent-reported hours of hearing aid use.
Design: A cross-sectional survey design was used to collect survey data in seven states. The child's primary caregiver completed a demographic form, a questionnaire to explore parent learning and support needs as well as their challenges with hearing aid use, and the patient health questionnaire to identify symptoms of depression. Three hundred and eighteen parents completed the questionnaires.
Results: Responses were analyzed for 318 parents of children (M = 23.15 months; SD = 10.43; range: 3 to 51) who had been wearing hearing aids (M = 15.52; SD = 10.11; range: <1 to 50 months). Even though the majority of parents reported receiving the educational support queried, approximately one-third wanted more information on a variety of topics such as loaner hearing aids, what their child can/cannot hear, financial assistance, how to meet other parents, how to do basic hearing aid maintenance, and how to keep the hearing aids on their child. The most frequently reported challenges that interfered with hearing aid use (rated often or always) were child activities, child not wanting to wear the hearing aids, and fear of losing or damaging the hearing aids. Forty-two percent of parents reported that, on good days, their child used hearing aids all waking hours. Multiple regression was used to compare the effect on parent-reported typical hours of hearing aid use based on good days for the variables of (1) presence of depressive symptoms for the parent, (2) child age, (3) family income, (4) primary caregiver education level, (5) presence of additional disabilities for the child, (6) degree of hearing loss, and (7) length of time since the child was fitted with hearing aids. There were statistically significantly fewer hours of reported hearing aid use when parents reported mild to severe symptoms of depression, lower income, less education level, and when children had mild hearing loss or additional disabilities.
Conclusion: Although parents reported overall that their needs for hearing aid education and support had generally been met, there were important suggestions for how audiologists and other service providers could better meet parent needs. Hearing aid use for young children was variable and influenced by a variety of factors. Understanding parent experiences and challenges can help audiologists more effectively focus support. Audiologists are more likely to meet the needs of families if they take care to provide access to thorough and comprehensive education and ongoing support that is tailored to address the unique needs of individual families.
Purpose: Awareness of Hirschsprung's-associated enterocolitis (HAEC) among patient's families and medical staff can lead to prompt recognition of symptoms and earlier implementation of management. We designed an HAEC medical alert card to raise awareness of HAEC among medical staff and carers of children with Hirschsprung's disease (HD). Our aim was to investigate parental opinion on the utility of this tool.; Methods: All patients diagnosed with HD in two institutions over a period of 14 years received an HAEC alert card and were invited to answer a 1-year follow-up structured questionnaire.
Results: A total of 123 patients received an HAEC card. The response rate for the follow-up questionnaire was 62% (n = 76). The majority 96% (n = 73) of the responders considered the card useful. A total of 89% (n = 68) of patients or parents stated that they carry the card with them, while 39% (n = 30) of them have used it on 57 occasions. The majority (83%; n = 25) of these declared that, when presented, the card increased awareness among medical staff and on 53% (n = 16) occasions prompted contact with the tertiary centre.
Conclusion: The HAEC medical card was found useful by most parents of HD patients. This tool increased awareness of HAEC and improved communication between peripheral hospitals and tertiary paediatric institutions. Therefore, we feel the HAEC alert card may be used in institutions with high HD addressability.
Background: Nigeria has the highest burden of paediatric HIV infection, and the success of control efforts in the country is crucial to the global control of the HIV epidemic. However, defaults from schedules of care pose a threat to paediatric HIV control in Nigeria. This study was conducted in a pioneer facility for the implementation of the National HIV Prevention and Treatment Programmes.
Objective: The objective of this study was to explore factors that facilitate adherence to clinic appointments from perspectives of child caregivers and service providers.; Methods: This is a qualitative study using in-depth, face-to-face interviews conducted in 2016. Thirty-five participants were purposely sampled to comprise types of caregivers of HIV-exposed/infected children receiving care and from categories of service providers. The interviews were audio recorded, transcribed, thematically analysed and presented using a socioecological model.
Results: The themes that emerged from participants' narratives included advanced education, affluence and residing close to the clinic at the intrapersonal level. Stable family dynamics and support, HIV status disclosure and being a biologic parent or grandparent as caregiver emerged at the interpersonal level. At the community level, disclosure and support were identified, while at the health facility level, positive staff attitude, quality of healthcare and peer support group influence were factors identified to facilitate regular clinic attendance.
Conclusion: The factors that enable retention of children in care are multidimensional and intricately connected. Programme improvement initiatives should include regular assessment of clients' perspectives to inform implementation of strategies that could reinforce caregiver confidence in the health system.
Objectives: The transition from hospital to home is a period of risk, particularly for children with medical complexity. Our aim was to identify and address discharge challenges through execution of postdischarge phone calls.
Methods: In this prospective study, we designed and executed a postdischarge phone call for patients discharged from an inpatient complex care team between May and November 2018. The call included dichotomous and open-ended questions to identify challenges regarding health status, follow-up appointments, medications, home nursing, medical supplies and/or equipment, and discharge instructions. These were recorded in the electronic health record. Details regarding identified challenges and corrective actions were categorized by 2 reviewers and adjudicated by a third reviewer if disagreement occurred.
Results: Descriptive statistics were used to summarize these findings. Sixty-seven phone calls were completed within 1 week of discharge. Two-thirds of calls identified at least 1 challenge, and more than one-third of calls identified 2 or more challenges for a total of 90 challenges. The most common challenges involved health status (26.7%), follow-up appointments (21.1%), and medications (20%). The majority of challenges were addressed by either caregivers or the multidisciplinary team, with the exception of home nursing challenges.
Conclusions: Discharge challenges were commonly identified by caregivers of children with medical complexity. The majority of postdischarge challenges were addressed, with some addressed by families themselves. These results can inform health care providers about challenges to anticipate and suggest future interventions to mitigate anticipated challenges for a safe discharge and transition of care for these at-risk patients.
Hemophilia is a complex condition to manage, especially for parents to newly diagnosed children. This grounded theory study explores parents’ learning processes and illness management in daily life during the first year after the start of their child’s treatment. Using a longitudinal qualitative design, eight parents of four children were interviewed repeatedly during 12 to 14 months. The core category, reaching independence through forced learning, reflected the parents’ learning process and their experiences of the challenges during the first year after start of treatment. Incentives for learning were characterized by a longing to reach independence and regain control of one’s life situation. The emerging key incentive for learning was a desire to become independent of health care professionals. Early home treatment reduced the impact of the illness, and by supporting parents in different ways during the learning process, health care professionals can promote the parents’ trajectory toward independency.
COVID-19 has become pandemic [[1]] and many government decrees have declared restrictive measures in order to prevent its wider spread. In this situation the handling of young children with special needs such as autism spectrum condition (ASC) could be challenging for families and caregivers. Shared Video Game and/or Internet Sessions with Parents Video games and the internet are extremely attractive for children with ASC but they could become an absorbent interest [[12]], especially in this period when children are called to stay at home.
Objectives: Families describe decision-making about gastrostomy tube (g-tube) placement as challenging. We measured caregiver decisional conflict before and after initial g-tube consultation to evaluate the potential benefit of a decision aid and feasibility in testing it.;
Methods: Families presenting for initial consultation about g-tube placement completed the decisional conflict scale (DCS) at 1 or 2 of 3 time points: before consultation, after consultation, and after viewing a video. The decision support consultation was a 2-hour structured meeting with a pediatric hospitalist, nurse practitioner, and dietitian that was focused on clarifying the indication, feasibility, safety, and family values around tube placement. The video described decision-making and lived experiences of families with tube feeding.
Results: We measured the decisional conflict of 61 caregivers. Preconsultation decisional conflict scores were high (mean = 38.7), but there was substantial variation between families (SD = 19.4). Baseline scores did not vary between clinically relevant subgroups. Postconsultation DCS scores were lower (17.9 and SD = 13.5 for consult alone; 12.7 and SD = 13.2 for consult with video). Three caregivers (7.7%) of families had residual decisional conflict scores >37.5, the threshold conventionally associated with decision delay.
Conclusions: Measuring decisional conflict among caregivers deciding about pediatric g-tube is feasible during the clinical encounter. Residual decisional conflict after our institution's current decision support consultation model (with or without an additional video) was low, so development of an additional structured decision aid is not warranted. Further study of preconsult DCS variability across different clinical subgroups may help identify families benefiting from additional decisional support.
Objectives: To investigate variation in caregiver preferences for their child's attention-deficit/hyperactivity disorder (ADHD) care and to determine if their stated preferences align with current care management.
Methods: Caregivers of a child aged 4-14 years and in care for ADHD were recruited from pediatric outpatient clinics and advocacy groups across the state of Maryland. Participants completed a survey collecting demographics, the child's treatment, and caregiver preferences-elicited using a best-worst scaling experiment (case 2). Latent class analysis was used to identify distinct preference segments and bivariate analyses were used to compare the association between segment membership with what the child was currently receiving for their ADHD.
Results: Participants (n = 184) were predominantly White (68%) and the child's mother (84%). Most children had ADHD for 2 or more years (79%). Caregiver preferences were distinguished by two segments: continuous medication (36%) and minimal medication (64%). The two groups had very different preferences for when medication was administered (p < 0.001), but they had similar preferences for provider-oriented and non-medication interventions (p > 0.05 for the caregiver behavior training, provider communication, provider specialty, and out-of-pocket costs). One third of the sample did not receive the preferred individualized education program and 42% of the minimal medication group reported using medication 7 days a week all year round.
Conclusions: Although behavior management training and school accommodations aspects of an ADHD care plan are more important to caregivers than evidence-based medication, fewer families had access to educational accommodations. Further research is needed to clarify how stated preferences for care align with treatments used in actual practice settings.
Introduction: Health systems offer access to unscheduled care through numerous routes; however, it is typically provided by general practitioners (GPs), by emergency medicine doctors in in emergency departments (EDs) and by GPs in out-of-hours GP services such as practitioner cooperatives. Unscheduled healthcare constitutes a substantial portion of healthcare delivery. A systematic review was conducted to establish the factors that influence parents' decision making when seeking unscheduled healthcare for their children. The systematic review question was "What are the factors that influence the decision making of parents and families seeking unscheduled paediatric healthcare?"
Method: Five databases (CINAHL, PubMed, SCOPUS, PsycInfo, EconLit) and four grey literature databases (Proquest, Lenus, OpenGrey, Google Scholar) were searched. The titles and abstracts of 3746 articles were screened and full-text screening was performed on 177 of these articles. Fifty-six papers were selected for inclusion in the review. Data relating to different types of unscheduled health services (namely primary care, the emergency department and out-of-hours services) were extracted from these articles. A narrative approach was used to synthesise the extracted data.
Results: Several factors were identified as influencing parental preferences and decision making when seeking unscheduled healthcare for their children. A number of the included studies identified pre-disposing factors such as race, ethnicity and socioeconomic status (SES) as impacting the healthcare-seeking behaviour of parents. Unscheduled healthcare use was often initiated by the parent's perception that the child's condition was urgent and their need for reassurance. The choice of unscheduled service was influenced by a myriad of factors such as: waiting times, availability of GP appointments, location of the ED, and the relationship that the parent or caregiver had with their GP.
Conclusion: Policy and planning initiatives do not always reflect how patients negotiate the health system as a single entity with numerous entry points. Altering patients' behaviour through public health initiatives that seek to improve, for instance, health literacy or reducing emergency hospital admissions through preventative primary care requires an understanding of the relative importance of factors that influence behaviour and decision making, and the interactions between these factors.
Aims and objectives: To provide an operational definition of family‐centred care as it applies to hospitalised children. The objective was to provide clarification of the concept by comprehensively analysing the evidence.
Background: Terms associated with family‐centred care include partnership‐in‐care, negotiated care, parental participation/involvement in care, care‐by‐parent and child‐centred care. The absence of a universally accepted definition contributes to its inconsistent implementation.
Design and Methods: Concept analysis is acknowledged as a form of inquiry to develop the knowledge base of nursing. Rodgers' evolutionary approach to concept analysis was used as a guiding framework. The systematic literature search yielded 30 theoretical papers; the results are outlined on a PRISMA flow diagram.
Results: Surrogate terms identified include partnership‐in‐care, negotiated care and parent participation. Parental participation in care, the development of respectful and trusting partnerships, information sharing and all family members as care recipients were identified as attributes to family‐centred care. There is limited evidence that family‐centred care enhances the child's, parents' and families' experience of hospitalisation and is associated with reduced anxiety for parents.
Conclusion: There is a lack of attention to cultural and societal changes, which impact on those receiving and delivering care. While we know that family‐centred care is widely endorsed and enhances well‐being, there is a lack of empirical evidence about the impact on health outcomes for children. While children's nurses have been applying some elements of family‐centred care to their clinical practice for decades, the concept continues to evolve.Relevance to clinical practiceFurther research examining the effects of family‐centred care for children, their families, healthcare professionals and healthcare organisations reflecting cultural diversity and norms must be conducted. This research should include the effects of family‐centred care on parents caring for their child in hospital, how family‐centred care supports parents to make healthcare decisions and the outcomes of family‐centred care for children and families.
Objectives: Describe the advance care planning communication preferences of children and adolescents and young adults (AYAs) with serious illness and their families. Describe multidisciplinary clinicians' current approach to advance care planning communication as well as perceived facilitators and barriers to initiating advance care planning discussions with AYAs and parents of children with serious illness. Discuss opportunities for further research to improve advance care planning communication for children and AYAs with serious illness and their families.
Importance: Parents desire earlier and more opportunities for advance care planning (ACP); however, large scale adoption of ACP for seriously ill children and AYAs remains unrealized. Little is known about the perceived facilitators and barriers of ACP discussions. Objective(s). To explore multidisciplinary clinician perceptions about typical approaches and perceived facilitators and barriers to ACP discussions.
Method(s): Semi-structured focus groups and individual interviews were conducted with multidisciplinary clinicians at two centers from December 2018-April 2019. An interdisciplinary three-person team then conducted thematic analysis incorporating both prefigured and emergent codes. Through an iterative process, a comprehensive coding structure was created, and each transcript coded independently by two coders with the third serving as an adjudicator, achieving high interrater reliability (kappa>0.85). Utilizing grounded theory and framework analysis, we present findings related to clinician perceptions about current approaches to ACP, and facilitators and barriers to ACP discussions.
Results: The sample included 35 stakeholders including physicians, nurses, psychosocial clinicians, and chaplains. Overall, providers valued facilitating ACP conversations with patients and their families and aimed to do so by supporting, empowering, and establishing trust. Providers prioritized understanding family dynamics, establishing goals of care, and delineating the overall disease trajectory in ACP discussions. However, various factors impeded ACP discussions. Primary clinician-level barriers included limited communication skills, prognostic uncertainty, competing demands, and conflicting messaging associated with multidisciplinary team care, while perceived patient and family-level barriers included poor prognostic awareness, avoidance, complex patient/family dynamics, and the influence of culture and religion. Clinicians identified alignment with the patient's primary team and normalization as facilitators of ACP discussions.
Conclusion(s): Despite ubiquitous recognition of the importance of ACP communication, various clinicianand parent-level barriers were identified that do not meet the needs of children and AYAs with serious illness and their families. Impact. Improvement strategies should prioritize serious illness communication interventions to facilitate ACP and ensure care is aligned with patient and family goals and values.
Care guidelines for Duchenne/Becker muscular dystrophy (DBMD) include recommendations for assessment of caregivers of patients with DBMD followed by proactive psychosocial interventions. To inform clinical assessment, this study described appraisals of psychosocial needs and caregiving facilitators of mothers of individuals with DBMD. Two hundred and five mothers completed an online survey. More than 50% endorsed unmet needs for managing uncertainty about the future and managing DBMD fears. Higher levels of unmet need were associated with less disease progression/earlier stage of DBMD (rho = -0.166 p = 0.02). Twenty-one percent regularly used respite care and 57% worried about allowing others to care for their child. Highly-endorsed care facilitators included partner relationships (63%), child's approach to life (59%), and family relationships (49%). Our findings highlight the importance of psychological and social support for caregivers. Starting when children are young, clinicians should assess caregivers' unmet psychological needs, particularly uncertainty and fear. Exploring needs and facilitators may allow clinics to target and customize interventions that build upon existing strengths and supports. Our findings have implications for efforts to promote early diagnosis and newborn screening, in that increased needs in mothers of younger children should be anticipated and built into counseling. Further research can assess whether and how unmet needs change as new therapies become available.
Newborn screening enabling early diagnosis of medium chain acyl-CoA dehydrogenase deficiency (MCADD) has dramatically improved health outcomes in children with MCADD. Achieving those outcomes depends on effective management by parents. Understanding parental management strategies and associated anxieties and concerns is needed to inform provision of appropriate care and support. Semistructured interviews were conducted with a purposive sample of parents of children aged 2 to 12 years. Thematic analysis identified two main themes. Managing dietary intake examined how parents managed day-to-day dietary intake to ensure adequate intake and protection of safe fasting intervals. Managing and preventing illness events explored parental experiences of managing illness events and their approach to preventing these events. Management strategies were characterized by caution and vigilance and influenced by a lack of confidence in others to manage the condition. The study identifies the need for increased awareness of the condition, particularly in relation to emergency treatment.
Purpose: This study examined caregiver perceptions of their child's language and literacy disorder as influenced by communications with their speech-language pathologist.
Method: The participants were 12 caregivers of 10 schoolaged children with language and literacy disorders. Employing qualitative methods, a collective case study approach was utilized in which the caregiver(s) of each child represented one case. The data came from semistructured interviews, codes emerged directly from the caregivers' responses during the interviews, and multiple coding passes using ATLAS.ti software were made until themes were evident. These themes were then further validated by conducting clinical file reviews and follow-up interviews with the caregivers.
Results: Caregivers' comments focused on the types of information received or not received, as well as the clarity of the information. This included information regarding their child's diagnosis, the long-term consequences of their child's disorder, and the connection between language and reading. Although caregivers were adept at describing their child's difficulties and therapy goals/objectives, their comments indicated that they struggled to understand their child's disorder in a way that was meaningful to them and their child.
Conclusions: The findings showed the value caregivers place on receiving clear and timely diagnostic information, as well as the complexity associated with caregivers' understanding of language and literacy disorders. The findings are discussed in terms of changes that could be made in clinical practice to better support children with language and literacy disorders and their families.
Background: Mothers of children undergoing hemodialysis encounter severe changes in their daily lives. It is of utmost importance to raise the awareness of treatment teams about the needs of these specific groups of mothers and different problems they may experience. The reason is that it can help health care professionals to support the mothers to fulfill their roles as the primary caregivers of such children.
Aim: This study aimed to identify basic needs in mothers of children undergoing hemodialysis.
Method: This meta-synthesis review of qualitative studies investigating the needs and experience of mothers whose children had kidney disease and published from January 1997 to October 2017. The articles were searched in four databases, including Web of Science, EMBASE, PubMed, and ProQuest. The search process was accomplished using the keywords "chronic kidney disease," "hemodialysis," "children," "mothers," "parents," "caregivers," "needs," "experiences," "perspectives," and "perceptions". Finally, 7 articles were chosen out of 567 papers and theses. The MAXQDA software was used to facilitate data management.
Results: The systematic review of the qualitative studies revealed three main themes, including the need for child care management skills, the need to maintain family cohesion, and the need for emotional-psychological support.
Implications for Practice: Mothers of children under hemodialysis should be considered as nursing clients. Accordingly, a multidisciplinary team can empower mothers to take care of the children under hemodialysis and preserve family coherence, as well as supporting them emotionally and psychologically.
Family members of children with disabilities have become more involved in their children's care and have adopted the role of primary caregiver. Due to the varying degrees of the condition, children with cerebral palsy (CP) often require greater involvement from their caregivers. Fifteen caregivers for children with CP residing in rural communities of the Western Cape, South Africa, were interviewed to explore the barriers and facilitators that they encountered. Thematic analysis revealed that some progress has been made in terms of service provision to caregivers from previously disadvantaged communities. However, a lot more needs to be done to help caregivers with children with CP. Social support, increased public awareness of the causes of disability, financial support by the government and access to disability friendly services, such as respite care, special education and transport-related services, have been identified as essential. It is important to take this into consideration when designing future interventions in order to provide caregivers with support and services necessary to make an impact.
Objectives: Prader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice.
Design and Setting: The project involved 10 medical centres of the Italian Network for Rare Diseases and PWS family associations and targeted underage and adult patients with PWS and their caregivers. Written interviews, composed by a sociodemographic survey and a narrative, were collected through the project's website. Three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. Narratives were analysed through NVivo software. Researchers discussed the results with the project's steering committee.
Participants: Twenty-one children and adolescents and 34 adults with PWS joined the project, as well as 138 caregivers. A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian.; Results: The analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants' future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present.
Conclusion: The project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. The findings indicated that a multiprofessional approach is fundamental to ensure adequate treatment and provided elements for its improvement.
Background: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families.
Aim: The aim of this study was to identify meaningful outcome domains of pediatric palliative care for children with severe neurological impairment and their families.
Design: A qualitative research design following a constructivist research paradigm was employed. Guided interviews were conducted with parents of children with life-limiting conditions and severe neurological impairment and professional caregivers. The data were analyzed using qualitative content analysis.; Setting: Overall, 10 cooperating pediatric palliative care institutions across Germany (outpatient and inpatient settings) aided in the recruitment of eligible parents and professional caregivers. A total of 11 interviews with 14 parents and 17 interviews with 20 professional caregivers were conducted.
Results: Six core outcome domains of pediatric palliative care for children with severe neurological impairment and their families were identified, namely (1) symptom control, (2) respite and support, (3) normalcy, (4) security, (5) empowerment, and (6) coping with the disease, each consisting of 1 to 13 individual aspects.
Conclusion: As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial.
There is a possibility that front-line services, particularly out-of-hours services, are not accessible to some parents. The aim of this service evaluation was to gain a better understanding about visits to one emergency department (ED) in the south of England by children and their parents or carers. The specific focus was to elucidate the reasons behind frequent ED attendance and indicate a potential redesign of services.Semi-structured interviews were conducted with 13 parents. The overarching theme emerging from the transcripts was parents’ complex decision-making to ensure their children’s healthcare needs were addressed. Parents highlighted the absence of consistent specialist community services to support them in caring for their children at home and to act as a resource for decision-making relating to their child’s care. Telephone and online information services such as NHS 111 were perceived as not always helpful. Parents were able to identify models of out-of-hours care which they saw as potentially more accessible and useful, such as the provision of a specialist paediatrician at GP surgeries. Further evaluation is necessary to make it possible to integrate parents’ views and needs into service design and delivery.
Background: Understanding perceptions of family caregivers' roles and responsibilities regarding their child with complex cardiac needs has potential to help care teams better support parents. Paternal experience has been under-explored in pediatric cardiac cohorts.;
Methods: Ten fathers of children undergoing cardiac surgery completed quantitative surveys on their knowledge needs and preferred format of communication. In face-to-face recorded interviews, they responded to open-ended questions about the definition of being a good father to a child with a complex cardiac condition, perceived paternal responsibilities, personal growth as a parent to a child with a complex heart condition, support needs, and recommendations to medical staff for paternal inclusion. Semantic content analysis was utilised. The study reports strictly followed COnsolidated criteria for REporting Qualitative research guidelines.
Results: The fathers reported high preference for knowledge about the child's heart condition, communication about the treatment plan, and desire for inclusion in the care of their child. Paternal role was defined thematically as: providing a supportive presence, being there, offering bonded insight, serving as strong provider, and acting as an informed advocate. The fathers revealed that their responsibilities sometimes conflicted as they strove to serve as an emotional and economic stabiliser for their family, while also wanting to be foundationally present for their child perioperatively.
Conclusion: This study provides insight into paternal experience and strategies for paternal inclusion. This summary of the self-defined experience of the fathers of pediatric cardiac patients offers constructive and specific advice for medical teams.
Mothers frequently fulfill the role of primary caregiver for children diagnosed with type 1 diabetes mellitus (T1DM). A T1DM diagnosis has a significant impact on the child and the wider family unit. The objective is to develop understanding of mothers' experiences caring for children diagnosed with T1DM in the cultural context of the Middle East to facilitate enhanced health service provision and support. This study used a qualitative design. Data were collected in individual semistructured interviews. Participants were mothers of Arabic descent and Muslim belief who had a child diagnosed with T1DM within the last 12 months. All mothers were registered at the health service where this research was conducted and resident in the United Arab Emirates at the time of this study. COREQ guidelines informed reporting of the research and findings. Participating mothers described initial reactions of shock and disbelief, followed by transition to near ordinary and near normal ( 85% normal ) family functioning. Family, culture, and faith emerged as critical supports in the whirlwind daily challenge of balancing the multiple demands and competing needs of the newly diagnosed child and the broader family. This study is the first of its kind from countries comprising the Gulf Cooperation Council. The findings provide insight into the challenges and support needs of mothers caring for children newly diagnosed with T1DM in an Arab Muslim context. The findings also provide a basis for enhancing health service support and suggest themes to inform further research.
Background: There has been a considerable endeavor to understand associated challenges of caregiving for a child with Autism Spectrum Disorders (ASDs) and to develop the necessary skills and approaches to assist parents of children with ASD. Different studies have been stressed the importance and need for parental involvement in the intervention process to increase positive impacts.
Methods: The process of caregiving and the associated challenges should be understood from different aspects to be able to facilitate parent involvement in intervention implementation. In a narrative literature review, ten selected reviews were considered and each review considered a special aspect of caregiving for an individual with ASD.
Results: Five main different factors in the available literature and reviews were considered as different themes that needed to be reconsidered in the studies on the impacts of caregiving for an individual with ASD.
Conclusions: It is concluded that to facilitate parental involvement in the intervention process, and to support caregivers of this group of individuals this review highlights the need for improved research in some proposed areas in this field and to bridge the gap between research and practice in this field.
In this qualitative study, 11 mothers of toddlers with autism participated in interviews to investigate how they perceived their roles and their competency to support toddlers' social learning in the context of both professional-implemented and parent-mediated early intervention models. The authors conducted a thematic analysis with multiple layers of independent coding. Four resulting themes highlighted challenges and contributors to parent self-efficacy. First, related to child characteristics, challenges were most prominent in the early period as participants adjusted to the diagnosis and reached to connect when social difficulties emerged. Second, having a peripheral role in early intervention challenged participants' confidence in their abilities, while receiving guidance to assume an active leadership role supported their sense of efficacy for facilitating toddlers' social learning. In a third theme, participants described specific and general examples of their expertise. Fourth, participants considered the transactional context of parent–child interaction and largely viewed their toddlers' independent wills, natures, and preferences as strengths upon which to build social engagement. The results support the need for early interventionists to promote and leverage family capacity for facilitating toddler learning as social challenges begin to appear for toddlers with autism. Parent-participatory early intervention practices are linked to parents' positive views of their own and their children's capabilities, beliefs that are associated with a range of parent and child outcomes. A qualitative study was conducted with 11 mothers of toddlers with autism who had experience with both professionally directed and parent-mediated early intervention. Participants were interviewed to explore their perspectives on their roles in relation to professionals and on how they viewed their ability to support their toddlers' social learning. An in-depth analysis of the transcribed interviews resulted in four themes. First, in the early stages, participants experienced challenges to their self-efficacy as they adjusted to the diagnosis and reached to connect with their child when social challenges emerged. Second, participants' views of their capability were stronger when they were provided with background knowledge enabling them to take the lead in guiding their children's learning than when professionals modeled predetermined intervention strategies for them to copy. Third, participants provided specific examples of their expertise to support their toddlers' social learning and viewed their close parent–child relationship and intimate knowledge of their children as valuable to the intervention. Fourth, participants voiced respect for their toddlers' natures and preferences, positioning them to build on their toddlers' strengths in everyday interactions. The results support the need for early intervention providers to promote and leverage family capacity for facilitating toddler learning as social challenges begin to appear for toddlers with autism.
Introduction: Mitochondrial disease is a spectrum of progressive genetic disorders resulting from dysfunctions of cellular metabolism in the mitochondria that greatly compromise the lives of affected individuals, who are often children.
Purpose: This study described the parent experiences unique to caring for a child with mitochondrial disease.; Methods: Internet surveys were made available to parents of children with a known mitochondrial disease. Surveys included demographic items and two questionnaires: Parent Experience of Child Illness (PECI) and Pediatric Inventory for Parents (PIP). Descriptive data were collected and correlations calculated to determine relationships between the parent experience and stress.
Results: The majority of participants (n=231) were mothers (95%) of children with mitochondrial disease around the age of 10 years (M=9.85). Elevated scores were found in parent adjustment illness-related concerns regarding Guilt and Worry (M=2.30, SD=.650), Sorrow and Anger (M=2.09, SD=.730), Long-term Uncertainty (M=2.56, SD=.690), and Emotional Resources (M=2.36, SD=.615). Scores indicated elevated feelings of stress in terms of both difficulty and frequency. Significant correlations (p<0.01) were found between parent illness-related concerns and parenting stress.
Conclusions: The results of this study suggest that parents of a child with mitochondrial disease feel a burden of responsibility that exceeds the typical caregiver role, see their child as fragile, and have concerns about their child's future. Identification of these concerns can assist nurses to better meet the needs of these parents and families.
Transition from pediatric to adult health care is a key milestone for children and young people (CYP) with chronic conditions. Family management (FM) and self-management are two important concepts during the process. This study aimed to explore the relationships between FM, self-management and transition readiness, and quality of life (QoL), and identify the potential CYP or family factors influencing the relationships. Data about FM, self-management and transition readiness, QoL, and various contextual factors were collected from 268 caregiver-child pairs. Structural equation modeling was used to examine the relationships between all variables. Results revealed that the easy aspects of FM mediated the relationships between the challenging aspects of FM, self-management and transition readiness, and QoL of CYP. Self-management and transition readiness mediated the relationship between the easy aspects of FM and QoL. Contextual factors indirectly influenced CYP's transition readiness and QoL through different aspects of FM. The results imply that to ensure the smooth transition from pediatric to adult health care and improve the CYP's QoL, strengthening CYP's independence and self-management competencies, combined with the support of the easy aspects of FM, seem to be useful strategies to increase CYP's readiness for transfer.
Introduction: 169 U.S. health systems now engage in OpenNotes: a movement to share clinical notes with patients. Few studies have focused on releasing notes during hospitalization, pediatrics, or parents/caregiver perspectives.
Methods: A focus group was conducted with eight parents with experience caring for a hospitalized child at a Midwest children's hospital. In the 2-hour session, parents were asked about their perspectives of the idea of sharing inpatient doctors' daily notes with parents during their child's hospitalization. Qualitative analysis was conducted to elicit themes related to the potential benefits and challenges of sharing inpatient notes.
Results: The most mentioned benefits included notes providing information as a reference for improved family education/understanding, communication/continuity, and advocacy/empowerment. Challenges were primarily related to note content, impaired communication and negative impact on families.
Conclusion: Participants identified multiple potential benefits of and challenges to sharing notes with parents during their child's hospitalization but also acknowledged the impact on healthcare professionals who work alongside them.
Aim: The care of a child with a life-limiting condition proves an emotional, physical and financial strain on the family that provides care for their child. Respite care is one way which allows carers to receive some relief and support in the context of this burden of care. The provision of and the requirements for respite in this context is poorly understood. This survey aims to describe the types of respite care families receive, the respite that they would ideally receive and the barriers that prevent this.
Methods: A cohort of 34 families cared for by the Paediatric Palliative Care Service in Queensland were approached to participate in a 20-question survey about their current respite preferences for future respite, with 20 surveys returned.
Results: Three of the families (15%) reported receiving no respite in the previous 12 months. Families who received respite received a combination of formal respite (a structured care provider) and informal respite (family or friends). Ten families (50%) reported that they would want the time of respite changed. Barriers to receiving adequate respite included complexity of care of the child, financial barriers and lack of a respite provider.
Conclusions: There is disparate provision of respite care with the main perceived barrier to attaining 'ideal respite' being the lack of a provider able to meet the complex care needs of their child. The provision of respite across diversity in geography; medical condition; social and cultural needs remains a challenge.
Objectives: Administration of oral corticosteroids at the onset of an upper respiratory tract infection (URTI) can be effective in the management of acute asthma exacerbations in children. This study was designed to identify barriers to parent-initiated implementation of clinical practice guideline-recommended use of oral corticosteroids for prophylaxis against severe asthma exacerbations in children.
Methods: Twenty-seven children who presented to BC Children's Hospital with URTI-induced asthma exacerbations were recruited. Parents received a filled prescription for a course of oral corticosteroids to be used at the earliest onset of their child's next URTI. Each family was contacted monthly over a 1-year period to inquire about URTI events, asthma symptoms, medication use and health care utilization. Focus groups were held with family physicians, paediatricians and parents; transcripts were analyzed qualitatively to identify key themes.
Results: Incidence of URTI events among participants was high (85%). Uptake of study medication was low; 44% used the medication as directed at their first URTI event. Eleven per cent of the patients who used the study medication also visited the emergency department for an exacerbation. Focus groups identified four main barriers to the effective use of parent-initiated oral corticosteroids: physician resistance and conflicting messages from providers; parent uncertainty about oral corticosteroids; multiple caregivers and relative ease of access to an emergency department.
Conclusion: We have identified key barriers to the effective use of parent-administered oral corticosteroids as an asthma management strategy and gained important insights regarding the research that is required to enhance the applicability of the strategy.
Objectives: Importance of HSB is increasing being recognized in understanding patient compliance, adequacy of followup, and seeking of alternative therapies (AT), which impact glycemic control. We looked at HSB of T1D caregivers.
Methods: 56 families: Child's T1D duration >1 y, were interviewed: 49 coming to a private clinic, 7 in government hospitals. SES was low in 20, upper/middle ("non-poor") in 36.
Results: After diagnosis, 24/56 (43%) had consulted 2-10 (mean 3.3) doctors - 6/20 (30%) poor families, 18/ 36 (50%) non-poor. Conversely 11: 7 poor (35%) and 4/36 (11%) non-poor families consulted no doctor for 1-3 y (mean 1.25 y) after diagnosis. easons given: "nothing new to learn, can manage dose adjustment ourselves": 8; "did not know we were supposed to follow up": 2; "shifted out of Delhi, couldn't find pediatric endocrinologist": 1. During this gap, there were 3 admissions for hyperglycemia; and 5 episodes of severe hypoglycemia managed at home. AT was tried by 35/56 (62%: Ayurveda by 8, Homeopathy 10, Naturopathy/Home remedies 17 [bitter gourd, neem juice, fenugreek, jamun]): 40% AT triers were poor, 60% non-poor. Reasons given: Own beliefs, experiences of other diabetics, television, internet, social groups, magazines and seminars. Reasons for choosing medical provider: Doctor treating or referred to during admission: 26; own financial status: 11, distance: 7, their experience and level of satisfaction with doctor: 12. Of clinic patients, 25/49 have regular followup, 16 irregular, and 8 had no visits in the past year. SES-wise, 18/36 (50%) non-poor, 7/20 (35%) poor families have regular followup.
Conclusions: Doctor shopping, erratic followup, trying AT, are common problems, and need to be proactively discussed with families to find solutions. HSB is only partly determined by SES: Non-poor families did somewhat more doctor shopping; poor families had more irregular followup.
This study aimed to show simulation improves confidence and competence in caregivers of children with a tracheostomy and examined the impact on patient emergency department visits and mortality. All participants received standard classroom training. One group also received training using simulation. Confidence at post-test was significantly greater in the simulation group. Correlation between post-test confidence and competency measures was not statistically significant. Mortality in family homes was almost five times higher for children whose caregivers did not participate in simulation. Simulation should be considered an important adjunct when preparing caregivers to respond to tracheostomy emergencies at home.
• Parents who received simulation training on emergency tracheostomy care showed a significantly greater level of confidence at post-test when compared with those who did not.
• The correlation between post-test confidence and competency measures was not statistically significant.
• Emergency department visits increased in the simulation group. These results suggest simulation may make caregivers more sensitive to their child's distress and more likely to use the emergency department than expected.
• Mortality related to tracheostomy emergencies in family homes was nearly 5 times higher for children whose caregivers did not participate in simulation.
Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family Carer Needs Assessment in carers of children, seeking to evaluate and improve its ability to capture their needs. This is a prospective pilot study of family carers of children with serious illness receiving care at a pediatric hospice. Thirty carers completed the self-assessment form. Additional feedback was sought inquiring about the appropriateness of questions and missing information relevant to the pediatric setting. All participants reported the assessment captured important information across multiple domains. Additional questions surrounding extra costs, home and school supports, as well as direct impacts of caregiving activities on pain and relationships were identified as important adaptations. The most common unmet needs in carers and care recipients were episodic relief from caregiving (n=17) and housing adaptation (n=17), respectively. Overall, a comprehensive assessment form is feasible in identifying the diverse needs of family carers of children. Future research should focus on using pediatric specific interRAI tools to guide improvements in policy and practice that can address unmet needs.
With regard to parents making communication approach decisions for their children with hearing loss, Crowe et al. (2014) suggested that key themes were: feasibility; sources of information; child characteristics; and, future opportunities. For children using cochlear implants (CI/s), the present study aimed to understand parental preferences regarding communication, the sources of information they used, and child language outcomes. Demographic and language data were available for 162 children using CI/s (mean age at CI 3.74 years; SD 3.83). Standard scores (SS) were reported for the PPVT-3/ PPVT-4. To enable inclusion of a more diverse group of children (including those with additional needs) data from the PPVT, PLS, CDI and RI-TLS were coded; receptive and expressive Categories of Linguistic Performance (CLIP; Dettman et al., 2017). Caregivers completed a one-off questionnaire; Parental Views about Communication (PVaC). Chi-square analyses explored the distribution and strength of caregiver responses to PVaC questions about the use of spoken language/Auslan within a Bilingual-Bicultural approach. Correlations between child/family characteristics, child language and parental preferences were explored. Parents’ decisions regarding communication with their children using CI/s were driven by multiple sources of information and influence. Changes in a child’s communication approach before and after hearing diagnosis and, following CIs were unrelated to child language outcomes or family characteristics but were influenced to an extent by parent values and child preferences. Of importance to the field, parents/caregivers require unbiased support from professionals to learn about their needs and to seek information (Young, 2002). Consistent with Watson et al. (2007) child preferences were influential on parental decision making; the present study demonstrated that child language and cognitive skills were also influential.
The diagnosis of childhood cancer not only affects the life of the child but also impacts the lives of the caregivers as well. This study aims to explore the caregiving stress, coping strategies, and support needs of mothers caring for children/adolescents with cancer during the active treatment phase. Individual semi-structured interviews were conducted, and two authors independently and thematically analyzed data. Caregiving mothers went through a process of emotional changes and a change in lifestyles when their children were diagnosed with cancer and undergoing treatments. It is important to ensure that caregiving mothers of children/adolescents with cancer are well supported by family, friends, and healthcare professionals. Healthcare professionals can develop informational booklets on cancer treatment protocols and work together with mothers. Parent support groups and plans for psychoeducational and spiritual care programs for mothers as forms of informational and emotional support may also be established.
Disability in a child not only affects the child but also presents socioeconomic and psychological impacts to the child's family. This study aims to describe the service needs of caregivers of children with disabilities in the state of Penang, Malaysia, and to determine the child and family characteristics predisposing to having more caregiver needs. A cross-sectional survey was conducted between February and June 2013 among caregivers of children aged 0-12 years with disabilities registered with the Penang Department of Social Welfare. Caregivers completed a self-administered mailed questionnaire containing a 20-item Caregiver Needs Scale (CNS). Each item in the CNS was rated on a 5-point Likert scale ranging from 'help not at all needed' to 'help extremely needed'. A total of 273 surveys were available for analysis (response rate 34.0%). The CNS contained four domains. The 'Help getting Information and Services for child' domain had the highest mean score (3.61, 95% CI: 3.46, 3.77) followed by 'Help with Finances' (3.29, 95% CI: 3.13, 3.45) and 'Help Coping with child' (3.11, 95% CI: 2.97, 3.25), while the 'Help getting Childcare' domain had the lowest mean score (2.30, 95% CI: 2.13, 2.47). Multivariate regression analysis identified caregivers of younger children and with more severe disability as having more caregiver needs in all domains. Besides that, caregivers of children with learning disability needed more help getting information and help with coping. Caregivers of children with learning and multiple disabilities needed more help getting childcare compared to children with other disability. Caregivers of Indian ethnicity, who had less than a tertiary education and who themselves had medical problems needed more help with finances. The findings on caregiver needs in this study can help inform planning of family support services for children with disabilities in Penang, Malaysia.
Introduction: With better medical care, patients with Duchenne muscular dystrophy (DMD) now live longer but face more complex medical and social needs. This study described the perceptions of DMD patients and their families of disease-specific palliative care services in Singapore.
Materials and Methods: A multicentre, cross-sectional study involving DMD patients and their families was carried out. Structured questionnaires were administered to them to collect data on their understanding of palliative care, health services accessed and desired by them and quality of life.
Results: A total of 30 pairs of DMD patients and their caregivers responded. Most patients were >13 years old (70%) and non-ambulant (86%). Most of them and their families (70%) were also not aware of palliative care and support services that were available to them in Singapore. Additionally, they perceived greater financial assistance and better transport services as resources that could better meet their care needs. The presence of scoliosis and need for ventilatory support were associated with lower quality of life in patients.
Conclusion: There is a need to improve awareness and provision of palliative care services for DMD patients in Singapore where discussion of end-of-life care is often considered taboo. Prevention and correction of scoliosis and provision of appropriate ventilatory support may improve quality of life in DMD patients.
Background: The influence of parental psychopathology and parental expectations on child well-being is well documented among typically developing populations. However, to date little research has examined the relationship among these factors in families of children with autism spectrum disorder (ASD). This study examines an observed relationship between parental psychopathology and expectations in families with children with ASD in the light of research in other populations.; Method: Twenty-four parents of children diagnosed with ASD were assessed for symptoms of psychopathology. Parents completed measures of child ASD severity as well as their expectations for possible outcomes of their child.
Results: Two main effects were found: higher parental psychopathology and ASD severity were both related to lower expectations. Interaction of ASD severity and parental psychopathology in relation to parent expectations was not observed.
Conclusion: These results emphasize the necessity of providing services not only to individuals diagnosed with ASD, but to caregivers as well.
The perspective of parents whose children are in residential care, has received only minor attention in the literature, despite evidence pointing out the value of parental involvement in care delivery for their child. Drawing upon in‐depth interviews with 12 parents of adolescent girls with multiple and complex needs in residential child welfare, this exploratory study describes parents' own needs and preferences with regard to care delivery. Parents wish: (a) to have a true partnership between parents and professionals (involvement), (b) to feel respected by professionals (respect), (c) to have the information and mandate necessary for decision‐making (agency), and (d) to receive consideration and (emotional) support, besides advice on how to handle the challenges their family faces (support). Their plea draws attention to an aspect of the dimension of "parent–caregiver partnership" in family‐centred residential care that deserves more emphasis. Indeed, being attentive to the needs of parents can contribute to the optimization of services for the most vulnerable families.
Given the vulnerability of the child psychiatric population, this study examined whether parenting a child referred to a child and adolescent psychiatry department leads to a higher risk of physical child abuse and if that risk is associated with a specific child psychopathology. The clinical sample consisted of caregivers with a six-to-11-year-old child who consulted child and adolescent psychiatry for a psychiatric assessment. The Dutch Child Abuse Potential Inventory (CAPI), socio-demographic data and child psychiatric diagnosis were collected from 59 caregivers of 59 children. Ten per cent of the sample obtained an Abuse scale score indicative of a potential risk for physically maltreating their child. Compared to a non-clinical sample, this study showed a two and a half times higher risk potential for physical child abuse in caregivers with children referred to child and adolescent psychiatry. The elevated risk was not associated with a specific child psychiatric diagnosis. The caregivers at risk were more unhappy and experienced more problems with their child, their family and with others. Results support the need for implementing a standard risk assessment for physical child abuse in a child psychiatric setting.
Caregiver support is vital in improving outcomes for child sexual abuse victims; however, the disclosure can significantly affect caregivers, thus impacting their ability to meet their children's needs. To maximize the support from caregivers, their own needs following disclosure need to be met. This study investigated the impact of child sexual abuse disclosure and associated needs as identified by caregivers. Sixty needs assessment forms were collected from families who accessed a parenting support pilot program run in New Zealand. These forms were completed by nonoffending caregivers during an assessment session with their counselor and consisted of both open-ended and Likert scale questions focusing on both the needs of the child and the family. Caregivers identified a range of impacts of the disclosure on their children, themselves, and other families members and the related support that may be needed. In particular, caregivers identified that they needed support with child behavior management and with their own coping. The findings suggest that interventions with caregivers following disclosure of child sexual abuse may be a valuable adjunct to therapy provided directly to the child.
Purpose: Limited research has been conducted on the non-medical out-of-pocket expenses (NOOPEs) incurred by families of children with chronic health conditions. The study objectives were to: 1) calculate the estimated NOOPEs incurred by families during hospitalization of their child, 2) identify predictors of high NOOPEs, and 3) assess the impact of the child's chronic health condition on the family's finances.
Design and Methods: Prospective observational study. Parents were included if their child was 3-20years old, had severe, non-ambulatory cerebral palsy (CP), and scheduled for hip or spine surgery. Parents reported all NOOPEs incurred during their child's hospitalization using the Family Expense Diary. Families completed the subscales of the Impact on Family Scale and the Assessment of Caregivers Experience with Neuromuscular Disease. Descriptive and univariate and multiple hierarchical regression models were used in the analysis.
Results: Fifty two parents participated. The total NOOPEs ranged from $193.00 to $7192.71 (M=$2001.92) per hospitalization representing an average of 4% of the family's annual earned income. Caregiver age (F=8.393, p<0.001), income (F=7.535, p<0.001), and distance traveled to the hospital (F=4.497, p=0.039) were significant predictors of high NOOPEs. The subscale scores indicated that a child's chronic health condition had a significant impact on family finances.
Conclusions and Practice Implications: Hospitalization is associated with numerous NOOPEs that create additional financial demands for families caring for a child with severe CP. NOOPEs should be addressed when preparing families for their children's planned hospital admissions, especially those families of CSHCN who experience significant financial impacts secondary to their children's care. (Copyright © 2017 Elsevier Inc. All rights reserved.)
Aim: The aim of this study was to evaluate the perceived health of children with epilepsy as experienced by the respondents to a questionnaire, to assess the sense of control over their child's epilepsy, and how much support they feel they received in various environments.
Methods: In this observational study, the data were collected using a questionnaire that was sent to families of children with epilepsy, who were treated at University Children's Hospital in Ljubljana, Slovenia from January to September 2016. The questionnaire consisted of 29 questions related to their epilepsy.
Results: There were 1198 patients who met the entry criteria for the study and were sent the questionnaire, of which 181 (15.1%) responded. The diagnosis of epilepsy was established in 912% of patients (8.8% were patients after a first unprovoked seizure), of which drug-resistant epilepsy was reported in 33.3%. Patients had epilepsy diagnosed fora mean of 4.9 +/- 4.4 years. Of all patients, 82.4% of patients were taking antiepileptic drugs (AEDs) at the time of inquiry. The longer the patient had epilepsy diagnosed, the lower was the perceived health (p = 0.004). Patients with pharmacoresistant epilepsy, those who had seizures, and those who were receiving AEDs had significantly lower scores of perceived health compared with those who did not (p < 0.001; p < 0.001; and p = 0.016, respectively). Of all responders, 79.8% responded that they feel that they have their child's condition under control. The child's condition was considered under control more often if the child had no reported seizures (p < 0.001) and if the family had enough support in the health system (p = 0.002) or psychological support (p = 0.005). Patients with pharmacoresistant epilepsy more often replied that they do not have enough support in the health system (p = 0.006).
Conclusions: Our study suggests that the presence of seizures, pharmacoresistant epilepsy, years of epilepsy diagnosis, and prescription of AEDs have a significant negative effect on the perceived health of children with epilepsy. Enhancement of the support families received in different environments can offer an opportunity to improve the sense of caregivers control over child's epilepsy. (C) 2020 Elsevier Inc. All rights reserved.
Background and Objective: Kidney transplantation offers greater life expectancy, quality of life and participation compared with dialysis, in children with end stage kidney disease. This study explores the perspectives and experiences of parents of children undergoing kidney transplantation, as the experiences of parents in the process of transplantation is not completely understood.
Methods: Face-to-face semi-structured interviews were conducted with parents of transplanted children across New Zealand. Data were analysed using thematic analysis to identify themes of participant experiences and perspectives.
Results: We interviewed 13 mothers and four fathers of the transplanted children. Four themes were identified: actively pursuing transplant (the urgency of transplant; needing to drive the transplantation process); lack of on-going support (needing access to specialists; feeling unprepared for demands of transplantation, and vulnerability of unmet emotional concerns), pressure on the family unit (strain of distance; disrupting parent team; added burden of parent as donor; financial stress) and constant concern for the future (living with enduring uncertainty; pressure of responsibility; apprehension of teenage years).
Conclusions: Parents of children need to play an active role in advocating and driving the transplantation process. Transplantation leads to parental role disruption, emotional and financial stress, and insecurity about the future for their child. These findings suggest the need for greater communication and transparency in the transplantation process with parents, improved emotional and financial support for families during and after transplantation, and explicit assistance for parental roles in families when a caregiver is the donor.
Aim: To identify the predictors of primary caregivers' stress in caring for in-home oxygen-dependent children by examining the association between their levels of stress, caregiver needs and social support.; Background: Increasing numbers of primary caregivers of oxygen-dependent children experience caregiving stress that warrants investigation.
Design: The study used a cross-sectional design with three psychometric scales - Modified-Parenting Stress Index, Caregiver Needs Scale and Social Support Index.
Methods: The data collected during 2010-2011 were from participants who were responsible for their child's care that included oxygen therapy for ≧6 hours/day; the children's ages ranged from 3 months-16 years. Descriptive statistics and multivariable linear regression were used.
Results: A total of 104 participants (M = 34, F = 70) were recruited, with an average age of 39·7 years. The average age of the oxygen-dependent children was 6·68 years and their daily use of oxygen averaged 11·39 hours. The caregivers' overall levels of stress were scored as high and information needs were scored as the highest. The most available support from family and friends was emotional support. Informational support was mostly received from health professionals, but both instrumental and emotional support were important. Levels of stress and caregiver needs were significantly correlated. Multivariable linear regression analyses identified three risk factors predicting stress, namely, the caregiver's poor health status, the child's male gender and the caregiver's greater financial need.
Conclusion: To support these caregivers, health professionals can maintain their health status and provide instrumental, emotional, informational and financial support. (© 2016 John Wiley & Sons Ltd.)
Children with autism spectrum disorder (ASD) and their families may benefit from the provision of additional supports in health care settings, particularly when preparing for and attending medical appointments. This review examined literature that describes experiences in medical care settings from the perspective of patients under age 18 with ASD and their caregivers. A scoping review was conducted to examine the experiences of children with ASD and their families in medical care settings. Twenty-nine studies meeting inclusion criteria were identified and reviewed. The review indicated a number of challenges (e.g., parent-reported problems in parent-provider communication and overwhelming environments) as well as factors that facilitate positive experiences (e.g., providing positive reinforcement and explaining exam steps) during medical appointments. Children with ASD and their families are faced with many challenges while receiving care in medical settings. The present review identified many challenges families face, as well as facilitators of positive experiences. Understanding the unique experiences of patients with ASD and their parents will help to improve experiences in medical care settings for children, caregivers, and health care providers.
This study uses Australian survey data to explore whether caring for children and young people with disabilities affects paid employment participation of fathers who identify as the secondary caregiver. More fathers in the study were in full-time employment than those in the general Australian population, but they worked fewer hours, often in jobs they did not enjoy or roles with less responsibility. Over one third of fathers reported that caring had impacted on their job opportunities or career progression, particularly those whose children had more severe disabilities. The financial costs of raising a child with disabilities and their caring obligations informed many of the decisions fathers made in relation to employment. Fixed hours of work, lack of understanding from their employer, an income tied to hours worked and staff resources were cited as reasons why almost half of the fathers felt they were unable to access flexible working conditions to assist with their child’s care. Self-employment was seen by many fathers as desirable, but the perceived increase in flexibility may be accompanied by an increase in work hours. Implications for paternal well-being are discussed, along with the lifelong implications of caring on employment and financial security for families in the Australian context.
To incorporate the perspectives and experiences of family caregivers of children with obesity, the KidFit Health and Wellness Clinic, a paediatric weight management programme, embedded feedback opportunities into various stages of programme development. Caregivers were eligible to participate if their children had completed initial 4-week group-based pilot programming or were currently receiving treatment in 10 or 12 week group-based programming. Data were collected through feedback session discussions, audio-recorded, transcribed verbatim and analysed thematically. In total, 6 caregivers participated in the pilot group feedback session and 32 caregivers participated in the structured group feedback sessions. Caregivers reported that healthy lifestyle strategies first communicated by clinic staff to children during group sessions provided expert validation and reinforcement when discussing similar messages at home. Caregivers reported feeling isolated and blamed for causing their children's obesity and appreciated the supportive forum that group-based programming provided for sharing experiences. Since experiences of blame and isolation can burden caregivers of children with obesity, paediatric weight management programmes might consider including peer support opportunities and discussion forums for ongoing social support in addition to education about lifestyle change.
As is the whole world, we are also fighting the coronavirus (COVID‐19) pandemic in Turkey, which complicates and affects all aspects of life. The pandemic can negatively psychosocially affect every segment of society. To successfully get through this pandemic, it is important to consider all individuals in society, including ourselves. Patients with Alzheimer's disease are considered vulnerable, more helpless; they do not have the capacity to make the right decisions and they need the care and help of someone else. The needs of relatives who provide care for these patients may have been forgotten during this pandemic.
Background and aim: Spouse carers of a person with dementia report feeling lonely and trapped in their role, lacking support and having no time to take care of their own health. In Sweden, the support available for family carers is not specialised to meet the needs of spouse carers of people with dementia. The aim of the study described in this paper was to explore spouse carers' experiences of caring for a partner with dementia, their everyday life as a couple and their support needs. Methods: Nine spouse carers of a partner with dementia living at home were recruited through a memory clinic and a dementia organisation. Semi-structured interviews were conducted with the participants, focusing on their experiences of providing care, their support needs in relation to their caring situation, their personal well-being and their marital relationship. The interviews were transcribed and underwent qualitative content analysis. Results: The analysis resulted in one overall theme Being 'alone' striving for belonging and adaption in a new reality, synthesized from four sub-themes: (1) Being in an unknown country ; (2) Longing for a place for me and us ; (3) Being a carer first and a person second ; and (4) Being alone in a relationship. Conclusions: The training of care professionals regarding the unique needs of spouse carers of people with dementia needs improvement, with education, in particular, focusing on their need to be considered as a person separate from being a carer and on the significance of the couple's relationship for their mutual well-being.
Background: Patients and caregivers face increasingly complex and unique challenges when they travel to distant hospitals for transplant care. They can find themselves in a strange city managing hospital stays and outpatient appointments, requiring lodging, food, transportation, financial assistance, and emotional support. Those unable to overcome these logistical challenges may lose access to lifesaving treatment. Transplant specific hospitality houses have emerged to support patients who travel long distances from home to seek care, though little is known about the impact of such programs. Can a transplant hospitality house impact opportunities for family-centered care, perceptions of physiological and physical security, and perceptions of belonging and esteem? Can their contributions also be linked to perceived positive health outcomes and what aspects of a transplant hospitality house are most significant for a patient's and caregiver's health journey? Design: One transplant hospitality house investigated these questions with 71 participating in focus groups or key stakeholder interviews: transplant patients and caregivers, transplant hospital social workers, volunteers, financial contributors, board members, and staff. Results: The findings suggest that while patients and caregivers were dependent and deeply grateful for the lodging and amenities that met their basic needs, it was the contact and support from other patients and caregivers at the transplant hospitality house that had the most profound positive impact on patient and family attitudes, outlooks, and perceived well-being.
This briefing looks at Black, Asian and Minority Ethnic (BAME) young carers and their specific and unique needs. BAME young carers have long been recognised as particularly vulnerable. The term BAME is inclusive of those who may have vastly different issues and vulnerabilities including within their own communities. For example, there are differences within Black, Minority Ethnic and many Asian families and communities. Asian communities themselves vary drastically also depending on their country of origin and time spent in the UK. Much of our research is focused on issues within Asian communities, predominantly South Asian, as that is the highest BAME demographic within our young carers’ services. The sheer breadth of different communities we work with is demonstrated in the chart below. Therefore, in this report the term BAME relates mostly to South Asian families.
The growth of life expectancy in Central Eastern Europe and increase in the number of older people in that region are the consequences of changes in the 1990s period, connected to transition from the communism into a market economy. Central Eastern Europe is already facing consequences of fast ageing and insufficient development of state health care and social services. Those result in gaps in the provision of end-of-life care and overburden of family caregivers. This essay addresses gaps in end-of-life care, showing the development of hospice-palliative care on one side, and highlighting main problems with long-term care on the other. There is scarce support for informal caregivers and lack of cooperation between health and social care. End-of-life care is over medicalized in hospice-palliative care and hardly existing in long-term care. Dying is more a social than medical event, and as such, it should be cared for by compassionate communities, encouraging cooperation of professionals with family caregivers and society. Unfortunately, to date, there is no adequate cooperation in social dimension of end-of-life care in most of Central Eastern Europe. The social dimension of end-of-life care has to be recognized and empowered with the health promoting palliative care and introduction of compassionate communities in Central Eastern Europe.
An individual and psychological emphasis has influenced practice and research on bereavement following informal care provision in the context of life-limiting illness. Consideration of the potential for bereavement to be shaped by intersecting social and structural inequities is needed; and should include an understanding of interactions with government institutions and social policy. This qualitative study employed interpretive description to explore the way in which palliative care workers and welfare sector workers perceive and approach experiences and needs of bereaved carers receiving government income support or housing assistance in Western Sydney, an area associated with recognised socioeconomic disadvantage. A total of 21 palliative care workers within a public health service and welfare workers from two government social welfare services participated in in-depth interviews. Data were analysed using framework analysis. Participants highlighted social welfare policy and related interactions that may impact bereavement, potentially related to financial, housing and employment precariousness. Personal, interpersonal and structural factors perceived to shape the navigation of welfare needs were explored, alongside needed professional and structural changes envisioned by workers. With limited forms of capital, vulnerably positioned carers may encounter difficulties that heighten their precariousness in bereavement. Transactional organisational cultures alongside health and welfare agencies that function in a siloed manner appear to contribute to structural burden for carers, following death due to life-limiting illness. Palliative care and welfare workers also associated elements of their work with bereaved carers with their own experiences of helplessness, frustration and distress. Findings point to a need for the development of interagency strategies in addition to policy underpinned by more nuanced understandings of vulnerability in bereavement, post-caring.
Objectives: To estimate the proportion of family caregivers assisting older adults during Medicare home health who have an identified need for activity-specific training and identify characteristics associated with caregiver training needs. Design: Nationally representative retrospective cohort study. Setting and Participants: 1758 (weighted n = 8,477,990) Medicare beneficiaries who participated in the National Health and Aging Trends Study (NHATS) and received Medicare-funded home health care between 2011 and 2016. Measures: Older adult and caregiving network characteristics before home health (sociodemographic factors, caregiver assistance, older adult health and function) were drawn from NHATS; characteristics during home health (family caregiver training needs, older adult health and function) were drawn from home health patient assessments. Weighted proportions of family caregivers with an identified need for activity-specific training were estimated. Weighted, multivariable logistic regressions modeled associations between older adult/caregiving network characteristics and family caregivers' identified activityspecific training needs during home health. Results: More than 1 in 3 (35.7%) family caregivers assisting older adults during Medicare home health had an identified training need with at least 1 caregiving activity. Rates of need for training varied widely, from 8.6% among caregivers helping with advocacy to 48.2% among caregivers helping with medical procedures. In weighted analyses that adjusted for older adults' health and function, family caregivers were less likely to have identified training needs when assisting older adults with ongoing disability or who received caregiver assistance before home health admission. Conclusions and Implications: Findings highlight the pervasiveness of family caregivers' training needs, particularly with medically oriented activities, and indicate that escalations in older adults' care needs are linked to caregiver training needs. Therefore, transitions of care may present critical opportunities to connect family caregivers with training resources.
Background: Due to the aging society the number of informal caregivers is growing. Most informal caregivers are women working as nurses within a health organization (also labeled as double-duty caregiver) and they have a high risk of developing mental and physical exhaustion. Until now little research attention has been paid to the expectations and needs of double duty caregivers and the role of self-management in managing private-work balance. Objective: The overall aim of this study was to investigate the expectations and needs of double duty caregivers in Netherlands, and to examine the meaning of self-management in managing work-life balance. Method: Different research methods have been applied in this exploratory study. Firstly, a scoping review has been conducted on the topics self-management and sustainable employability of double-duty caregivers using the search engines: CINAHL, MEDLINE, PubMed, and Google Scholar. Furthermore, a qualitative study has been conducted through focus groups with double duty caregivers. Results: Twenty studies that met the inclusion criteria (i.e., nurses with double duty caregiving tasks) could be identified. We found that double duty caregivers have different motivations for being a double duty caregiver based on internal and external expectations. Double duty caregiving causes a lot of mental and physical pressure for the caregiver. To be able to combine both duty's, double duty caregivers need flexibility and understanding from the workplace. Through two focus groups (N = 17) we found that social support from the workplace is not enough to be able to manage the situation. Self-management skills are important to be able to communicate effectively with the workplace and community care organizations about the kind of support needed. Also, health care organizations should offer the same support to double duty caregivers as any other informal caregiver. Discussion: Double-duty caregivers are at high risk of developing symptoms of overload and risk of reduced self-management quality and employability levels across time. Health care organizations and the double duty caregiver often wait too long to act instead of taking more preventive measures. Furthermore, community care organizations should dialog with double duty caregivers about their wishes concerning the division of caring tasks. This finding calls for special attention, with long-term solutions at both macro (health-care level), organizational (meso-level), and employee level (micro level).
No studies have included the experiences and needs of informal caregivers who are deaf, use American Sign Language (ASL), and care for a loved one with Alzheimer's disease or related dementias (ADRD). The CDC's BRFSS Caregiver Module and PROMIS-Deaf Profile measures were administered via an online bilingual English/ASL platform between October 2019 and March 2020. Out of 194 deaf adult signers who completed an online survey, 42 respondents (mean age = 66; SD = 12; 74% White) endorsed informally caring for someone with a medical condition. In this survey subsample of informal caregivers, more years of education was significantly associated with higher generic quality of life and higher deaf-specific quality of life. A smaller subset of informal deaf informal caregivers who were currently taking care of loved ones with ADRD were then invited to participate in a semi-structured interview. Among the 22 informal caregivers who were interviewed, there was a strong agreement among the participants who felt that their quality of life as informal caregivers was worse than hearing informal caregivers who took care of loved ones with ADRD. Findings highlight the importance of a call to action to address the needs of deaf informal ADRD caregivers.
Extract from Executive summary: Australians who care for people with a disability, illness, or a broader need often embody many of the qualities sought by universities. In providing unpaid labour to support family members and friends, carers typically demonstrate resilience, selflessness, and a commitment to societal health, wellbeing, and cohesion. Provision of this critical support is often required while simultaneously managing high demands on time and limited financial resources (ABS 2018a, 2018b). Young carers in particular have been identified as holding relatively low levels of education (Department of Social Services [DSS], 2019). The COVID-19 pandemic has only exacerbated the challenges for carers. Collectively, evidence suggests both a need and an opportunity for universities to develop specific policies to attract and support those who care for others.... Through our national survey, we found student carers were highly motivated to succeed in higher education. Student carers identified a range of skills developed through their caring roles that were beneficial to themselves and their peers at university. These skills include time management, empathy, compassion and patience, as well as specific expertise with relevance to areas of study, including nursing skills and knowledge of disabilities. Carers also improved the broader student experience by sharing different perspectives, advocating for students, and providing direct assistance with coursework. Despite these strengths, juggling caring and study produced considerable time pressure, financial hardship, and lower levels of wellbeing compared with their non-caring peers. Circumstances were often made more difficult by the rigidity of course structures and study requirements.... Another notable finding was that a quarter of student carers never disclosed their carer status to anyone at university. This trend leaves many student carers invisible and makes it more difficult to provide appropriate and timely support where required. Among the most common reasons for not disclosing carer status were never being asked and seeing no benefit to disclosure. It is likely some carers also feared being stigmatised and/or defined by their caring role. These findings highlight the importance of increasing awareness and understanding of carers within the university community.
Embracing CarersTM created the Carer Well-Being Index to determine the current and residual impacts of COVID-19 on unpaid carers, including its impact on their economic, physical and psychological well-being. While carers weren’t alone in experiencing 2020 as a highly emotional and unstable period, they faced unique pressures, demands and time commitments often overlooked by society. They must now navigate fast-changing care delivery models, learn new telehealth and technology, provide emotional support despite their own emotional needs, and handle increased responsibilities at home—all at once. Amid these rising responsibilities, many carers sacrifice their own health and well-being for the sake of people they love. They deal with emotional isolation. Financial strife hits hard as unemployment spikes and salaries are imperiled. Many lack the time to care for their own physical and emotional health. There are even more nuanced challenges when looking at women carers, younger, middle-aged and older carers, who encounter inequities. In taking a hard look at how the pandemic has affected the globe, carers have faced unprecedented challenges – they are undercounted, unheard and struggling. Now more than ever, governments, public entities, the private sector and all citizens have roles to play in addressing that problem. Carers should not have to face these hardships and inequities alone. They’re sacrificing for us, one by one. As a society, we can help them, together.
There is currently growing recognition of the complex care needs of patients with life-limiting conditions and their family members, prompting the need to revisit the goals of medicine. This Special Issue reflects a broad research agenda in the field of palliative and end-of-life care. A total of 16 papers of empirical studies and systematic review are included spanning five domains, namely, patient, caregiver, healthcare provider, policy, and methodology. The results generally suggest the merits of palliative care and reveal room for further improvement in palliative care education, manpower, infrastructure, and legal and policy frameworks.
Purpose/objective: The purpose of this study was to assess the frequency of unmet needs of carers among a convenience sample of carers, and the participant factors associated with unmet needs, to inform the development of interventions that will support a range of caregivers. The aims of this study were to: (1) assess the most frequently reported moderate-high unmet needs of caregivers; and (2) examine the age, gender, condition of the care recipient, and country variables associated with types of unmet needs reported by informal caregivers. Research method/design: An online cross-sectional survey among informal caregivers in English-speaking countries was conducted. Self-reported unmet needs were assessed using an unmet needs measure with the following five unmet needs domains: (1) Health information and support for care recipient; (2) Health service management; (3) Communication and relationship; (4) Self-care; and (5) Support services accessibility. Informal caregivers were asked "In the last month, what was your level of need for help with...", and the ten highest ranked moderate-high unmet needs presented as ranked proportions. Logistic regression modelling examined the factors associated with types of unmet needs. Results: Overall, 457 caregivers were included in the final analysis. Seven of the ten highest ranked unmet needs experienced by caregivers in the last month were in the Self-care domain, including "Reducing stress in your life" (74.1%). Significant associations were found between younger caregiver age (18–45 years) and reporting moderate-high unmet needs in Health Information and support for care recipient, Health service management, and Support services accessibility (all p's = <0.05). Conclusions/implications: Caregivers are not experiencing significant differences in unmet needs between countries and caree/care recipient conditions, suggesting that general interventions could be developed to support a range of caregivers across countries. Increased awareness of informal caregivers' unmet needs, particularly for younger caregivers, among health care providers may improve support provision to caregivers.
Unpaid carers provide critical support for people with health and social care needs. The majority of recipients of unpaid care are older parents or spouses and partners, and changes in the make-up of our population indicate that the number of dependent older people in the UK will increase by 113% by 2051.
Supporting those who provide unpaid care to older people is therefore hugely important, and evidence is needed on how best to do this. The support provided by carers is often physically and emotionally demanding, with consequences for carers’ own health and wellbeing.
In this work, PHE commissioned Newcastle University to:
To address these aims, a rapid review of existing evidence reviews (an ‘umbrella review’) was conducted, alongside analysis of data on carers (for any population) from the NHS England GP Patient Survey. The main findings are:
Tools
This report proposes a logic model as a tool for evaluating the impact of carer interventions.
It also includes ‘access enablers’ as important in ensuring that carers are connected with relevant services and interventions on offer. Social prescribing is one of these enablers.
Introduction. The paper presents findings from a study that investigated information needs of caregivers of Alzheimer's disease patients' in Croatia, a country in which health and social care systems for such persons are insufficiently developed. Special emphasis is put on the barriers caregivers face in obtaining required information or services. Methods. Interviews with 11 Alzheimer's disease patients' caregivers from the area of Eastern Croatia were conducted. Interpretative phenomenological analysis was chosen as the best method to interpret the caregivers' experience of information support received from the Croatian system. Analysis. Topics were defined for each interview and then superordinate topics were defined for the whole sample. Results. Results show that Alzheimer's disease patients' caregivers in Croatia are faced with numerous obstacles. No organised information support system was detected. Conclusions. A more holistic approach to information support is needed. Authors suggest an Alzheimer's disease information package to be distributed through the family doctors' practices.
Demographic changes have placed age-related mental health disorders at the forefront of public health challenges over the next three decades worldwide. Within the context of cognitive impairment and neurocognitive disorders among elderly people, the fragmentation of the self is associated with existential suffering, loss of meaning and dignity for the patient, as well as with a significant burden for the caregiver. Psychosocial interventions are part of a person-centered approach to cognitive impairment (including early stage dementia and dementia). Dignity therapy (DT) is a therapeutic intervention that has been shown to be effective in reducing existential distress, mood, and anxiety symptoms and improving dignity in persons with cancer and other terminal conditions in palliative care settings. The aims of this paper were: (i) To briefly summarize key issues and challenges related to care in gerontology considering specifically frail elderly/elderly with cognitive decline and their caregivers; and (ii) to provide a narrative review of the recent knowledge and evidence on DT in the elderly population with cognitive impairment. We searched the electronic data base (CINAHL, SCOPUS, PSycInfo, and PubMed studies) for studies regarding the application of DT in the elderly. Additionally, given the caregiver's role as a custodian of diachronic unity of the cared-for and the need to help caregivers to cope with their own existential distress and anticipatory grief, we also propose a DT-dyadic approach addressing the needs of the family as a whole.
Background Dementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs. Objective To identify important components of in-home care for persons with dementia and their informal caregivers in the Netherlands. Design Semi-structured interviews across the Netherlands, between March and June 2019 using thematic analysis. Setting and participants Persons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi-structured interviews findings. Results Five themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers. Conclusion This study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.
To describe the impact of the COVID-19 pandemic on help-seeking behaviors among individuals with eating disorders and caregivers. We analyzed service utilization data from the National Eating Disorder Information Centre (NEDIC). We compared the number of contacts and symptom frequency between the pandemic period and previous years. NEDIC was contacted 609 times during March 1–April 30, 2020 (72.1% individuals affected by disordered eating, 20.4% caregivers). The number of total contacts significantly increased from 2018 to 2019 and 2018 to 2020 (X2(3) = 50.34, p <.001). Among affected individuals (80.4% women), the number of contacts during the pandemic period was significantly higher (n = 439; X2(2) = 92.74, p <.001) compared to 2018 (n = 197) and 2019 (n = 312). There were higher rates of eating disorder symptoms, anxiety, and depression in 2020 compared to previous years. Thematic analysis of instant chats from the pandemic year revealed four emerging themes: 1) lack of access to treatment, 2) worsening of symptoms, 3) feeling out of control, and 4) need for support. These findings point toward the impact of COVID-19 in individuals affected by disordered eating and hold implications for service delivery during times of crises.
Despite the traumatic and fatal nature of motor neurone disease (MND) and the caring experiences being described as unrelenting, little is known about risk of psychiatric morbidity and Prolonged Grief Disorder (PGD) for family caregivers. Methods: A cross-sectional survey of caregivers bereaved in 2016-2018 was distributed by the five MND Associations in Australia (2019). Validated tools for PGD (PG-13), anxiety, depression, and family functioning were included. Multinomial logistic regression was used to compare the factors associated with grief. Findings: Overall, 393 valid responses were received, a 31% response rate. The prevalence of ICD-11 PGD was 9.7%; moderate/severe anxiety 12.3%, moderate/severe depression 18.5% and 18.7% indicated poor family functioning. MND caregivers have higher bereavement risk prevalence than the general bereaved population, with 9.6% in the high-risk group (vs 6.4%) and 54% at moderate risk (vs 35%). Being in the PGD group was 8 or 18 times more likely when the respondent had anxiety or depression, respectively. Poor family functioning significantly increased the likelihood of PGD by four times. Other significant predictors of PGD were a recent bereavement (<12 months), being a spouse/partner of the deceased, insufficient support during the disease journey, the deceased being under 60 years of age, and a shorter period of caring (<1.5 years). Conclusion: In a large national population-based sample of bereaved MND caregivers, 63% required bereavement support over and above that provided by family and social networks. This is a neglected yet seriously ill population that calls for better care provision and clinical practice.
Purpose - Advanced medical technology has reduced the mortality rate among traumatic brain injury (TBI) patients. This, however, has led to an increasing number of surviving patients with a major disability. As a consequence, these patients need attentive care which becomes an important issue for the society, particularly family members. Thus, this paper aims to review some of the salient roles, challenges and needs of the family caregivers in caring or nursing for their family members diagnosed with TBI. Design/methodology/approach - An inclusive search of the literature was undertaken to identify the family roles, challenges and needs in supporting and nursing TBI patients. Findings - Previous studies have shown that the family needs to address two important aspects of taking care of TBI patients, which involve emotional and physical affairs. Hence, it is essential for the family members to have adequate information on healing treatment, nursing and care methods, financial support, support groups, managing self-care and, more importantly, emotional and social support. Originality/value - This paper is not currently under consideration, in press or published elsewhere. In Malaysian culture, nursing disabled patients have always been a family responsibility. The role of nursing the patients has been done domestically and is considered a private affair. In order to execute the role, some put the patient needs as their priority and leave aside their needs and matters.
INTRODUCTION We aimed to examine the relative importance of medical and psychosocial needs of Asian breast cancer patients and their caregivers, and to identify the determinants of quality of life (QoL) at the time of diagnosis. METHODS This is a prospective observational study of the perceived needs and QoL of 99 dyads of breast cancer patients and their caregivers at diagnosis. A self-administered questionnaire was used to measure the perceived importance of medical and psychosocial support needs. Short Form-36 health survey (SF-36) version 2 was used to measure QoL. We also collected patient and caregiver demographic profiles and disease-specific information. Descriptive analysis of perceived needs was performed. SF-36 scores for eight domains and composite scores were calculated. Bivariate analysis and linear regression were performed to identify significant independent predictors of QoL of patients and caregivers. RESULTS The mean ages of the patients and caregivers were 56.5 years and 51.7 years, respectively. To have family around (73%), prompt information about treatment and treatment options, including side effects (71%), and prompt treatment for side effects (71%) were the top three needs among patients and their caregivers. Supportive nurses and prompt treatment for side effects positively improved patients' social functioning and bodily pain scores. Stage of disease, age, education and ethnicity also influenced QoL. Only the presence of chronic disease influenced caregivers' physical functioning and role-physical scores. CONCLUSION Patients and caregivers have similar perceptions of needs at diagnosis. A supportive healthcare team can positively influence patients' QoL, highlighting the importance of tailoring support according to needs.
Background: Relatives of intensive care unit (ICU) patients play an important role as caregivers and can experience emotional distress, also referred to as post-intensive care syndrome-family. A deeper understanding of what relatives go through and what they need may provide input on how to strengthen family-centred care and, in the end, contribute to the reduction of symptoms of post-intensive care syndrome-family. Method: This is a qualitative descriptive study with semistructured face-to-face interviews after ICU transfers. Findings: A total of 13 relatives of ICU patients participated. Relatives of ICU patients expressed five types of experiences after transfer from the ICU to the general ward: (1) relief, (2) uncertainty, (3) need to be acknowledged in becoming a caregiver, (4) sharing expectations, and (5) need for continuity in care. Relatives experience major uncertainties and prefer to be more actively involved in care and care decisions. Conclusion: Relatives of ICU patients experience gaps in care during the transition from the ICU to a general ward. Nurses can play a crucial role in the need for continuity of care by proactively involving relatives during the care pathway of ICU patients.
Purpose This study aims to compare the level of needs for home-care robots amongst older adults, family caregivers and home-care staff and clarify the factors constituting these needs. Design/methodology/approach A cross-sectional, anonymous questionnaire survey was administered. It included 52 items related to needs for home-care robots rated on a four-point Likert scale. Means and standard deviations were calculated, and the Kruskal-Wallis test was performed for each item. Factor analysis was conducted on the needs of home-care staff. Findings Responses from 79 older adults, 54 family caregivers and 427 home-care staff were analysed. For all three groups, the level of agreement was high for the following needs: to inform family and support personnel immediately when older adults fall, about their location in case of natural disasters and about mismanagement of fire by older adults with dementia. For family caregivers and home-care staff, the level of need concerning monitoring was higher than for older adults. Extracted using factor analysis, the six factors representing the essential needs for home-care robots were risk minimisation, daily monitoring of the physical condition, supporting activities of daily living (ADL) and instrumental ADL, pre-empting problems, communication and miscellaneous support. Originality/value The results showed that the education of caregivers and the co-design process of robot development should involve home-care staff, older adults and family caregivers, which are important for making decisions about the use of home-care robots for older adults.
Background: Informal caregivers of people with amyotrophic lateral sclerosis (ALS) experience a range of needs across the course of the disease. For the provision of adequate support, an examination of the empirical evidence is necessary.; Aim: The purpose of the systematic review was to synthesize evidence of needs of informal caregivers of people with ALS at different stages of caregiving.; Method: Systematic review of empirical research on needs of ALS informal caregivers in both English and German, from January 2000 to August 2018. We searched the databases EMBASE, MEDLINE (PubMed), PsycINFO, and CINAHL. Study selection, quality assessment, and data extraction was performed independently. Both quantitative and qualitative studies were included. Of the included studies, we additionally screened citing literature in Google Scholar (citation tracking). We linked the narrative synthesis to four stages of caregiving described by Williams and colleagues and used descriptive inductive thematic analysis to structure data within the stages.; Results: From 3275 abstracts screened, 48 manuscripts met our inclusion criteria. Our data analysis shows that needs differ across the four caregiving stages. While the stage of bereavement (stage 4) includes too little data for separate themes, themes for needs after diagnosis (stage 1), and terminal stage (stage 3) could be specified. As the maintenance (stage 2) stage comprised of themes relevant across the caregiving course, it became an overall stage.; Discussion: Healthcare professionals need to pay attention to current caregiving stages to provide support for informal caregivers. Further research is needed to tease out support needs for the bereavement phase.
This study aimed to compare perceptions of spiritual care among patients with life-threatening cancer, their primary family caregivers, and hospice/palliative care nurses. Data were collected using both structured and unstructured approaches. Structured questionnaire data were examined using statistical analysis methods, and unstructured data were examined using content analysis to compare the 3 participant groups. The questionnaire revealed that among all 3 groups, spiritual care was commonly perceived to relate to "having the opportunity for internal reflection," "finding meaning," "encouraging hope," and "listening to and being with patients." Content analysis of the unstructured data revealed 5 themes: "Caring with sincerity," "Strengthening spiritual resources," "Alleviating physical pain and discomfort" (among patients and primary family caregivers only), "Improving spiritual care service," and "Multifaceted cooperation" (among hospice/palliative care nurses only). Our findings suggest that for patients with life-threatening illnesses such as terminal cancer, spiritual care should not be limited to religious practice but should also satisfy inner existential needs, for example, by encouraging hope, providing empathy, and helping patients find meaning in their circumstances.
Intro: 'Every day, about 28% of Canadians provide care for a family member, friend or neighbour, and nearly half will do so at some point. Although many Canadians with chronic conditions and disabilities need care, the most common needs requiring caregiver help are age related. With 93% of older Canadians living at home, unpaid or informal caregivers provide up to 75% of care services, which equates to about $24–$31 billion in unpaid work annually. We must and can to do more to acknowledge and support informal caregivers in bearing this burden.'
Background: Close relatives of people with severe mental illness (SMI) experience problems known as family burdens. In addition, they may have their own needs for support, something often overlooked by the healthcare system. Meta-syntheses in this area may help explore the meaning of the experience of living with someone who has a SMI. Aim: Our aim was to describe the burdens experienced and needs perceived on a daily basis by relatives to someone who has a SMI. Methods: The databases PubMed, CINAHL, and PsychInfo were searched using a systematic search strategy. Studies were screened for relevance and quality was appraised. A meta-synthesis of nine qualitative studies was then conducted. Results: The nine studies discerned the following themes. Burden themes; Forced to carry a sometimes unbearable burden; Burdened by own ill-health and disrupted relationships; Distressed and stigmatized by society. Needs themes; strengthening protective factors; Skills and practical support greatly appreciated. Conclusions: The burdens and needs of relatives of persons with SMI strongly influence their lives. They require relief from both practical and emotional burdens. Family interventions and other programs to support relatives should be encouraged with this knowledge in mind.
Objectives: To characterize current practices, barriers, and facilitators to assessing and addressing family caregivers' needs and risks in primary care.; Design: Cross-sectional, national mail-based survey.; Setting: American Medical Association Masterfile database.; Participants: U.S. primary care physicians (N = 106), including general internists (n = 44) and geriatricians (n = 62).; Measurements: Approaches to assessing and addressing family caregivers' needs and risks; barriers and facilitators to conducting caregiver assessments.; Results: Few respondents reported conducting a formal caregiver assessment using a standardized instrument in the past year (10.5%). Informal, unstructured discussions about caregivers' needs and risks were common and encompassed a range of issues, most frequently caregivers' management of patients' safety (41.0%), ability to provide assistance (40.0%), and need for support (40.0%). To address caregiver needs, most respondents endorsed referring patients to services (e.g., adult day care, home care) (69.8%), assessing the appropriateness of the patient's living situation (67.9%), and referring caregivers to community agencies (63.2%). Lack of time was the most frequently cited barrier to assessing caregivers' needs (81.1%). The most commonly endorsed facilitators were access to better referral options (67.0%) and easier referral mechanisms (65.1%). Practice patterns, barriers, and facilitators to caregiver assessment did not differ by physician type.; Conclusions: Primary care physicians use informal, unstructured discussions rather than standardized instruments to assess caregivers' needs and risks. There is heterogeneity in the topics discussed and types of referrals made. Findings indicate the lack of translation of caregiver assessment tools from research to practice.
The main aim was to evaluate the measurement properties of the Family Needs Questionnaire-Revised (FNQ-R) in family members of individuals living with severe traumatic brain injury (TBI). A total of 309 family members of individuals with severe TBI from Colombia, Denmark, Mexico, Norway and Spain participated. Rasch analysis of the FNQ-R and its 6 subscales was conducted. The Rasch analysis indicated a lack of fit of the 37-item FNQ-R to one single underlying construct of needs, and less than half of the items were invariant across the countries. Misfit of single items was revealed in the Need for Health Information, Need for Emotional Support, Need for Instrumental Support, Need for Professional Support and Need for Community Support Network subscales. Fit to the Rasch model was obtained after removal of misfitting items. The Involvement in Care subscale had too few items to be adequately assessed by the Rasch approach. The FNQ-R is a well-targeted instrument for assessing the unmet needs of caregivers regarding the need for health information, emotional support, professional support and a community support network after some scoring adjustment and the removal of misfitting items. Caution should be taken when comparing responses across countries.
Caring for people with dementia is a major challenge for relatives and society worldwide. Understanding the family caregivers' needs is crucial to promote their care‐giving role during the disease trajectory. The aim of this mixed‐method systematic review was to identify and synthetise the existing literature on the needs of family caregivers of people with dementia at home. PubMed, CINAHL, Cochrane Database of Systematic Reviews and PsycINFO databases were systematically explored to find quantitative, qualitative and mixed‐method studies published between 2009 and 2019. A total of 1,196 citations were retrieved and 34 studies were included in the review. The variety of interrelated needs emerged from studies has been summarised in four themes: (a) Being supported, (b) Receiving accessible and personalised information, (c) Being trained and educated to care for their beloved with dementia and (d) Finding a balance. Care‐giving for individuals with dementia is an ever‐changing process characterised by continuous adjustments to their needs. The majority of a family caregivers' needs are oriented towards receiving support, help in offering daily care and finding a balance between the care‐giving role and their own personal needs. For family caregivers, receiving information is a priority to improve their knowledge and to develop coping abilities, care skills and strategies aimed at promoting a balance between care assistance duties and their own needs. They also need social, psychological and emotional support and access to flexible, tailored and timely formal care. Further studies are recommended to detect changes in family caregivers' needs throughout the disease progression in order to tailor formal care offered by social and healthcare services.
Oldest‐old individuals are a growing segment of the population that faces several challenges in terms of care demands. Informal caregivers experience more or less challenges, namely depending on the support they can access. The present study explores the unmet needs of a sample of informal caregivers of community‐dwelling older adults aged 80+ and analyses the association of such needs with sociodemographic information, care‐giving context (e.g., length of care),and health characteristics of the caregivers and care receivers (e.g., cognitive status and functionality). We recruited 175 care‐giving dyads from the North of Portugal. Descriptive statistics summarised the sample's characteristics. Informal caregivers were mainly women with a mean age of 60.6 years (SD = 9.8). Care receivers' mean age was 88.7 years (SD = 5.6) and were functionally dependent (9.3 points [SD = 7.0] and 27.0 points [SD = 3.5] for Basic and Instrumental Activities of Daily Living, respectively). A thematic analysis of an open‐ended question on unmet needs was performed, revealing the presence of unmet needs. The most relevant ones (financial support, caregiver support, primary care/medical specialities, and labour regulation) were further analysed, concerning the care‐giving dyad's using Independent Student's t test or Mann–Whitney U Tests, and Chi‐squared test or Fisher's Exact test depending on the variable. The most frequent unmet needs were associated with the caregiver's age, care receivers' kinship, number of care‐giving hours, the caregiver's gender, professional status, the caregiver strain and medicines intake. Findings suggest the need for establishing policies that ensure adequate sustainability of the provision of informal care that takes into account the needs of care‐giving dyads in the planning process.
Background: The impact and consequences of cancer on the patients and their family caregivers (FCs) are closely intertwined. Caregivers' burdens can be increased due to the patients' unmet needs and unresolved problems. Additionally, the caregivers' unmet needs may adversely affect their own well-being and the patients' health outcomes. This study aims to determine the palliative care needs and the factors associated with these needs in patients with advanced solid cancer and their FCs. Methods: In a cross-sectional survey, 599 patients with advanced solid tumours and 599 FCs were recruited from the largest ambulatory cancer centre and the inpatient ward of the largest hospital in Singapore. Determinants of patients' and FCs' needs were assessed by the Comprehensive Needs Assessment Tool (CNAT) and CNAT-C respectively. Clinical characteristics of patients were obtained from medical records. Results: The FCs (median age 51 years) were younger than the patients (median age 62 years), and were mostly female (62.6%) whereas the gender distribution of patients was quite balanced (49.2% male and 50.8% female). Both patients and FCs had "information" and "practical support" in their top three domains of palliative care needs. The second highest domain of needs was "psychological problems" (16.4 ± 21.5) in patients and "health-care staff" (23.4 ± 26.5) in FCs. The item that had the highest need score in "information" domain for both patients and FCs was "financial support for patients, either from government and/ or private organizations". Under clinical setting, the inpatients (19.2 ± 16.4) and their FCs (26.0 ± 19.0) tend to have higher needs than the outpatients (10.5 ± 12.1) and their FCs (14.7 ± 14.3). In terms of palliative care, higher total CNAT score was observed in both patients (16.6 ± 12.9 versus 13.3 ± 15.2) and their FCs (25.1 ± 18.6 versus 17.7 ± 16.7) who received palliative care. In terms of patients' KPS scores, patients with lower KPS scores tend to have higher needs. Conclusion: Overall, the findings confirm that patients with advanced cancer and their FCs have many palliative care needs irrespective of their clinical settings. Initiatives and interventions for the development of a comprehensive support system for both patients with advanced cancer and their FCs are warranted and can be derived from these findings.
Background There is a need to better understand the experiences and support needs of paid and family carers of people with an intellectual disability and dementia, and the role of Intellectual Disability Dementia Care Pathways (IDDCPs). This study explored the experiences of carers, and IDDCPs and other support structures within those experiences. Methods A constructivist grounded theory methodology was implemented. Data were obtained through 23 semi‐structured interviews with two family carers, eight paid carers and eight healthcare professionals. Findings The study's theory produced five interrelated categories: Impact of Dementia, Challenging the Diagnosis Process, Continuum of Support, Continuity and Continuum of Understanding. Conclusions Findings have demonstrated the importance of planning and supporting carers’ holistic needs; the role of an IDDCP in the post‐diagnostic support (or lack of it) for carers; and the importance of a timely diagnosis of dementia. Recommendations for practice are offered.
Background: It is becoming more common for siblings to fulfill a caregiving role for their brother or sister, particularly because people with intellectual/developmental disabilities (IDD) are often living longer and outliving their parents. However, most of what we know about siblings of people with IDD is based on research with children, and limited studies on the adult sibling experiences in Canada have been published. To meet the support needs of Canadian adult siblings, "The Sibling Collaborative", a grass‐roots initiative, conducted a needs assessment. Specific Aims The purpose of this study was to better understand the current challenges siblings experience and how requested resources may differ across three age groups: adults between the ages of 20 and 29 years, 30 to 49 years, and 50 years of age and older. Method A total of 260 siblings of individuals with IDD from across Ontario completed an online survey. Findings Siblings endorsed a relatively low rating of intensity of support that they provided for their brothers or sisters with IDD at the time of survey completion; however, the majority indicated that they intended to take a greater caregiving role in the future. Ratings of support differed by sibling age groups, as did challenges related to supporting brothers or sisters with IDD. Overall, participants reported a range of desired resources and preferred methods of accessing resources. Discussion Siblings' caregiving relationships with their brothers and sisters with IDD differed across age groups. Results from the current study indicate different supports may be needed for different age groups. As policies around the world continue to encourage continued family involvement in caregiving for adults with IDD, it is important to understand how systems can better support sibling caregivers.
Background: The prognosis of patients with brain tumors is widely varying. Psychooncologic need and depression are high among these patients and their family caregivers. However, the need for counselling and need for referral to psychooncology care is often underestimated.; Methods: We performed a single-institution cross-sectional study to evaluate psychooncologic need, depression and information need in both patients and their family caregivers. The Hornheider Screening Instrument (HSI) and the Patient Health Questionnaire (PHQ-9) were used to evaluate psychooncologic need and depression, and a study-specific questionnaire was developed to evaluate information need. Multivariable analyses were performed to detect correlations.; Results: A total of 444 patients and their family caregivers were approached to participate, with a survey completion rate of 35.4%. More than half of the patients and family caregivers were in need for referral to psychooncology care and 31.9% of patients suffered from clinically relevant depression. In multivariable analysis, psychooncologic need were positively associated with mild (odds ratio, OR, 7.077; 95% confidence interval, CI, 2.263-22.137; p = 0.001) or moderate to severe (OR 149.27, 95% CI 26.690-737.20; p < 0.001) depression. Patient information need was associated with depression (OR 3.007, 95% CI 1.175-7.695; p = 0.022).; Conclusions: Unmet counselling need in brain tumor patients and their family caregivers associate to high psychooncologic need and depression. Adequate information may decrease the need for referral to psychooncology care and treatment of depression in these patients. Future studies should further explore these relations to promote development of supportive structures.
Objectives: This study aimed to assess the relationship between sociodemographic, clinical, and psychological variables with quality of life (QoL) and the moderating role of caregivers' age and caregiving duration in caregivers of patients with Multiple Myeloma. Method: The sample included 118 caregivers who completed questionnaires that assessed psychological morbidity, satisfaction with social support, coping, burden, unmet needs, and QoL. Results: High psychological morbidity, burden and information, financial and emotional unmet needs were associated with lower QoL, while higher satisfaction with social support and more effective use of coping strategies were associated with better QoL. Women caregivers reported more satisfaction with social support and those who did not choose to care reported greater financial unmet needs and more use of coping strategies. The relationship between caregivers' psychological morbidity/social support and QoL was mediated by emotional needs and double mediated by coping and burden. The caregivers' age moderated the relationship between psychological morbidity/social support and emotional needs. Conclusion: Interventions to support the caregiver's emotional needs to promote their QoL are needed. These should be particularly tailored for older caregivers reporting greater psychological morbidity and younger caregivers less satisfied with their social support, as they have a negative indirect impact on their QoL.
Objective: To synthesise qualitative research that explored caregivers' experiences of caring for family diagnosed with schizophrenia. Methods: Electronic databases including PsycINFO, PubMed, CINAHL and Scopus were searched to identify relevant journal articles published from 2000 to March 2019. Quality was assessed and thematic synthesis of the qualitative research evidence undertaken. Papers were screened and independently appraised by two reviewers using The Critical Appraisal Skills Programme (CASP) for Qualitative Studies Checklist. The review was guided by Thomas and Harden's framework for thematic synthesis of qualitative research evidence. Results: The breadth of information across the 43 papers was noteworthy. Review of the findings noted that almost all of what was discussed fell into three broad themes: the 'feelings' of the caregiver towards their role, the patient and others, including the health system; the 'impacts' of the diagnosis and their caregiving role on the caregiver; and the 'needs' of the caregiver to improve the patient's quality of life and thereby the caregiver's quality of life. Within needs also came recommendations for future changes. Conclusion: Studies have shown that the caregiving process is a complex one, with both negative and positive emotional reactions, societal barriers, such as stigma and isolation, and unmet needs, such as timely, relevant and helpful information. Meeting the needs identified by caregivers has the capacity to address the impacts of the illness and caregiving and thereby reduce the negative feelings associated with the caregiver role.
PURPOSE: Family and friends often provide informal care for patients with cancer, coordinating care and supporting patients at home. Stress, depression, and burnout are increasingly recognized among these informal caregivers. Although past research has described a range of needs, including the need for information, details about unmet informational needs for caregivers have not been fully described. We sought to assess unmet information management needs for informal caregivers in the digital era. METHODS: This was a qualitative research study with semistructured interviews and focus groups of nonprofessional caregivers for patients with cancer, facilitated using a discussion guide. Eligible caregivers supported patients in the community who were in treatment (chemotherapy or radiotherapy) or completed treatment within 3 years. Participants were recruited using informational flyers at an academic cancer center and in the local community of metropolitan Milwaukee, Wisconsin. Sessions were transcribed verbatim and analyzed inductively to identify themes. RESULTS: Thirteen caregivers participated, the majority between 41 and 60 years of age: seven of 13, 53.8%, were predominantly women; 10 of 13 (76.9%) were educated, 10 of 13 (76.9%) had graduated from college; and of modest means, six of 13 (46.2%) had household incomes < $35,000. Four themes emerged: (1) the information overload paradox, where caregivers felt overloaded by information yet had unmet informational needs; (2) navigating volatility as a caregiver, with changing or unknown expectations; (3) caregivers as information brokers, which placed new burdens on caregivers to seek, share, and protect information; and (4) care for the caregiver, including unmet information needs related to self-care. CONCLUSION: This study identified several informational challenges affecting caregivers. Caregivers have dynamic and evolving informational needs, and strategies that support caregivers through just-in-time information availability or dedicated caregiver check-ins may provide relief within the stress of caregiving.
Objectives: While both patients and informal caregivers report high levels of cancer-related distress, supportive care needs of relatives are often not taken into account and little is known about mutual perception of distress within couples. Therefore, we aimed to investigate distress in female patients with breast cancer and their male partners as well as supportive care needs in partners.; Methods: In this cross-sectional study, we recruited women with breast cancer during primary cancer care and their male partners, obtained information on mental distress and supportive care needs through visual analog scales for four mood domains and the Short Form of Supportive Care Needs Survey (SCNS-SF34).; Results: Among 250 eligible patients with breast cancer, 102 patients (40.8%) and their male partners participated. Partners reported higher levels of distress ( p = 0.02), whereas patients (self-assessment) indicated stronger needs for help ( p < 0.001). Men with higher levels of distress were younger ( p < 0.001), and reported a shorter relationship duration ( p = 0.001) compared to partners with lower distress. Partners overestimated distress, anxiety, depression, and need for help in the patient. Patients overestimated partners need for help. The majority of partners (78%) reported at least one unmet need, most frequently related to the health system and information domain.; Conclusion: A systematic distress and needs assessment for women with breast cancer and their male partners is mandatory. The provision of optimal supportive care depends on protocols that include not only psychosocial care for patients but also procedures for managing distress and needs for partners including individual and couple-based interventions.
The article discusses research which described the process used to develop and evaluate the psychometric properties of Perceived Needs Questionnaire for Dementia Informal Caregivers (PNQ-IDC) designed to measure the needs of informal dementia caregivers. Topics covered include the identification of needs for which health-care professionals could provide support, the assessment of subjective caregiver burden, and the validity and reliability of the PNQ-IDC.
Purpose: The purpose of this scoping review was to explore the literature on experiences and perspectives of patients with hip fractures and their caregivers during transitions in care. Methods: Seven databases were searched for studies published between 1 January 2000 and 3 July 2018. Grey literature was also searched. Results: Eleven articles met the inclusion criteria. The scoping review found that patients and caregivers encounter several challenges during care transitions including the following: lack of information sharing, role confusion and disorganized discharge planning. Common suggestions reported in the literature for improving care transitions were: increasing written communication, offering a patient representative role, using technology for knowledge dissemination and increasing geriatrician involvement. Conclusions: The results of this scoping review provide a useful foundation from which to build strategies to address challenges such as lack of information sharing, role confusion and disorganized discharge planning experienced by patients and caregivers during care transitions. Further research needs to explore the development of strategies to promote patient-centered care especially during discharge from an acute care facility. Encourage health care providers to collaborate with patients with hip fracture and caregivers on decision-making about rehabilitation and recovery goals, discharge planning and safe patient transfer. Assess the needs of patients with hip fracture and caregivers before, during and after a care transition to deliver patient and family-centered care across multiple care settings. Provide patients with hip fracture and caregivers standardized information-exchange tools to increase timely, accurate exchange of information during care transitions. Encourage formal discussions about roles and responsibilities in the transitions in care process among patients with hip fracture, caregivers and health care providers.
Background: Identifying and addressing caregivers' unmet needs have been suggested as a way of reducing their distress and improving their quality of life. However, the needs of family cancer caregivers are complex in the period of long‐term survivorship in particular because they may diverge as the patients' survivorship trajectory does, and that is what this study investigated. Methods: Family cancer caregivers completed prospective, longitudinal surveys 2, 5, and 8 years after diagnosis (n = 633). Early caregiving characteristics and demographics were measured at 2 years. Caregiver status (former caregivers–remission, current caregivers, and bereaved caregivers) and unmet needs were measured at 3 assessments. Results: Caregivers' unmet needs at 8 years were attributable to the passages of the caregiving status as their patients' illness trajectory diverged from the initial state of receiving care. Specifically, either prolonged caregiving or having a break from caregiving followed by bereavement during long‐term survivorship was related to various domains of unmet needs at 8 years (t > 2.35, P <.02). Early perceived caregiving stress also predicted all domains of unmet needs at 8 years (t > 2.50, P <.02). Unmet needs at 8 years were the highest across the 3 assessment time points (F > 37.51, P <.001). Conclusions: The caregiving status trajectory over 8 years was a substantial predictor of family caregivers' unmet needs at the 8‐year mark. Findings provide guidance for the development of evidence‐based programs and patient/caregiver‐centered care policies to reduce the unmet needs of family caregivers, which reflect the diverse trajectories of cancer caregivership, many years after the diagnosis of their patients. Caregivers' unmet needs are attributable to the caregiving status over 8 years as their patients' illness trajectory diverges from receiving care. Findings provide guidance for the development of evidence‐based programs and patient/caregiver‐centered care policies to reduce the unmet needs of family caregivers, which reflect the diverse trajectories of cancer caregivership, many years after the diagnosis of their relatives.
Methods: Using semi-structured interviews, this descriptive qualitative research study examined informal caregivers' perspectives of participating in the personal care of a person living with a life-limiting illness within one hospice inpatient setting. Some 10 principal, informal caregivers of hospice inpatients were recruited by means of purposive sampling, using posters displayed in the hospice inpatient unit. Thus, participation was entirely 'opt-in'. A flash card was displayed at the beginning of each interview to determine a definition of personal care. Field notes and digital audio recording were used to capture data collected.; Results: Data were thematically analysed and demonstrated that informal caregivers' perceptions of personal care included everything that allowed the patient to remain the person they were. Informal caregivers reported an acceptable balance between being able to carry out personal care and hospice nursing staff involvement, despite no discussions being carried out to establish their wishes. Prior experiences of informal caregiving, and individual caregiver preparedness, contributed to negative and positive feelings about participating in personal care. Informal caregivers reported additional support and education needs associated with being able to participate in the personal care of patients on discharge and in the future.; Conclusions: The emergent themes provide palliative care practitioners with direction for professional practice and research around supporting informal caregivers participating in personal care. Healthcare professionals need to clarify terminology of personal care by having dialogues with informal caregivers and acting on these accordingly. However, not all informal caregivers want such conversations. Consequently, healthcare professionals should approach this topic sensitively. Healthcare professionals ought to be asking informal caregivers if they wish to participate in personal care. Hospice nurses need to engage, support and educate informal caregivers about personal care. Furthermore, they should help to maintain and develop the skills of those informal caregivers who want to continue to play this role and not allow them to become deskilled.
The article focuses on Parkinson's disease (PD) is quite challenging to deal with, for patients and their caregivers alike. Topics include the caregivers help PD patients deal with their symptoms even before a formal diagnosis is made, the family member while going through the tedious process of diagnosis and treatment to palliative care, and the PD commonly affects patients in the age when they are transitioning to retirement.
Background: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making. Objectives: To understand the decisional needs of patients and families making decisions about hospice care. Methods: We conducted focus groups with family caregivers and hospice providers and one-on-one interviews with patients considering or enrolled in hospice care. We identified participants through purposeful and snowball sampling methods. All interviews were transcribed verbatim and analyzed using a grounded theory approach. Results: Four patients, 32 family caregivers, and 27 hospice providers participated in the study. Four main themes around decisional needs emerged from the interviews and focus groups: (1) What is hospice care?; (2) Why might hospice care be helpful?; (3) Where is hospice care provided?; and (4) How is hospice care paid for? Discussion: Hospice may not be the right treatment choice for all with terminal illness. Our study highlights where patients' and families' understanding could be enhanced to assure that they have the opportunity to benefit from hospice, if they so desire.
Objectives Parkinson’s disease presents an evolving challenge for patients and families due to an unpredictable disease trajectory and symptoms that complicate social interactions. In this study, we explore neurologists’ perspectives on the challenges Parkinson’s disease presents for families and the strategies they use to improve communication and quality of life. Methods We conducted hour-long semi-structured interviews with 16 neurologists at 4 care delivery institutions in the San Francisco Bay Area, focusing on techniques neurologists use to support families through the Parkinson’s disease journey. Results Neurologists identified strategies for addressing caregiver–patient disagreements around symptom accuracy and negotiating driving safety. Family education is needed to contextualize patient symptoms and to identify psychosocial support resources. Unmet caregiver needs remain, particularly in the form of psychosocial support, respite care and support for unequal gender dynamics in the Parkinson’s disease caregiving experience. Discussion Family members of Parkinson’s disease patients face unique caregiving and interpersonal challenges due to the nature of the disease. Targeted education and structural support are needed to alleviate current burdens and allow for improved patient- and family-centered care.
Continued smoking at the time of a cancer diagnosis can severely impact the efficacy of cancer patient treatment and survival. The time of diagnosis can serve as a "teachable moment" for smoking cessation education, since patients may be receptive to discussions about quitting. Caregivers may have a pivotal role in supporting patients with their cessation efforts. The purpose of this study was to identify the smoking cessation informational needs of cancer patients and their caregivers. A needs assessment survey was administered to both patients and caregivers that assessed information needs across five domains: (1) General Information and Support; (2) Smoking, Health and Disease; (3) Relationships; (4) Testimonials; (5) Interventions. Mean importance scores were determined based on the proportion of respondents who ranked how important individual items were within the broader domains. Forty patients and twenty-two caregivers completed the survey. Among patients, the mean age was 61 years, with 35% diagnosed with a head and neck malignancy and 62% reporting as current smokers. Among caregivers, the mean age was 58 years, with 81% reporting to be the patient's immediate family member and 50% as current smokers. The General Information and Support domain was rated as the most important domain for both cancer patients and caregivers. The top preferred modality for receiving smoking cessation education across all domains was pamphlets for both groups. This study identifies the key informational elements that should be considered in the development of smoking cessation resources to meet the informational needs of cancer patients and caregivers.
Background: The high burden of care associated with older stroke patients is a factor that threatens the health of family caregivers. Identifying the needs of family caregivers in this group of patients can help provide effective solutions. The present study aimed to determine the needs of family caregivers of older stroke patients. Methods: The sample size of this longitudinal study included 200 family caregivers of older stroke patients from two hospitals in Iran. Data collection included demographics, responses to family caregivers' needs questionnaires, and the Barthel Index which was taken in four stages including admission time, pre-discharge, two weeks and 12 weeks post-discharge. Results: The results showed that all participants at all stages of the study identified "respect for the patient when providing education, treatment, or rehabilitation" as one of their needs. There was a statistically significant relationship between the older adult survivor's age and the number of family caregivers' needs two weeks post-discharge (p = 0.012) and 12 weeks post-discharge (p = 0.008). There was a significant relationship between the patient's hospitalization period and the number of caregivers' needs three months after the patient's discharge (p = 0.028), and a significant statistical relationship between the pre-discharge physiotherapy of the patients and the number of their caregivers' needs during the two weeks post-discharge (p = 0.018). There was also a statistically significant relationship between the patient's level of dependence and the number of caregivers' needs (p = 0.0001). On the contrary, there was no significant relationship between the sex, place of living, and underlying disease history of the patient and the number of caregivers' needs (p > 0.05). Conclusion: The results of the present research indicate that the total number of caregivers' needs decreases with increasing duration of the disease. However, respite and care provision planning by other family members, seeking assistance from professional caregivers, and the search for community support resources can help reduce the burden of care of caregivers and give them the opportunity to meet their needs in different dimensions of patient care provided.
Supplemental digital content is available in the text. OBJECTIVE: The aim of this study was to explore the information needs and preferred sources of information of Korean family caregivers of patients with amyotrophic lateral sclerosis (ALS). METHODS: Family caregivers of patients with ALS (n = 108) completed a structured questionnaire to assess their information needs and preferred sources of information. RESULTS: Most of the caregivers obtained health information from Internet searches (89.8%) and healthcare professionals (85.2%). The source rated most helpful was healthcare professionals, and that rated least helpful was broadcast media. Family caregivers who were younger than 50 years and well educated and caregivers of bulbar-onset ALS patients had higher scores of information needs. CONCLUSION: Providing information through healthcare professionals and self-support groups could enhance family caregiver satisfaction. Family caregivers who are older and less educated need to be more empowered to be involved in information-based caring, and caregivers of patients with bulbar-onset ALS have substantial information needs.
Background: Many clinical trials have assessed treatments for depressive disorders and bipolar depression. However, whether, and which, assessed outcome domains really matter to patients, informal caregivers, and health-care professionals remains unclear.; Methods: We did an international online survey in French, German, and English. Participants were adult patients with a history of depression, informal caregivers, and health-care professionals, recruited by purposeful sampling. To identify outcome domains, participants answered four open-ended questions about their expectations for depression treatment. We disseminated the survey without restriction via social media, patient and professional associations, and a media campaign. Four researchers independently did qualitative content analyses. We assessed data saturation using mathematical models to ensure the comprehensive identification of outcome domains.; Findings: Between April 5, 2018, and Dec 10, 2018, 1912 patients, 464 informal caregivers, and 627 health-care professionals from 52 countries provided 8183 open-ended answers. We identified 80 outcome domains related to symptoms (64 domains), such as mental pain (or psychological or psychic pain, 523 [17%] of 3003 participants) and motivation (384 [13%]), and functioning (16 domains), such as social isolation (541 [18%]). We identified 57 other outcome domains regarding safety of treatment, health care organisation, and social representation, such as stigmatisation (408 [14%]).; Interpretation: This study provides a list of outcome domains important to patients, informal caregivers, and health-care professionals. Unfortunately, many of these domains are rarely measured in clinical trials. Results from this study should set the foundation for a core outcome set for depression.; Funding: Fondation pour la Recherche Medicale and NIHR Oxford Health Biomedical Research Centre.
Objectives: • Describe 1-2 examples of experiences living and receiving care at home from the perspective of people with dementia and/or family caregivers • Describe 1-2 examples of unmet palliative care needs from the perspective of people with dementia and/or family caregivers receiving or providing care at home. Importance: People with dementia (PWD) and their families represent a growing population who is increasingly accessing palliative care in the United States. Home-based palliative care interventions should incorporate the perspective of PWD and caregivers regarding experiences and unmet needs. Objective(s): To characterize care needs and experience with palliative services at home among PWD and family caregivers. Method(s) We recruited participants who received care at a tertiary behavioral neurology clinic for semi-structured interviews. Sampling targeted PWD in mild-to-moderate stages and family caregivers, both active and bereaved. Interviews explored palliative care needs and services for dementia care at home, based on domains of the 2018 National Consensus Project. Data were analyzed by an interdisciplinary team using the constant comparative method. Results: Of 45 participants, 9 had dementia, 16 were active caregivers, 20 were bereaved caregivers; 57% had experience with Alzheimer’s disease, the remainder had less common syndromes like frontotemporal dementia. Every participant described multiple challenges and unmet palliative care needs while receiving or providing care at home. Challenges included changing relationship dynamics, uncertainty about the future, lack of knowledge of resources available, caregiver stress and burnout, isolation, cost and quality of paid caregivers. Unmet needs included anticipatory guidance, advance care planning, psychosocial support, symptom management, social connection, and the provision and coordination of services. PWD articulated fewer challenges and needs than caregivers. Many participants engaged hospice at some point. Positive experiences included receipt of guidance, emotional support, direct services; negative included one more care transition, insufficient time to build trust, or being discharged alive. Experience with specialty palliative care was rare and positive except when experienced as a step-down from hospice. When we presented a definition of palliative care, adapted from CAPC, nearly all said it sounded appealing and useful. Conclusion(s) Stakeholders indicated multiple opportunities for palliative care approaches to address dementia challenges. Impact: We will use this data to inform development of basic and specialty palliative care interventions for dementia.
Palliative care initiatives strive to control symptoms and improve the quality of care for individuals with heart failure (HF) and their informal caregivers. Yet, caregiving is stressful for many caregivers and requires a delicate balancing act between providing quality care and maintaining other responsibilities. Support services are a crucial component of palliative care. Yet, little is known regarding what support services HF caregivers need to assist with caregiving duties. Thus, the purpose of this study was to identify support services informal caregivers perceive would be useful in caring for individuals with heart failure in the home. This secondary analysis was part of a cross-sectional, descriptive, exploratory study which included 530 heart failure caregivers, using an online self-report instrument. Content and quantitative data analyses were conducted. Caregivers were primarily Caucasian (n = 415; 78.3%) male (n = 270; 50.9% male), with an average age of 41.4 (±10.4) years. Individuals with heart failure were mostly male (n = 297; 56.0%), age 54.3 (± 14.8) years of age and had New York Heart Association Class I-II heart failure (n = 375; 70.7%). Needed support services identified by caregivers related to cost effective heart failure support, caregiver information/education/training, and caregiver support. These services had two or more components. Caregivers of individuals with heart failure experience complex problems in the home that require important services to enhance palliative care. Exploring ways to provide these important support services will assist in the development of interventions to reduce negative outcomes and enhance heart failure palliative care.
Background: In less resourced settings, formal rehabilitation services for stroke survivors were often absent. Stroke survivors were referred to community health workers (CHWs) who were untrained in rehabilitation.; Aim: To describe the experience and perceived needs of stroke survivors, their caregivers and CHWs in a context with limited access to and support from formal rehabilitation services.; Setting: The Breede Valley subdistrict, Western Cape, South Africa, a rural, less resourced setting.; Methods: A descriptive exploratory qualitative study. Four focus group interviews were held with purposively selected stroke survivors and caregivers and four with CHWs. A thematic approach and the framework method were used to analyse the transcripts.; Findings: A total of 41 CHWs, 21 caregivers and 26 stroke survivors participated. Four main themes and 11 sub-themes were identified. Because of the lack of knowledge, training and rehabilitation services, the main theme for all groups was having to 'figure things out' independently, with incontinence management being particularly challenging. Secondly was the need for emotional support for stroke survivors and caregivers. Thirdly, contextual factors such as architectural barriers and lack of assistive products negatively impacted care and function. Lastly, the organisation of health and rehabilitation services negatively impacted home-based services and professional support.; Conclusions: With appropriate training, the CHWs can be pivotal in the training and support of family caregivers and stroke survivors. Care pathways and the role and scope of both CHWs and therapists in home-based stroke rehabilitation should be defined and restructured, including the links with formal services.
Purpose France, once a pioneer in psychiatry, is now sinking as its population faces major mental health challenges. This includes the 12 Million French individuals with psychiatric conditions, the lack of appropriate structures and the shortage of skilled mental health professionals, but it also leaves families in critical situations. The purpose of this study is to explore the carers’ caregiving experiences and to suggest ways to organise educational programmes to support mental health carers in France. Design/methodology/approach The research was conducted from January 2018 to November 2019. It included French carers of patients with mental conditions. Recorded semi-structured interviews were used and findings were analysed through an inductive thematic analysis and regrouped into key themes. Findings Participants had overwhelming negative representations of “mental illness”. The fact that they were excluded from participating in the patient’s health management further added to their misconceptions around mental disability, it limited their communication with their family and amplified their burdens. Research limitations/implications There is an urgent need for carer empowerment; carers should be included in educational programmes, they should benefit from French Government subsidies and social-network assistance and receive quality assistance by trained mental health professionals. The critical situation of carers can only be addressed by combining these three steps and through the action of appropriate actors in the field of mental health, thus alleviating the current paradigm of psychiatric care in France. Originality/value Thousands of research papers regarding carers have been published in other countries. In addition yet, to the knowledge, only a few investigations on French mental health carers have been conducted to this day. The singularity of this research lies in the rare individual interviews, which provided us with first-hand testimonies of mental health carers in France. This data could be of vital aid for professionals and for policymakers when advocating for better support of carers in mental health.
Objectives: • Identify the domains of care as outlined by the National Consensus Panel Clinical Practice Guidelines for Quality Palliative Care caregivers ask the majority of questions in a home hospice visit. • Recognize and discuss how to use questions from the informal caregiver in the home hospice environment to reveal caregiver misunderstandings and level of comprehension about the patient's plan of care. •Determine which domains of care caregivers state uncertainty and confusion yet caregivers do not ask questions in these areas. Importance: With a growing number of people choosing home hospice care after a terminal cancer diagnosis, communication between the hospice nurse and the informal caregiver is at the forefront of hospice care. Expert communication is vital to convey not only how to carry out the plan of care but also how assess family caregiver's understanding that plan. Objective(s): The aim of this project was to explore the scope of questions from caregivers of cancer patients in home hospice by categorizing caregiver questions using the National Consensus Panel Clinical Practice Guidelines for Quality Palliative Care (NCP) as a template with the addition of the domain Relationship Building to be inclusive of all therapeutic communication. Method(s): This was a secondary analysis of audio recordings of home hospice nurse visits (N= 32 visits). Coding was conducted in two waves using NVivo 11 software; first a deductive content analytic process was applied to caregiver questions to identify the NCP care domain; next questions were inductively coded into emerging subcategories. Results: Questions (N = 224) from caregivers were found in four domains; Physical Aspect of Care (149), Care of the Imminently Dying (37), Relationship Building (36), and Cultural (1). In the domain, Physical Aspect of Care, Medication Management (43%) was the most common subcategory. In Relationship Building, 92% of questions focused on Personal Information about the nurse. In the domain, Care of the Imminently Dying, questions about Symptoms to Recognize (that death was imminent) (57%) were the most common. Conclusions: Results suggest caregivers struggle with basic information acquisition and retention concerning the care of patient and what to expect as the patient deteriorates. Impact: Caregivers have unmet educational needs in areas of medication management and need further explanation of what future care of the patient entails as the patient deteriorates. Future research is needed to explore how to elicit questions from domains caregivers have stated uncertainty in, yet tend to avoid, such as cultural and spiritual aspects of care.
Background and Aim: Being diagnosed with multiple sclerosis is usually accompanied by emotional trauma for patients and their families. The chronic, progressive, and unpredictable nature of the disease spells the patients' long-term need for care from their families. As soon as a diagnosis is made, family caregivers are faced with many challenges. The present study aims to identify family caregivers' experiences at the first hospitalization of their patients. Materials and Methods: The present study is a work of qualitative research and uses the conventional content analysis approach. It lasted from July 2019 to March 2020. The subjects were selected via purposeful sampling. To collect data, the researchers conducted in-depth, semi-structured interviews with 18 family caregivers of patients with multiple sclerosis. The collected data were analyzed using MAXQDA 2007. Results: Analysis of the data yielded three themes: peaceful environment, need for continuing full support, and religion-based coping strategies. Conclusion: The findings of the present study can be used to develop support programs that address family caregivers' problems and needs to assist them in accepting and coping with the conditions of their patients, thereby increasing the quality of care provided to patients with multiple sclerosis.
Background: Stroke in a family affects both patients and their spousal caregivers. Despite advances in the medical management of stroke, less is known about the social and cultural factors that impact couples regarding stroke recovery. Purpose: The purpose of this study was to explore the experiences of stroke from the perspectives of couples affected by stroke and the nurses managing patient rehabilitation. Methods: An interpretive descriptive study was conducted. Purposive sampling was used to enroll 17 participants, comprising eight nurses, five spousal caregivers, and four stroke survivors. Individual, in-depth interviews were performed at a rehabilitation hospital in Singapore in June 2018. Results: The primary theme was the diverse meanings of stroke recovery attributed to limited conversations about the care decisions made by couples and rehabilitation nurses. The second theme was the challenges in nursing responsibilities that hindered the recovery of patients with stroke. Conclusions/Implications for Practice: The meaning of recovery differs between patients and their informal and formal care providers. This issue should be explored in patient–provider conversations, as these conversations highlight the values and preferences that affect the stroke recovery trajectory. Enhancing shared decision making by patients, spousal caregivers, and healthcare providers during the stroke trajectory may promote the alignment of values that are critical to the stroke recovery experience. Further research into whether and how to incorporate shared decision making in rehabilitation hospital settings as an interventional component is warranted to better support stroke survivors before discharge.
Background: Family caregivers are of vital support to patients receiving home-based palliative care. Aims and Objectives: This study sought to identify and comprehend the challenges that caregivers face while taking care of a terminally ill patient in a home-based palliative care setting and the mechanisms that facilitated their coping. Materials and Methods: A qualitative approach was employed to understand the perceptions of primary caregivers through 3 focus group discussions and 4 in-depth interviews, across 3 socioeconomic categories and 3 geographic zones of Mumbai. Results: Caregivers expressed that they wished they had been introduced to palliative care earlier. Being trained on minor clinical procedures and managing symptoms, and receiving emotional support through counselling were found beneficial. Caregivers did not perceive the need for self-care as the period of active caregiving was often short. Bereavement counselling was felt to be of much help. Conclusion: The study helped understand the caregivers' perceptions about the factors that would help them in patient as well as self-care. Recommendations for designing interventions for future caregivers and recipients were also made.
Aim The aim of this review was to identify and synthesise literature reporting on support needs of older male caregivers, who are providing care for a chronically ill spouse/partner at home. Background Traditionally, informal caregiving has been perceived as a feminised activity. Consequently, caregiving research has been dominated by female samples, and male caregivers are grossly under‐represented. Given the growing recognition of caregiving as a gendered concept, and the rise in number of male caregivers, particularly in later life, the need for better understanding of the needs of male caregivers is important in order to plan effective support for this population. Design A systematic literature review. Methods Four electronic databases and grey literature were systematically searched. Results The systematic search resulted in 3,646 papers, eligibility criteria were applied to the full texts of 104 papers, and 11 papers met the inclusion criteria. Two core themes were identified: the need to maintain masculinity and the provision of social support. Conclusion Findings suggest that men may have a gendered approach to caregiving based on dominant masculine norms. This can be manifested in a reluctance to ask for or accept help and a desire to retain control over caregiving. Findings also revealed isolation and loneliness experienced by older male caregivers, along with a preference for support to address this within a male‐specific context. It is suggested that healthcare professionals should be cognisant of the male caregiver approach and should have an increased awareness of male caregivers support preferences, and of their own gendered assumptions, in order to provide effective support for this population. Implications for practice Nurses have a key role in providing family support. Findings from this review suggest that nurses should be aware of the specific needs of older male spousal caregivers if they are to provide effective care and support to this population group.
The study objective was to explore the characteristics of rural general practice which exemplify optimal end‐of‐life (EOL) care from the perspective of people diagnosed with cancer, their informal carers and general practitioners (GPs); and the extent to which consumers perceived that actual EOL care addressed these characteristics. Semi‐structured telephone interviews were conducted with six people diagnosed with cancer, three informal carers and four GPs in rural and regional Australia. Using a social constructionist approach, thematic analysis was undertaken. Seven characteristics were perceived to be essential for optimal EOL care: (1) commitment and availability, (2) building of therapeutic relationships, (3) effective communication, (4) psychosocial support, (5) proficient symptom management, (6) care coordination and (7) recognition of the needs of carers. Most GPs consistently addressed these characteristics. Comprehensive EOL care that meets the needs of people dying with cancer is not beyond the resources of rural and regional GPs and communities.
Objectives: to understand how the empowerment of family caregivers of people with stroke occurs in the hospital environment.; Methods: a qualitative research, participatory action research, articulated with Paulo Freire's Research Itinerary, developed in April 2018 with family caregivers, in a Stroke Unit.; Results: three predominant codes were coded: the need for empowerment and autonomy to experience the care situation; the challenges experienced in becoming a caregiver; and family support. Participants presented a lack of information inherent to the care process, with distancing from empowerment to perform the function in dehospitalization. Dialogue revealed empowerment as a possibility for critical awareness and skill development.; Conclusions: it highlights the importance of directing health promotion for caregivers, inserting them in the care process, recognizing their needs and intensifying practices that promote empowerment for care, bypassing curative actions.
Purpose: The biopsychosocial ramifications of dysphagia are widespread. However, its influence on informal caregivers and families is often overlooked. Ultimately, the health and well-being of an entire family is central to care provision. This tutorial introduces readers to the current literature on dysphagia-related caregiver burden and third-party disability, illustrates the consequences of such burden on both caregivers and patients, and suggests strategies for better supporting patients' informal caregivers. Conclusions: It is essential that speech-language pathologists recognize that the consequences of dysphagia are not limited to the impairment itself and acknowledge dysphagia's substantial impact on the entire family system. More general health care literature suggests that asking caregivers individual questions, modifying the language used to talk with them, providing them with targeted education and resources, and organizing support groups may all be beneficial for increased perceived support and self-efficacy. Ultimately, in order to best meet the needs of our patients with dysphagia, we must also better meet the needs of their families and other informal caregivers.
Background Patients with end-stage kidney disease, receiving haemodialysis rely increasingly on informal carers to help manage their debilitating chronic disease. Informal carers may experience a negative impact on their quality of life exacting a toll on their physical, social and emotional well-being. Informal carers of patients with end-stage kidney disease receiving haemodialysis have significant unmet needs which may include physical and psychological issues, financial disadvantage and social isolation. Poor experiences of informal carers may also impact the experience of the patients for whom they care. The needs of this group of informal caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. The aim of this study is therefore to explore the experiences and unmet needs of informal carers of people with end-stage kidney disease receiving haemodialysis and develop a psychosocial intervention to support them in their caring role. Methods This qualitative study will include a systematic review, semi-structured interviews with 30 informal carers and focus groups with renal health care professionals. Perceptions of care provision, caregiving experiences as well as contextual factors impacting the design and delivery of a psychosocial intervention for informal carers of patients with end-stage kidney disease, will be explored and will inform the development of a supportive intervention. Discussion The needs of informal carers of patients with end-stage kidney disease have been neglected with little emphasis placed on supportive interventions that might assist and support this group in their care giving role. This is in contrast to other chronic disease groups such as stroke, cancer and dementia. In these conditions well developed supportive interventions have significantly improved outcomes in regard to informal caregivers' preparedness, competence, positive emotions and psychological well-being in terms of informal care provision. Support interventions could potentially improve the quality of life of those informal carers who provide care to patients with end-stage kidney disease receiving haemodialysis.
Context: Although bereaved family surveys (BFS) are routinely used quantitatively for quality assessment, open-ended and narrative responses are rarely systematically analyzed. Analysis of narrative responses may identify opportunities for improving end-of-life (EOL) care delivery. Objectives: To highlight the value of routine and systematic analysis of narrative responses and to thematically summarize narrative responses to the BFS of Veterans Affairs. Methods: We analyzed more than 4600 open-ended responses to the BFS for all 2017 inpatient decedents across Veterans Affairs facilities. We used a descriptive qualitative approach to identify major themes. Results: Thematic findings clustered into three domains: patient needs, family needs, and facility and organizational characteristics. Patient needs include maintenance of veteran's hygiene, appropriately prescribing medications, adhering to patient wishes, physical presence in patient's final hours, and spiritual and religious care at EOL. Family and caregiver needs included enhanced communication with the patient's care team, assistance with administrative and logistical challenges after death, emotional support, and displays of respect and gratitude for the patient's life. Facility and organizational characteristics included care team coordination, optimal staffing, the importance of nonclinical staff to care, and optimizing facilities to be welcoming, equipped for individuals with disabilities, and able to provide high-quality food. Conclusion: Systematic analysis of narrative survey data yields unique findings not routinely available through quantitative data collection and analysis. Organizations may benefit from the collection and regular analysis of narrative survey responses, which facilitate identification of needed improvements in palliative and EOL care that may improve the overall experiences for patients and families.
Objectives We provide national estimates of caregiving networks for older adults with and without dementia and examine how these networks develop over time. Most prior research has focused on primary caregivers and rarely on change over time. Method We identify a cohort of older adults continuously followed in the National Health and Aging Trends Study between 2011 and 2015 and receiving help from family members or unpaid caregivers in 2015 (n = 1,288). We examine differences by dementia status in network size, types of assistance and task sharing, and composition—differentiating between "specialist" and "generalist" caregivers helping in one versus multiple activity domains. Multinomial regression is used to estimate change over time in network task sharing and composition. Results In 2015, older adults with dementia had larger caregiving networks involving more task sharing than those without dementia and more often relied on generalist caregivers, especially the subset assisting with medical, household, and mobility or self-care activities. Uniformly greater reliance over time on these more intensely engaged generalist caregivers chiefly accounts for larger dementia networks. Discussion Findings lend support to the need for caregiver training on managing multiple task domains and—for dementia caregivers in particular—task-sharing skills. More generally, the design of new approaches to better support older adults and their caregivers should consider the complexity, heterogeneity, and change over time in caregiving networks.
Purpose: To evaluate the importance of different challenges experienced by informal caregivers to persons with systemic sclerosis (SSc) and identify priorities for support services that could be developed. Materials and Methods: Caregivers of people with SSc from three continents completed an online questionnaire to rate the importance of possible caregiver challenges and likelihood of using different forms of support services. Importance of challenges and likelihood of using support services were rated from 1 (not important; not likely to use) to 4 (very important; very likely to use). Results: Two hundred and two informal caregivers completed the survey (79 women, 123 men). Mean age was 58 years (standard deviation = 13). The most important challenges were related to supporting the care recipient with emotional difficulties and physical discomfort. Caregivers indicated that they would be more likely to use support services that involved online or hard-copy information resources, including those provided soon after diagnosis, compared to support that involved interacting with others. Conclusions: Supporting the care recipient in managing emotional difficulties and physical discomfort were important challenges among caregivers. Interventions delivered through hardcopy or online resources, including those delivered soon after the care recipient's diagnosis, were rated as being most likely to be used by caregivers. Many caregivers for individuals with systemic sclerosis report struggling to support their care recipient with emotional difficulties and physical discomfort. Rehabilitation professionals can aid in the development of support services that caregivers have identified as being likely to use and can refer caregivers to resources that they have identified as being helpful, such as educational information about the disease. The development of support services should focus on aspects of caring that caregivers found most challenging and be delivered in a format that considers caregiver preferences.
Background: Particularly in the context of severe diseases like cancer, many patients wish to include caregivers in the planning of treatment and care. Many caregivers like to be involved but feel insufficiently enabled. This study aimed at providing insight into patients' and caregivers' perspectives on caregivers' roles in managing the patient portal of an electronic personal health record (PHR). Methods: A descriptive qualitative study was conducted comprising two study phases: (1) Usability tests and interviews with patients with cancer and caregivers (2) additional patient interviews after a 3-month-pilot-testing of the PHR. For both study parts, a convenience sample was selected, focusing on current state of health and therapy process and basic willingness to participate and ending up with a mixed sample as well as saturation of data. All interviews were audio-recorded, pseudonymized, transcribed verbatim and qualitatively analyzed. Results: Two main categories emerged from qualitative data: 'Caregivers' role' and 'Graduation of access rights' - consisting of four subcategories each. The interviewed patients (n = 22) and caregivers (n = 9) felt that the involvement of caregivers is central to foster the acceptance of a PHR for cancer patients. However, their role varied from providing technical support to representing patients, e.g. if the patient's state of health made this necessary. Heterogeneous opinions emerged regarding the question whether caregivers should receive full or graduated access on a patient's PHR. Conclusions: In order to support the patient and to participate in the care process, caregivers need up-to-date information on the patient's health and treatment. Nevertheless, some patients do not want to share all medical data with caregivers, which might strain the patient-caregiver relationship. This needs to be considered in development and implementation of personal health records. Generally, in the debate on patient portals of a personal health record, paying attention to the role of caregivers is essential. By appreciating the important relationship between patients and caregivers right from the beginning, implementation, of a PHR would be enhanced. Trial Registration: ISRCTN85224823 . Date of registration: 23/12/2015 (retrospectively registered).
OBJECTIVES To understand current practices, challenges, and opportunities for a systematic assessment of family caregiversʼ needs and risks in primary care. DESIGN Qualitative study consisting of in‐depth semi‐structured interviews. SETTING Four primary care practices located in urban and rural settings. PARTICIPANTS Primary care clinicians, staff, and administrators (N = 30), as well as older adult patients and family caregivers (N = 40), recruited using purposive and maximum variation sampling. MEASUREMENTS Current experiences, challenges, and opportunities for integrating standardized caregiver assessment into primary care delivery. Interviews were audio‐recorded and transcribed; transcripts were analyzed using the constant comparative method of data analysis. RESULTS: Participating clinicians had been in practice for an average of 12.8 years (range = 1‐36 y). Patients had a mean age of 84.0 years (standard deviation [SD] = 9.7); caregivers had a mean age of 67.0 years (SD = 9.3). There was wide variability in current practices for identifying caregiversʼ needs and risks, encompassing direct and indirect approaches, when such issues are considered. Participants posited that integrating standardized caregiver assessment into primary care delivery could help improve patient care, enhance clinician‐caregiver communication, and validate caregiversʼ efforts. Barriers to assessment included insufficient time and reimbursement, liability concerns, lack of awareness of community resources, and concerns about patient autonomy. To facilitate future uptake of caregiver assessment, participants recommended brief self‐administered assessment tools and post‐screen discussions with practice staff. CONCLUSION: Identification of caregiversʼ needs and risks in primary care is highly variable. Integration of standardized caregiver assessment into practice requires coordinated changes to policy, revision of practice workflows, and an interdisciplinary approach to the development of appropriate assessment tools
Caregivers of patients often provide key support for patients after hospitalization. This qualitative metasynthesis describes caregiver perspectives about care coordination for patients discharged from the hospital. A literature search of Ovid Medline and CINAHL completed on May 23, 2018, identified 1,546 studies. Twelve articles were included in the final metasynthesis. Caregiver perspectives about care coordination were compiled into overall themes. A subanalysis of studies in which patients were discharged with home health services was completed. Five main themes emerged related to caregiver perspectives on care coordination after hospitalization: (a) Suboptimal access to clinicians after discharge, (b) Feeling disregarded by clinicians, (c) Need for information and training at discharge, (d) Overwhelming responsibilities to manage appointments and medications, and (e) Need for emotional support. Findings from this metasynthesis suggest the need for clinicians to engage with caregivers to provide support, training, and communication after hospital discharge.
Background: Despite a majority of persons receiving hospice care in their homes, there are gaps in understanding how to facilitate goals of care conversations between persons with heart failure and healthcare providers. Aim: To identify barriers and facilitators which shape goals of care conversations for persons with heart failure in the context of home hospice. Design: A qualitative descriptive study design was used with semi-structured interviews. Setting/participants: We conducted qualitative interviews with persons with heart failure, family caregivers, and interprofessional healthcare team members at a large not-for-profit hospice agency in New York City between March 2018 and February 2019. Results: A total of 39 qualitative interviews were conducted, including with healthcare team members (e.g. nurses, physicians, social workers, spiritual counselors), persons with heart failure, and family caregivers. Three themes emerged from the qualitative interviews regarding facilitators and barriers in goals of care conversations for better decision-making: (1) trust is key to building and maintaining goals of care conversations; (2) lack of understanding and acceptance of hospice inhibits goals of care conversations; and (3) family support and engagement promote goals of care conversations. Conclusion: Findings from this study suggest that interventions designed to improve goals of care conversations in the home hospice setting should focus on promoting understanding and acceptance of hospice, family support and engagement, and building trusting relationships with interprofessional healthcare teams.
Background: Most schizophrenia patients are supported by main informal caregivers at home in China. This study aims to investigate the further needs of social supports for main informal caregivers of schizophrenia patients and to analyze influencing factors on the awareness and utilization of social supports in Beijing. The results of this study could potentially act as reference for health professionals to implement appropriate and effective support programs. Methods: A mixed-methods approach was used in this study. Awareness, utilization and influencing factors of social supports for main informal caregivers were investigated using questionnaires in 6 urban districts in Beijing. Meanwhile, individual in-depth interviews with 10 main informal caregivers from the urban districts of Beijing were conducted to identify the caregivers' perspective on social supports and their further needs. Results: Quantitative results showed that although the government provided multi-channel resources for schizophrenia patients and their families, awareness and utilization of the resources such as rehabilitation and relevant subsidies were less than 10.0 and 5.0% respectively. Most caregivers in in-depth interviews expressed that they had negative experiences with respect to obtaining social supports, and they emphasized that more support would be needed in terms of financial support, respect, and rehabilitation institutions. Conclusions: The awareness and utilization of social supports are low for main informal caregivers of schizophrenia patients. More services and improved public attitudes are needed for schizophrenia patients and their caregivers.
The COVID-19 pandemic has impacted everyday life in the United States and around the world. Considering persons with mild symptoms may recover at home, education for caregivers is critical. They need instruction on how to care for a family member with COVID-19 and how to prevent themselves from getting the virus.
The article discusses the need for caregivers to receive instruction on how to care for a family member with COVID-19 and how to prevent themselves from getting the virus. Topics mentioned include the use of over-the-counter medication for relief of fevers, responsibility of caregivers to practice a certain amount of distancing from a person with COVID-19, and disinfection of electronics with appropriate device-approved solutions.
Objective: To describe the experiences and needs of caregivers of persons with dementia during the COVID-19 pandemic and lockdown in a city in India. Design: Qualitative study using a telephonic semistructured interview. Setting: A specialist geriatric outpatient mental health service based in a nongovernmental organization in Chennai, India. Participants: A purposive sampling of family members of persons with dementia registered in the database and seen within the previous 6 months. Results: Thirty-one caregivers participated. Thematic analysis of the data showed two sets of issues that the caregivers of persons with dementia faced in their experiences during the pandemic. The first set was unique to the caregivers that directly related to their caregiving role, while the second set did not relate directly to their caregiving role. These two sets also appeared to have a two-way interaction influencing each other. These issues generated needs, some of which required immediate support while others required longer-term support. The caregivers suggested several methods, such as use of video-consultations, telephone-based support and clinic-based in-person visits to meet their needs. They also wanted more services postpandemic. Conclusion: Caregivers of persons with dementia had multiple needs during the pandemic. Supporting them during these times require a pragmatic multilayered approach. Systemic changes, policies and frameworks, increased awareness, use of technology, and better access to health are necessary.
During the current global public health emergency, clinicians may likely struggle to meet the psychological, spiritual, social, and emotional needs of patients and family caregivers. [...]the burnout and existential distress experienced by healthcare professionals worldwide prior to COVID-19 will likely increase significantly amid the current pandemic (National Academies of Sciences, Engineering, and Medicine, 2019; Parks, 2020; Pessin et al., 2015). Responding to suffering during COVID COVID-19 is magnifying a collective fear and anxiety about impending destruction, as mortality rates rise steadily and we learn more about healthcare system capacity constraints, the possibilities of resource rationing and blanket do-not-resuscitate orders, and low survival rates linked to advanced stages of COVID-19. The clinical progression of COVID-19 for many patients has escalated so quickly there has been little time for patients or family caregivers to discuss the reality of the disease, adjust to the caregiving role, clarify goals of care, or create a legacy as life ends. Given the unique, high-risk vulnerabilities of seriously ill patients and those at the end of life who are COVID-19 positive, many palliative care organizations are guiding clinicians to employ presence, use deep listening skills, and promote cultures of professionalism and calm in interactions with patients, families, and colleagues (CAPC, www.capc.org; End-of-Life Nursing Educational Consortium, ELNEC, www.aacnnursing.org/ELNEC; National Hospice and Palliative Care Organization, NHPCO, www.nhpc.org; VitalTalk.org, www.vitaltalk.org).
Purpose This study aimed to examine correlates of caregiver burden and health-related quality of life (HRQoL) among primary family caregivers of individuals with schizophrenia in inpatient psychiatric rehabilitation facilities. Methods A cross-sectional study was conducted with 157 Taiwanese primary family caregivers of individuals with schizophrenia residing in inpatient psychiatric facilities. Measures included socio-demographic questionnaires and clinical information, Mutuality Scale, Family Crisis-Oriented Personal Evaluation Scales, Zarit Burden Interview, and World Health Organization Quality of Life-brief version. To describe the degree of caregiver burden and domains of HRQoL, descriptive statistics were computed. Independent sample t test, one-way analysis of variance, and Pearson's correlation analysis followed by multiple regression analyses were performed to determine correlations and relationships between characteristics of patients and primary family caregivers with caregiver burden and domains of HRQoL. Results Primary family caregivers experienced mild to moderate caregiver burden and poor HRQoL. Primary family caregivers who were older and unemployed, caring for patient's severe psychiatric symptoms, and had low monthly incomes, decreased mutuality, and fewer family coping strategies were associated with greater caregiver burden and poor HRQoL. Greater mutuality and family coping strategies of reframing and seeking spiritual support were the most significant factors in improving caregiver burden and all domains of HRQoL, respectively. Conclusion Family-focused interventions for caregivers of institutionalized persons with schizophrenia that include psychological support and peer support groups are recommended to enhance mutuality and family coping strategies, reduce caregiver burden, and improve HRQoL.
Background: Immune and targeted therapies continue to transform treatment outcomes for those with metastatic melanoma. However, the role of palliative care within this treatment paradigm is not well understood. Aim: To explore bereaved carers' experiences of immune and targeted therapy treatment options towards end of life for patients with metastatic melanoma. Design: An interpretive, qualitative study using a social constructivist framework was utilised. Interviews were recorded, transcribed and analysed using grounded theory methods. Setting/participants: Participants (n = 20) were bereaved carers of patients who had received some form of immune and/or targeted therapy at one of three Australian metropolitan melanoma treatment centres. Results: Carers struggled to reconcile the positive discourse around the success of immune and targeted therapies in achieving long-term disease control, and the underlying uncertainty in predicting individual responses to therapy. Expectations that immune and targeted therapies necessarily provide longer-term survival were evident. Difficulty in prognostication due to clinical uncertainty and a desire to maintain hope resulted in lack of preparedness for treatment failure and end of life. Conclusion: Immune and targeted therapies have resulted in increased prognostic challenges. There is a need to engage, educate and support patients and carers to prepare and plan amid these challenges. Educational initiatives must focus on improving communication between patients, carers and clinicians; the differences between palliative and end-of-life care; and increased competency of clinicians in having goals-of-care discussions. Clinicians must recognise and communicate the benefit of collaborative palliative care to meet patient and family needs holistically and comprehensively.
Background People with intellectual disabilities are living longer, with family homes and family caregivers increasingly identified as a key support to this ageing population of people with intellectual disabilities. Method This systematic review sets out existing evidence from empirically evaluated intervention studies of future care planning for adults with intellectual disability by family carers. Results This systematic review identified a scarcity of systematic approaches to future care planning for adults with intellectual disabilities and their family carers. However, evidence from the review suggests positive outcomes for families once they engage in a future planning process. Conclusions Contemporary social policy orientation, which emphasizes reliance on families to provide care, along with an ageing population of people with intellectual disabilities, and diminishing caring capacity within family networks, suggests an urgent need for a more expansive research base that evaluates approaches to supporting adults with intellectual disabilities and their family carers to plan for their futures.
The research illuminates the lived experiences of student carers across Scotland’s colleges and universities, including the perspectives of those supporting them. Through an investigation of the challenges student carers face, and the barriers to accessing support, the research makes recommendations and suggestions to improve the studying experience for carers.
Key points
Increased longevity means that an increasing proportion of people living with a learning disability are aged 45 and over and are transitioning into older age/retirement. It also means that ageing family members are increasingly playing an extended caregiving role into later life. A small scale study was carried out in the New Forest, Hampshire during 2018-19. Twenty-one older carers (5 were male) were interviewed about their experiences of caring for their older adult family members with learning disabilities and/or autism. The average age of the carers was 75 though 20% of the sample were over 80 years old.
Key findings:
Older carers are struggling to continue to care for their loved ones. Four main themes described their struggles:
1. Transition to retirement was felt to be a misnomer in the face of continuing responsibilities and duties to care and/or manage care. Little respite was available to take a break, take stock, or just do the things that most other ‘retired people’ do.
2. The Care Act 2014, despite its laudable goals, is yet to be applied sufficiently well to make a difference to the lives of people with learning disabilities and/or autism or their carers who took part in this study.
3. Challenges with social service provision including lack of continuity of social worker input, variable and declining levels of expertise, and pejorative attitudes towards carers appears to be worsening. That said, carers are understanding of the pressures on health and social care and are willing to work with them to improve the situation.
4. Carers’ fears for the future as they contemplate who will care for their loved one once they are no longer able to care for them.
There is a need for age-appropriate housing, weekend activities for people with learning disabilities, and respite for carers. Transformational change which includes trust-building and co-production between health and social services and carers is needed to improve relationships between the parties. Meaningful partnerships between social workers and carers will reduce the problem of the frequent need of carers to urge social services to provide adequate care and support. Information on options for people with learning disabilities transitioning into old age as well as practical support will help reduce the risk of crisis situations happening when older carers can no longer care.
This is an open letter to acknowledge the essential and increasingly challenging role unpaid family carers are playing in the COVID-19 pandemic. The letter is written by members of the CAREWELL team, a HRB-funded project that aims to promote health and self-care behaviours among working family carers. Family carers provide care to family and friends in the community who need support due to old-age, disability and chronic illness. In many cases, family carers are supporting those who are considered most at risk in this pandemic meaning carers must reduce their own risk of infection in order to protect their dependent family members. The temporary reduction of some home care services, as well as school and creche closures, means that family carers are providing increased levels of care with little or no support. At a time when both worlds of work and care have been dramatically transformed, we wish to shed light on those who are currently balancing paid employment with a family caregiving role. We argue that there is much to be learned from the recent work restrictions that could benefit employees, including working family carers, beyond this pandemic. We also wish to build on the potential positives of a transformed society and encourage policy makers and employers to focus on what is currently being implemented, and to identify which measures could be used to create a bedrock of policies and practices that would offer robust and effective support to family carers. It is hoped that family carers will receive greater recognition for the significant role they play in society, providing essential care and alleviating the strain on health and social care systems, both during and post the COVID-19 pandemic.
Research Aim: This aim of this research is to explore how the experiences and needs of people with dementia and carers have changed throughout the COVID-19 pandemic and to understand how these needs can be appropriately addressed. Summary: This report presents the findings of national research undertaken by The Alzheimer Society of Ireland (ASI) between 8th and 26th June 2020, which explored how people with dementia and their carers are coping during COVID-19 and to understand their challenges and needs. This report follows on from a national survey carried out at the start of April 2020, when dementia services ceased operating and COVID-19 restrictions were imposed.
Excluding family caregivers and their goals from healthcare thinking and system design has contributed to their “failure to thrive.” Family caregivers are diverse, with dynamic, enduring, and variable life course care trajectories that are largely ignored. Using a co-design approach, caregivers prioritized their goals across seven life domains in an on-line survey. Physical, mental, and emotional health goals were top priorities across all ages. However, care-related goals were not caregivers’ highest priority. Goals related to financial well-being, social connections, employment, education, and care were variable across ages. Our findings suggest that transforming health and continuing care systems begins with recognizing variability of caregivers’ goals across their life courses. Adopting a co-design approach with family caregivers may serve as a model to develop a collaborative health and continuing care system. One that recognizes and supports family caregivers to achieve their goals, so that they not only survive but thrive.
In mid-March Disability day services closed to people with intellectual disabilities with a small number of exceptions. In May and early June, Inclusion Ireland surveyed the people who use these services and their families on the impact the closure of service has had on them and the supports they have received in this time. In total, 291 family members answered our survey and 55 people with intellectual disabilities responded to an easy-to-read version of our survey giving a total response of 346. Peoples engagement with their service over the Covid period has been variable with some people reporting regular contact, daily online activities, and some face to face support while more than half of respondents have had very little meaningful contact at all. The closure of day services impacting on the mental health of people cannot be underestimated. A significant number of respondents reported increased loneliness, increased anxiety, and increased challenging behaviour or anger. At the same time more that 20% of people reported being happier during the lock down. As services reopen and start to support people with intellectual disabilities in a ‘different or remote’ manner the needs of people with high support needs and complex disabilities must be considered carefully. This group of people tell us they cannot access virtual technology even with one on one family support to do so.
Aims: The study aims to analyse the tensions and the challenges of dementia care that are experienced by people with dementia and their family caregivers in China. Background: China has the largest dementia population in the world; however, dementia care services and related support services are still developing. Caring for a person with dementia is very challenging, as evidenced by many studies. As the majority of people with dementia are looked after by their family in their homes in China, it is very important to understand what people with dementia and their family caregivers are experiencing in the context of dementia care services that are in the process of developing. Design: Interpretative phenomenological analysis (IPA) was used. Method: Semi-structured individual interviews with 24 participants (10 people with dementia and 14 unrelated family caregivers) recruited from a mental health centre in Shandong Province. Findings: Three main themes emerged that highlighted unmet need: (a) Lack of support services, (b) Insufficient institutional care and (c) Social attitude and social stigma towards dementia. Conclusions: These themes reveal the challenges that the participants face in the context of dementia care services that are in the process of development in China; and how their lived experiences have been affected by the constraints of social support, public services, healthcare access, long-term care services and social stigma. Implications for practice: This study highlights the tensions that are identified by people with dementia and family caregivers. The research recommends that more support services would be beneficial for this group and would also enhance family support dementia care in China. Looking after an older family member is a culturally, socially and legally embodied norm in Chinese society, so it is important to address education for dementia awareness and the sustainability of family support care services in China by providing dementia services and resources to support both people with dementia and family caregivers.
The increasing number of older adults with cognitive deficits, including dementia, poses a major challenge for public health in the United States. At the same time, the limited number of informal and professional caregivers available to support this rapidly growing population is of mounting concern. Not only does population aging limit the number of potential caregivers, but extant caregivers often lack skills to provide quality care. The integration of intelligent assistive technologies (IAT), including devices, robotics and sensors in many forms, into eldercare, may offer opportunities to reduce caregiver burden and enhance healthcare services while improving the quality of life among older adults with mild to severe cognitive deficits. However, many caregivers and their care recipients lack access to these technologies. The reasons for this reduced access are multifactorial, including the digital divide, sociocultural factors, and technological literacy. This mini review investigates the emerging use of IAT available to caregivers and older adults with cognitive deficits and explores the challenges in socioeconomic status and technological literacy as well as ethical and legal implications that should be considered in the design and development of IAT for older adults with cognitive deficits. Drawing from existing literature, it will suggest frameworks for design and adoption aimed at increased and equitable access for this vulnerable population.
Background: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers' experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time. Methods: An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014 and 16 using serial participant observations (n = 33) and in-depth interviews (n = 11). Thematic content analysis was used to analyse the data. Results: Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers' physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time. Conclusions: These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs.
Background Most family caregivers of stroke patients in Malaysia do not receive adequate prior preparation or training. This study aimed to determine levels of patient positioning knowledge and caregiving self-efficacy among caregivers of stroke patients. Methods This cross-sectional study was conducted at an urban teaching hospital involving 128 caregivers of stroke patients. The caregivers were conveniently sampled and completed the data collection forms, which comprised their socio-demographic data, patients' functional status, the Caregiving Knowledge For Stroke Questionnaire: Patient Positioning (CKQ-My(C) Patient Positioning) to measure caregiver's knowledge on patient positioning, and the Family Caregiver Activation Tool (FCAT(C)) to measure caregivers' self-efficacy in managing the patient. Descriptive and multivariate inferential statistics were used for data analysis. Results Among the caregivers sampled, 87.3% had poor knowledge of positioning (mean score 14.9 +/- 4.32). The mean score for FCAT was 49.7 +/- 6.0 from a scale of 10 to 60. There was no significant association between knowledge on positioning and self-efficacy. Multiple linear regression showed that caregivers' age (B = 0.146, p = 0.003) and caregiver training (B = 3.302, p = 0.007) were independently associated with caregivers' self-efficacy. Conclusion Caregivers' knowledge on the positioning of stroke patients was poor, despite a fairly good level of self-efficacy. Older caregivers and receiving caregiver training were independently associated with better caregiver self-efficacy. This supports the provision of caregiver training to improve caregiver self-efficacy.
Objective: Surrogate decision-makers play an increasingly important role in the lives of older adults who have lost their ability to make decisions. Currently, there is a lack of evidence to support family surrogates in making a variety of decisions. Additionally, a greater understanding of family caregivers’ experiences and perspectives toward making surrogate decisions is needed. Methods: This study employed a qualitative systematic review and thematic synthesis of the research evidence using the methodologies of the Joanna Briggs Institute (2014) and Thomas and Harden (2008). Results: Decisions were classified per three main types: intensive care treatment, end-of-life treatment, and placement. Six themes were identified concerning surrogates’ experiences: struggle and reluctance, seeking reassurance, communication with healthcare professionals, family support, older adults’ wishes, and negative impact. Conclusion: Family surrogates often lack adequate preparation and education regarding decision-making. Quality communication between surrogates and healthcare providers helps reduce the anxiety and guilt experienced when making surrogate decisions. Further research is required to elucidate these experiences with more cultural and racial nuances. Practice implications: This review informs healthcare providers’ awareness of the challenges faced by surrogates and fosters improved surrogate decision-making experiences.
The focus of this study was to identify challenges to family eldercare provision from the perspectives of both caregivers and community stakeholders. This qualitative study used data from 306 family caregivers and 116 stakeholders (aging, social, and health service professionals who work with older adults and their families) in North Dakota. Data sources included an American Association of Retired Persons-ND survey of 110 caregivers, a survey by the ND Family Caregiver Support Program (196 participants), and a Statewide Caregiving Stakeholder Survey (116 participants). Thematic analysis identified five themes: (a) financial burden of providing eldercare, (b) insufficient access to respite care, (c) difficulty finding and navigating available services and programs, (d) lack of knowledge and training on care provision, and (e) challenges related to environmental context of caregiving. Implications for working with family caregivers and developing policies for eldercare are discussed.
Due to the complexity of heart failure (HF) and its treatment process, a high level of patient and informal caregiver engagement is required for management results. We aimed to explore the views of HF patients, informal caregivers, and healthcare professionals about personal experiences, perceived needs, and barriers to optimal HF management. A qualitative study using semi-structured interviews with HF patients (n = 32), their informal caregivers (n = 21), and healthcare professionals (n = 5) was conducted in the outpatient HF clinic in Slovenia in 2018. A content analysis method was used to analyze the data. Negative emotional response to disease and its limitations (especially the inability to continue with work) and changes in family roles were the most prevalent topics regarding the impact of HF on livelihood. Among the most common barriers to HF self-care, were the difficulties in changing lifestyle, financial difficulties due to the disease, traditional cuisine/lack of knowledge regarding a healthy diet and lack of self-confidence regarding physical activity. Despite psychological and social difficulties due to HF being highlighted by patients and informal caregivers, only healthcare professionals emphasized the need to address psychosocial aspects of care in HF management. Established differences could inform the implementation of necessary support mechanisms in HF management.
This report produced by The ASI summarises the results of three surveys that were distributed to people living with dementia, family carers, and Community Champions (Understand Together). The aims of this report are threefold:
1. To identify the current challenges experienced by people with dementia and family carers in the current Covid-19 Pandemic through simple surveys.
2. To bring together suggestions from people with dementia and family carers of how ASI can continue to support them in lieu of suspended services.
3. To communicate the above work in an accessible way to the committee in such a way that will enable the committee to review and shortlist the evidence in a timeline manner.
Results are presented for each individual cohort: People living with dementia, Family Carers, and Community Champions.
Objective: Vietnam, like many low/middle income countries, lacks the infrastructure to provide information and psychosocial support to cancer patients and their carers. We undertook a codesign process to develop a web resource to inform and support carers. Methods: Cancer carers and health care professionals' perspectives regarding information and support needs and the content and delivery of web-based supports, were explored via five focus groups (n = 39) and semistructured interviews (n = 4) in Vietnam in 2018. Focus groups and interviews were transcribed verbatim and analyzed using thematic analysis. Resource components were verified at two joint stakeholder workshops attended by 40 participants. Results: The development of a web-based resource was identified as an urgent need. A web-based resource was viewed as a suitable interface to provide support across regions in a sustainable way. The structure of the resource should include peer-led videoed advice, signposting to services and include official endorsement. The potential resource components identified includes (a) cancer causes and consequences; (b) hospital administration, treatment processes, and prices; (c) daily living; (d) emotional and supportive information; (e) skills training; and (f) nutrition and traditional medicine. Conclusion: The development of a web-based resource to deliver information and psychosocial supports to cancer carers and by-proxy patients is an urgent requirement in Vietnam. Next steps will include resource development and testing the resources ability to address the unmet needs of cancer carers and patients. A web-based resource to support cancer carers has the potential for application to other developing countries.
Researchers examined questions of caregivers for individuals with posttraumatic stress disorder (PTSD) by means of a) a content analysis and b) a thematic analysis of posts on an online peer support forum. A total of 292 question posts were analyzed. Content analysis categories were based on previous research and included question motivation (cognitive, emotional, and social) and content (symptoms, prognosis, medication/treatment, coping, support, and seeking reassurance). Three newly identified themes (PTSD behavior identification and response, interpersonal interactions with trauma survivors, and healthcare system concerns) were generated through the thematic analysis. These overarching themes regarding information needs, and their subcategories, are discussed in detail. This study provides a preliminary examination of the information needs of PTSD caregivers, offers suggestions for future research, and discusses implications for the healthcare system.
The lives of healthy and sick people are structured according to a variety of conceptual matrices. One of these matrixes consists of philosophical, spiritual, and religious convictions, being this especially relevant in the process of the end of life. The objective of the study is to understand the meaning that individuals at the end of life and the relatives of such individuals award spiritual and/or religious beliefs through an examination of caregiver narratives. Multicentric study was developed that used a qualitative design and a phenomenological approach. The study was conducted in the autonomous community of Andalusia, specifically in the provinces of Almeria, Malaga, Seville, Granada, and Huelva. The selection method was purposive sampling. Caregivers who had lost a relative in a period between 2 months and 2 years previously and who were not in a process of pathological grieving were selected for inclusion in the study. The method involved five discussion groups and 41 in-depth interviews, with a total of 87 participants. A change of paradigms is necessary in which, among other elements, the focus of palliative care is centered on the ability to address these spiritual needs, and healthcare professionals are trained to assist in the provision of such care. Another important consideration is the inequality of spiritual supported provided by clergy from various religions. At least in the cultural context of the research, Catholic chaplains were the only institutional figures whose presence was assumed necessary by health organizations. However, the cultural and/or religious diversity in the autonomous community in which the study was conducted is increasingly broad and complex. It appears necessary to incorporate a variety of clergies in health units so that all patients may find support, whether in terms of companionship or celebration.
Background: Recent advances in the development of immunotherapy drugs have resulted in durable responses and improved overall survival for a proportion of patients with advanced melanoma; however, toxicities can be potentially life-threatening. The patients' family and friends (carers) are relied upon to support patients at home post treatment; however, we know little about their experiences. Objectives: This study aimed to understand the experiences of patients with advanced melanoma who received immunotherapy and their carers; and to explore the impact of immunotherapy treatment on patients' and carers' quality of life (QoL). Methods: A cross-sectional, exploratory design was employed. Semi-structured interviews were conducted with patients: diagnosed with stage IV melanoma, attending an Australian public cancer hospital, had completed or were receiving treatment with immunotherapies; and the people caring for them at home. Results: Patients (n = 22) described how immunotherapy impacted emotional health, functional ability; and had damaging economic consequences. Fatigue was reported consistently as having a considerable negative influence across all domains of QoL. Carers (n = 9) were anxious about their ability to correctly identify, report and manage side effects at home. Conclusions: Results demonstrate how immunotherapy can impact the QoL of both patients and carers, either directly through toxicities or indirectly through mechanisms such as stress, financial toxicity, or fatigue that limits participation in life activities. Implications for Practice: Supportive care resources and interventions are needed for those receiving immunotherapy to minimise negative impacts on QoL. Carers likewise require better preparation and information to assist in identifying potential treatment toxicities and ensure patient safety.
Extract:
Family caregivers play a pivotal role in supporting the efforts of healthcare providers for individuals with chronic diseases or disabling conditions ( Chi & Demiris, 2017 ). According to the National Alliance for Caregiving, in 2015 approximately 43.5 million adult family caregivers in the United States had provided unpaid care to family members in the previous 12 months ( National Alliance for Caregiving & AARP Public Policy Institute, 2015 ). As the population of aging Americans with chronic conditions continues to increase, the demand for family caregiver assistance will further rise ( Chi & Demiris, 2017 )...
Rationale: Research has extensively examined the adverse outcomes of being family support provider also known as a family caregiver, of someone with spinal cord injury (SCI) such as psychological distress, poor health, and burden. Despite clear evidence of the negative impact of this social role, few interventions exist aiming to support family support providers of people with SCI. Objective: This scoping review aimed to guide future intervention development by identifying the components necessary to develop an intervention to support SCI family support providers using the Behaviour Change Wheel (BCW). Methods: Electronic databases (CINAHL, PsycINFO, Medline, Embase) were searched in May 2017. Articles relating to outcomes and/or behaviours of support providers of people with SCI were identified. Intervention components of the BCW, including behaviours, factors influencing behaviours, intervention content, and evaluation methods, were extracted from included articles. Results: Of the 59 included articles, most emphasized the outcomes of being a support provider but provided little evidence of behaviours, which may influence such outcomes. The most commonly identified behaviours included engaging in leisure time or daily activities, problem-solving, and providing support. Very few measures were used to measure engagement in behaviours objectively. The literature suggests that behaviours are often influenced by family support providers' physical and social environments. However, barriers may vary between behaviours and contexts. Conclusion: The results of this review show that there are many viable behavioural targets for intervention. Therefore, intervention efforts may need to be tailored to individuals' needs. A promising intervention approach may be to use a theory which promotes change in the ecological context of family support providers while encouraging behavioural strategies to overcome individual barriers. Future research should further examine the factors that influence specific behaviours to more comprehensively understand the context of the behaviour as well as effective intervention strategies to promote change.
Death in America is changing from hospital to home, which demands complex skills by family caregivers. However, information from family members about the challenges of providing home hospice care until death is scant. To understand the challenges a family caregiver confronts when he/she decides to deliver hospice care and during the actual delivery of the hospice care, we used descriptive phenomenology methods to document the experience of 18 family caregivers as they delivered home hospice care. We learned the decision to begin home hospice was made by a physician, followed frequently by family resistance and refusal to assist. Family caregiver burden is enormous, compounded by fatigue, sleeplessness, and confusion on issues such as morphine dosage and administration. The stages and process of dying, such as transition, baffled family caregivers. All family caregivers agree financial and emotion support, empathic advocacy, and affirmation of their worth are needed to sustain them to care for the dying. The peacefulness following offering a home death comes at a high price to family caregivers. Evidence is needed from a randomized controlled trial as to effectiveness of advocacy support for family caregivers to increase their resiliency and higher probability of a good death for the dying.
Objectives: To describe unmet needs of caregivers of hospitalized older adults during the transition from hospital back home, and identify subgroups with different needs. Methods: Patients and family caregivers were recruited from an acute care hospital in Montreal, Canada. Measures included Instrumental Activities of Daily Living (IADL), Hospital Anxiety and Depression Scale (HADS), Zarit burden scale, and Family Inventory of Needs. Dimensions of unmet needs were explored with principal component analysis; regression tree models were used to identify subgroups with different unmet needs. Results: A total of 146 patient-caregiver dyads were recruited. Three categories of caregiver unmet needs were identified: patient medical information; role clarity and support; and reassurance. Caregiver subgroups with highest unmet needs were those with high burden of care plus depressive symptoms (n = 46) and those caring for patients with low IADL scores (n = 10). Discussion: Caregivers with high burden and depression are those with the greatest unmet needs during the care transition.
Background: Frailty is the leading prognosticator for poor outcomes and palliative care among older adults. Delivery of negative prognostic information entails potentially difficult conversations about decline and death. Objective: The study aims were to: 1) examine hospitalized older adults' and family caregivers' receptivity to general (vs. individualized) prognostic information about frailty, injury, and one-year outcomes; and 2) determine information needs based on prognostic information. Design: Provision of general prognostic information followed by semi-structured interview questions. We deductively analyzed qualitative data within the context of problematic integration theory. Setting: An academic medical center in the Southeast region of the U.S. Participants: Purposive sampling was utilized to obtain a distribution of patients across the frailty continuum (non-frail [N=10], pre-frail [N=9], frail [9=6]). Twenty-five older adults (≥ age 65) hospitalized for a primary injury (e.g. fall) and 15 family caregivers of hospitalized patients were enrolled. Methods: Hospitalized older patients and family caregivers were shown prognostic information about one-year outcomes of injured older adults in the form of simple pictographs. Semi-structured interview questions were administered immediately afterwards. The interviews were audio-recorded, transcribed, and analyzed using qualitative content analysis. Demographic and medical information data were used to contextualize the responses during analysis. Results: Overall, participants (patients [56%], caregivers [73%]) were open to receiving prognostic information. A small number of family caregivers (N=3) expressed reservations about the frankness of the information and suggested delivery through a softer approach or not at all. Qualitative data was coded using categories and constructs of problematic integration theory. Four codes (personalizing the evidence, vivid understanding, downhill spiral, realities of aging) reflected probabilistic and evaluative orientation categories of problematic integration theory. One code (fatalism vs. hope) represented manifestations of ambivalence and ambiguity in the theory; and another code (exceptionalism) represented divergence and impossibility. Two codes (role of thought processes, importance of faith) reflected forms of resolutions as described in problematic integration theory. Information needs based on prognostic information revealed four additional codes: give it to me straight, what can I do? what can I expect? and how can I prevent decline? A consistently reported desire of both patients and caregivers was for honesty and hope from providers. Conclusion: This study supports the use of general prognostic information in conversations about aging, injury, frailty and patient outcomes. Incorporating prognostic information into communication aids can facilitate shared decision making before end-of-life is imminent.
Background: People with pulmonary fibrosis often experience a protracted time to diagnosis, high symptom burden and limited disease information. This review aimed to identify the supportive care needs reported by people with pulmonary fibrosis and their caregivers. Methods: A systematic review was conducted according to PRISMA guidelines. Studies that investigated the supportive care needs of people with pulmonary fibrosis or their caregivers were included. Supportive care needs were extracted and mapped to eight pre-specified domains using a framework synthesis method. Results: A total of 35 studies were included. The most frequently reported needs were in the domain of information/education, including information on supplemental oxygen, disease progression and prognosis, pharmacological treatments and end-of-life planning. Psychosocial/emotional needs were also frequently reported, including management of anxiety, anger, sadness and fear. An additional domain of “access to care” was identified that had not been specified a priori; this included access to peer support, psychological support, specialist centres and support for families of people with pulmonary fibrosis. Conclusion: People with pulmonary fibrosis report many unmet needs for supportive care, particularly related to insufficient information and lack of psychosocial support. These data can inform the development of comprehensive care models for people with pulmonary fibrosis and their loved ones.
OBJECTIVE: Investigation of drug administration problems, respective causes, and needs for assistance. METHODS: Focus group discussions with patients, family caregivers, and nurses were conducted using a semi-structured interview guideline for a focused exploration of the participants' drug administration experiences and perceived needs for assistance. All discussions were audio-recorded and video-recorded, verbatim transcribed, and analyzed according to Mayring's qualitative content analysis. RESULTS: In total, 6 focus group discussions were conducted. The qualitative content analysis revealed that patients and family caregivers frequently trivialized drug administration, were unaware of errors, and primarily blamed the dosage form of causing administration problems. Nurses also considered health-care system-related conditions and patient factors as potential causes of administration problems. CONCLUSIONS: The administration problems and perceived causes were multifaceted and often directed toward inappropriate dosage forms or health-care system-related conditions rather than critically questioning the medicine user's administration skills. To increase medicine users' motivation to scrutinize wrong administration practices, health-care professionals should consider individual perspectives on administration problems and perceived causes, assist medicine users' to identify the true cause of a distinct problem, and provide individualized support.
BACKGROUND: Persons with dementia (PwD) need support to remain in their own homes as long as possible. Family caregivers, homecare nurses and general practitioners (GPs) play an important role in providing this support, particularly in rural settings. Assessing caregiver burden is important to prevent adverse health effects among this population. This study analysed perceived burden and needs of family caregivers of PwD in rural areas from the perspectives of healthcare professionals and family caregivers. METHODS: This was a sequential explanatory mixed methods study that used both questionnaires and semi-structured interviews. Questionnaires measuring caregiver burden, quality of life and nursing needs were distributed to the caregivers; health professionals received questionnaires with adjusted items for each group. Additionally, in-depth qualitative interviews were carried out with eight family caregivers. RESULTS: The cross-sectional survey population included GPs (n = 50), homecare nurses (n = 140) and family caregivers (n = 113). Healthcare professionals similarly assessed the psychosocial burden and stress caused by behavioural disturbances as most relevant. Psychological stress, social burden and disruptive behaviour (in that order) were regarded as the most important factors from the caregivers' perspective. It was found that 31% of caregivers reported permanent or frequent caregiver overload. Eight themes related to caregiver burden emerged from the subsequent interviews with caregivers. CONCLUSIONS: Professional support at home on an hourly basis was found to be highly relevant to prevent social isolation and compensate for lack of leisure among caregivers of PwD. Improvement of interprofessional dementia-related education is needed to ensure high-quality primary care.
This article presents a comprehensive conceptual framework designed to foster research in the changing needs of caregivers and persons with dementia as they move through their illness trajectory. It builds on prior theoretical models and intervention literature in the field, while at the same time addressing notable gaps including inadequate attention to cultural issues; lack of longitudinal research; focus on primary caregivers, almost to the exclusion of the person with dementia and other family members; limited outcome measures; and lack of attention to how the culture of health care systems affects caregivers' quality of life. The framework emphasizes the intersectionality of caregiving, sociocultural factors, health care systems' factors, and dementia care needs as they change across time. It provides a template to encourage longitudinal research on reciprocal relationships between caregiver and care recipient because significant changes in the physical and/or mental health status of one member of the dyad will probably affect the physical and/or mental health of the partner. This article offers illustrative research projects employing this framework and concludes with a call to action and invitation to researchers to test components, share feedback, and participate in continued refinement to more quickly advance evidence-based knowledge and practice in the trajectory of dementia caregiving.
Background: Despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services. Aim: To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory. Design: A systematic review of qualitative research conducted using Thematic Synthesis – PROSPERO registration CRD42017075311. Data Sources: Four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality. Results: A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients’ and carers’ experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement. Conclusion: The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change.
Background: Advances in screening and treatment approaches alongside changing population demographics have the potential to influence the experience of living with lung cancer. There is potential for improved outcomes and quality of life for those diagnosed with the disease. Objectives: This exploratory study was undertaken to gain insight regarding the current experiences of individuals diagnosed with lung cancer and their family caregivers given the evolving changes in lung cancer screening and treatment. Method: A qualitative descriptive design was utilized and in-depth interviews conducted with 8 survivor and 4 family caregivers. Interviews were subjected to a conventional content analysis. Results: Participants identified challenges related to being diagnosed in a timely manner, being told the diagnosis with compassion, coping with multiple symptoms during treatment, and regaining a new normal following treatment. Dealing with late effects of treatment (ie, fatigue, shortness of breath, neuropathy) was frustrating when individuals were not aware the effects would emerge or had not had relevant self-management instructions. Conclusions: Lung cancer survivors constitute an emerging cadre of survivors. Attention is needed to their preparation for, and coping with, the survivorship transition.
A number of recent studies have highlighted the challenges facing young people as a result of the COVID-19 pandemic. Like their peers, young people aged 16 to 25 who are caring for a family member or friend have experienced significant change and instability during this unprecedented period.
During the peak of the COVID-19 lockdown, Carers NSW conducted online interviews and focus groups with 28 young carers to better understand their experiences and support needs and to learn how to engage with them more effectively. This summary report includes powerful stories of young people caring for loved ones while juggling study, work, family and social responsibilities.
This report shares insights from young carers across a range of themes, including education, employment, service provision and relationships, embedding the young carer voice throughout. These insights will help to inform ongoing and future service provision, research and systemic advocacy conducted by Carers NSW and our partners and stakeholders.
A review of existing research literature (see Appendix I) and internal consultation with Carers NSW staff working with young carers, conducted in the scoping phase of this project, identified that young carers are often isolated and experience socio-economic disadvantage as a result of their caring responsibilities. However, they are often reluctant to disclose their caring responsibilities to others and commonly perceive their own needs and experiences as less important than those of the person they care for. These factors can make it more difficult for researchers and others to successfully engage with young carers.
BACKGROUND: Coping with a diagnosis of multiple sclerosis (MS) is challenging. MS is one of the most common causes of nontraumatic disability in young adults, and patients may need assistance with daily life activities. This article explores the relation between quality of life (QOL) and the perceived available social support among patients with MS and their families. METHODS: The study included 120 subjects (60 patient-caregiver dyads). The average age of the patients was 53.95 ± 10.19 years, and for caregivers, it was 50.8 ± 13.3 years. The study used 2 subscales of the Berlin Social Support Scale (perceived availability of social support and need for social support) and the World Health Organization Quality of Life questionnaire for the assessment of QOL. RESULTS: QOL in MS is lower compared with that of their caregivers in all dimensions except the social domain (P < .001, r = 0.54-0.64). A higher need for social support was experienced by caregivers. The need for support in this group is affected by 3 predictors: QOL in the environmental domain and in the physical domain as well as their subjective health. An improvement in QOL in all the domains is related to an increase of perceived available support, in both the group of patients and that of their caregivers (P < .05, ρ = 0.28-0.59). CONCLUSIONS: Perceived available support is of great importance for both patients and their caregivers to enable them to function better in the physical, mental, social, and environmental domains of their QOL, where social relationships play a predictive role.
Objectives: Family caregivers of patients requiring prolonged mechanical ventilation may experience physical and psychological morbidity associated with a protracted intensive care unit experience. Our aim was to explore potentially modifiable support needs and care processes of importance to family caregivers of patients requiring prolonged mechanical ventilation and transition from the intensive care unit to a specialised weaning centre. Research methodology/design: A longitudinal qualitative descriptive interview study. Data was analysed using directed content analysis. Setting: A 6-bed specialised weaning centre in Toronto, Canada. Findings: Eighteen family caregivers completed interviews at weaning centre admission (100%), and at two-weeks (40%) and three-months after discharge (22%) contributing 29 interviews. Caregivers were primarily women (61%) and spouses (50%). Caregivers perceived inadequate informational, emotional, training, and appraisal support by health care providers limiting understanding of prolonged ventilation, participation in care and decision-making, and readiness for weaning centre transition. Participants reported long-term physical and psychological health changes including alterations to sleep, energy, nutrition and body weight. Conclusions: Deficits in informational, emotional, training, and appraisal support of family caregivers of prolonged mechanical ventilation patients may increase caregiver burden and contribute to poor health outcomes. Strategies for providing support and maintaining family caregiver health-related quality of life are needed.
Carers, paid and unpaid, are at the forefront of our response to the Coronavirus, putting themselves at risk to protect us all. Yet, if you are a carer, for adults or children, you are more likely to be living in poverty. This is not right.
This briefing note updates our Make Care Count report which focuses on the link between care and poverty before the crisis. It describes carers’ experiences of the pandemic, prioritising the voices of carers throughout, before detailing how we can take the first steps towards ending poverty for carers in Britain.
A working list of things to be aware of/ consider in supporting informal carers (family and friends who support patients in an unpaid role) impacted by COVID-19. This is partly evidence-based and partly grounded in our combined experience of working in applied research on informal carer support needs
PURPOSE A needs assessment of family caregivers (CGs) in our gynecologic oncology clinic found that 50% of CGs report nine or more distressing unmet needs, but only 19% of patients had a documented CG. We conducted an ASCO Quality Training Program project with the following aims: (1) to identify and document primary CGs for 85% of patients within two clinic visits of a gynecologic cancer diagnosis, and (2) assess the needs of and provide interventions to 75% of identified family CGs. METHODS Plan-Do-Study-Act (PDSA) methodology and tools endorsed by the ASCO Quality Training Program were used. An interprofessional team reviewed baseline data (ie, any mention of a family CG in the electronic health record visit note; CG distress survey), defined the problem and project aims, created process maps, and identified root causes of poor CG identification and documentation. Eight successive PDSA cycles were implemented between October 2018 and March 2019 to address identified root causes. RESULTS For aim 1, CG identification increased from 19% at baseline to 57% postimplementation, whereas for aim 2, assessment improved from 28% at baseline to 60% postimplementation. Results fell somewhat short of initial goals, but they represent an important initial improvement in care. The core team has begun additional PDSA cycles to improve CG identification rates and extend the momentum of the project. CONCLUSION This project demonstrated that a CG assessment protocol can be implemented in a large, academic, gynecologic oncology clinic. Additional efforts to integrate CG identification, assessment, and intervention more fully within the clinic and electronic health record are under way.
Background: Family caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home. Methods: A Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences with caregiving. Thereafter they explained their ranking in an interview. By-person factor analysis was used to analyse the rankings and qualitative data was used to support the choice of profiles. A set of 41 family caregivers with a variety on background characteristics who currently or recently provided care for someone at the end of life at home were included. Results: Four distinct profiles were identified; profile (1) those who want appreciation and an assigned contact person; profile (2) was bipolar. The positive pole (2+) comprised those who have supportive relationships and the negative pole (2-) those who wish for supportive relationships; profile (3) those who want information and practical support, and profile (4) those who need time off. The profiles reflect different support needs and experiences with caregiving. Conclusions: Family caregivers of patients at the end of life have varying support needs and one size does not fit all. The profiles are relevant for healthcare professionals and volunteers in palliative care as they provide an overview of the main support needs among family caregivers of patients near the end of life. This knowledge could help healthcare professionals giving support.
Background Identifying learning needs is an important component of care among patients with heart failure (HF). There is a discrepancy in the level of importance of information as perceived by patients, caregivers, and nurses. No studies have been conducted to identify learning needs among patients with HF in Jordan. Objective The aim of this study was to identify the learning needs of patients with HF in Jordan from the perspective of patients, family caregivers, and their nurses. Methods A descriptive comparative design using a convenience sample of 67 patients with HF, 67 family caregivers, and 67 nurses was used. The Heart Failure Learning Needs Inventory was used to identify the learning needs. The mean scores were compared among the 3 groups and ranked by importance for each item to determine the most important areas of perceived needs for each group. Results All groups had high total Heart Failure Learning Needs mean scores: patients, 4.12 ± 0.92; caregivers, 4.14 ± 0.65; and nurses, 4.08 ± 0.54. The top priority learning need for both patients and caregivers was "the recommended daily salt intake," whereas for nurses, it was "why I am taking each medication and its side effects"; nurses significantly perceived it as more important to learn than patients and caregivers did. Younger and employed patients requested more information than other patients. Conclusions Although some similarities exist, there are important differences among the 3 groups on perceived importance of information. Understanding these differences may be critical in developing a tailored educational program for patients and caregivers and improving nursing practice.
Despite an increasing number of sources providing information and advice about dementia, those living with the condition feel inadequately informed. The reasons for this remain unclear. This study has three aims: to identify where people with dementia and their carers currently access dementia-related information from; to determine how accessible, credible and comprehensible people with dementia and their carers consider the available sources of information; and to determine how people with dementia and their carers would like to receive information. An online or postal survey was completed by 171 female and 41 male participants with a close family member or friend with dementia. Accessibility above quality held the greatest influence over an individual’s use of an information source. Participants preferred relational sources such as healthcare professionals as these were able to give individualised information, yet these were poorly accessible and lacked dementia specific knowledge. Therefore, individuals used non-relational sources such as the internet. However, increased use of the internet was linked to feeling overwhelmed by information. It was not the end result of the information search but the effort taken to reach the information that influenced participant’s perception of information gathering. Future research should look at ways of designing and providing accessible information sources that act and feel like relational contact.
Family caregivers provide substantial care for patients with advanced cancer, while suffering from hidden morbidity and unmet needs. The objectives of this review were to examine risk factors associated with caregiving for patients with advanced cancer, evaluate the evidence for pertinent interventions, and provide a practical framework for palliative care of caregivers in oncology settings. We reviewed studies examining the association of factors at the level of the caregiver, patient, caregiver-patient relationship, and caregiving itself, with adverse outcomes. In addition, we reviewed randomized controlled trials of interventions targeting the caregiver, the caregiver-patient dyad, or the patient and their family. Risk factors for adverse mental health outcomes included those related to the patient’s declining status, symptom distress, and poor prognostic understanding; risk factors for adverse bereavement outcomes included unfavorable circumstances of the patient’s death. Among the 16 randomized trials, the most promising results showed improvement of depression resulting from early palliative care interventions; results for quality of life were generally nonsignificant or showed an effect only on some subscales. Caregiving outcomes included burden, appraisal, and competence, among others, and showed mixed findings. Only three trials measured bereavement outcomes, with mostly nonsignificant results. On the basis of existent literature and our clinical experience, we propose the CARES framework to guide care for caregivers in oncology settings: Considering caregivers as part of the unit of care, Assessing the caregiver’s situation and needs, Referring to appropriate services and resources, Educating about practical aspects of caregiving, and Supporting caregivers through bereavement. Additional trials are needed that are powered specifically for caregiver outcomes, use measures validated for advanced cancer caregivers, and test real-world interventions.
Carers NSW has been closely monitoring COVID-19 developments in NSW, the ongoing government response and the wide ranging impacts the virus and associated social distancing requirements have had on carers. Carers have experienced a variety of impacts, both in relation to the people they care for and in relation to their own health and overall wellbeing. Many carers provide care and support to people who are in higher risk categories, and many are in higher risk categories themselves due to age or an existing health condition. These factors have resulted in complexities surrounding provision of care, particularly in maintaining social distancing. [...]
Carers NSW determined that it was crucial to hear directly from carers and other key stakeholders in order to gain a clear and accurate picture of the key issues, challenges and opportunities for carers during the pandemic. This report identifies the key findings of consultation conducted to inform Carers NSW service adjustments and systemic advocacy.
Carers UK carried out an online survey between 3rd April and 14th April 2020. A total of 5,047 carers and former carers responded to the survey. This included 4,830 current carers and 217 former carers. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. As not all respondents completed every question in the survey, a number of the figures given in this report, including those presented here, are based upon responses from fewer than 5,047 carers.
Of current carers responding to the survey:
A considerable evidence base exists demonstrating the high prevalence of family caregiving in the community; however, there is a paucity of in-depth research examining the impact of family caregiving on the living and employment needs of those providing this unpaid service. This study employed a qualitative interview design with purposive sampling to examine the experiences of family caregivers, in order to examine how family caregiving decisions are made, the nature and challenges of caregiving work, and living and work supports that may enhance the caregiving experience. A sample of 12 adults providing care and assistance to family members with a range of disabilities, chronic conditions and long-term illnesses were interviewed. The results showed that family caregivers ‘fall into’ the caregiving role and often continue to provide care indefinitely without pay and with little or no financial support from others. In describing the best aspects of their experience many caregivers talked about helping their care recipient remain in their home and maintain their independence. In describing the worst aspects of their experience, all referred to the living and financial challenges of the caregiving work, and many highlighted the impact of their caregiving work on their employment and career needs. In conclusion, there is a need for public policies, programs and health services in Australia to better respond to the living, financial and support needs of family caregivers as health service providers, as well as their employment, development and career needs which are seriously impacted upon by caregiving work.
Parkinson's Disease is associated with a high assistive complexity, thus generating in caregivers a burden proportional to the intensity of the care provided. This study aims to evaluate whether the stress-related level of caregivers is related to their perception of the need for healthcare education. A cross-sectional study was conducted on 69 family caregivers that completed the Stress-related Vulnerability Scale (SVS scale) with a tool of proposed interventions stratified according to caregivers' need as “nothing”, “somewhat”, “moderately” and “extremely”. A direct association between the SVS scale and the perception of the usefulness of interventions was detected, and significant differences were observed for “Caregivers tele-support group” and “Peer-led support group” interventions, thus suggesting an important role for caregivers' emotional status in considering of training courses. Caregivers are split between low vulnerability, with minimal perception of training need, and high burden state with the acute necessity of support to manage patients.
Background: MS is a common, neurological disease and it's unpredictable, progressive disabling nature can have a devastating effect on patients, their families' and carers. It is therefore important that the MS Clinical Nurse Specialist develops appropriate skills, services and professional expertise to support individuals along the disease trajectory.; Design: An integrative literature review.; Method: A systematic search of nine databases; Cinahl, Medline, Scopus, Embase, Ovid, AMED, Academic Search Complete, Web of Science, PsycINFO up to January 31, 2018. Hand searching and review of secondary references also undertaken. Reporting using the PRISMA guidelines, quality appraised (Crowe Critical Appraisal Tool) and thematic data analysis approach (Braun and Clarke 2006).; Results: Findings from the 17 studies were extracted, synthesised and analysed thematically. Three themes emerged; the MS CNS as a longitudinal care co-ordinator, a bespoke care provider, and an expert resource. The findings suggest a strong desire for the MS CNS to be a leading health care professional to meet the needs of patient, family, and carer.; Conclusion: It can be argued that MS CNSs are best placed to meet the complex, variable needs individuals with MS, their families and carers. Further evidence is required to explore the variability of the disease and the progressive effect and impact of cognitive decline on MS patient, families' and carers' in order to meet their fluctuating and often complex needs. Findings from the review suggest a multifaceted role, and additionally, the needs of patients, families and carers are difficult to define as they vary over time as the disease progresses.
Objective: To evaluate the validity and reliability study of the Supportive Care Needs Survey for partners and caregivers of cancer patients in Turkish society (SCNS-P&C-T).; Methods: This cross-sectional survey followed by a test-retest reliability and psychometric validation study was conducted with 270 participants. The research data were collected using a patient and caregiver demographic survey, the SCNS-P&C-T, the Caregiver Strain Index, and the Hospital Anxiety and Depression Scale.; Results: Ten expert opinions were found to be consistent for content validity of the scale (I-CVI = 0.993, S-CVI = 0.956). The confirmatory factor analysis could not confirm the factor structure of the original scale. Therefore, an exploratory factor analysis was performed and the scale factor structure was determined. These factor structures are (a) psychological and emotional needs, (b) health care and information, (c) work and social needs, (d) communication and family needs.; Conclusion: The SCNS-P&C-T is a valid and reliable tool which can be used to identify unmet needs among caregivers in Turkish populations.
Objectives: This study investigates the relationship of caregiver demographics, caregiving intensity, caregiver support use, and aspects of the caregiving situation to a self-reported measure of unmet need among U.S. informal caregivers of older adults living at home with various conditions.; Methods: Response data from 1,558 caregiver participants interviewed by telephone during the December 2016 baseline period of the Outcome Evaluation of the National Family Caregiver Support Program were used. Caregivers who responded "Definitely No" to the question "Are you receiving all the help you need?" were classified as reporting unmet need. Logistic regression was used to find significant factors associated with unmet need among the full sample and among caregivers tiered by three levels of burden.; Results: Unmet need was reported by 22% of the caregivers. In a fully adjusted model, unmet need was predicted by higher levels of caregiving intensity, non-White race of the caregiver, and the caregiver not feeling appreciated by their care recipient. Other predictors associated with unmet need were no use of caregiver educational services, fewer respite hours, not living in a rural area, and caregiver having an education past high school.; Discussion: Caregivers who do not feel appreciated by their care recipient and non-White caregivers should be identified as potential targets for intervention to address unmet need, especially if they are also reporting higher levels of caregiver burden. Understanding the factors associated with self-reported unmet need can assist caregiver support programs in measuring and addressing the needs of informal caregivers to support their continued caregiving.
Background: Genetic and environmental interactions predispose certain groups to lung cancer, including families. Families or caregiving units experience the disease interdependently. We have previously evaluated the concerns and preferences of patients in addressing the lung cancer experience and cancer risks in their families. This qualitative study evaluates the concerns and preferences of family members and caregivers of patients with lung cancer in the lung cancer experience and familial cancer risks.; Methods: We held focus groups to discuss the format and timing of addressing these preferences and concerns. Qualitative data generated was analyzed using a grounded theory approach.; Results: Five focus groups totaling 19 participants were conducted. Seven themes were identified: (1) journey to lung cancer diagnosis has core dimensions for patient and family, (2) importance of communication between patients, families, and providers, (3) challenges for caregivers and family, (4) mixed perceptions of lung cancer causation among relatives, (5) discussion of cancer risk with relatives has complex dynamics, (6) impact of diagnosis on family health behaviors and screening, (7) role of genetic counseling.; Conclusions: Family members of patients with lung cancer are interested in discussing risk factors, prevention, and diagnoses and also would like access to other supportive services do learn about and cope with some of the stresses and barriers they experience in the family lung cancer journey. The diagnosis represents a potential teachable moment with the opportunity to reduce the risk of LC development or improve early detection in LC patient's family members.
Objectives: Rising costs in oncology care often impact patients and families directly, making communication about costs and financial impacts of treatment crucial. Cost expenditures could offer opportunities for estimation and prediction, affording personalized conversations about financial impact. We sought to explore providers', patients', and caregivers' preferences towards implementing communication about cost, including when, how, and by whom such information might be provided.; Methods: We conducted semi-structured phone interviews with a diverse population including 12 oncology providers, 12 patients, and 8 patient caregivers (N = 32). The constant comparative method was used to identify mutually agreed upon themes.; Results: Participant groups differed in their concerns surrounding cost communication, namely whether they want to receive this information and how such information might impact provider and patient treatment decisions. All participants agreed that oncology providers should not be leading cost conversations. Patients and caregivers identified social workers or financial advisors as most equipped to communicate about cost. Participants emphasized timely cost conversations, ideally around the time of diagnosis. Participants favored various metrics of financial impact beyond overall costs of care including disability, days lost from work, and out-of-pocket expenses.; Conclusion: Cost transparency should be incorporated into usual care; however, there are several challenges to making cost conversations a part of everyday practice. Patients and family members need resources related to cost to aid in decision-making and those delivering cost information should have competency in oncology, financial advisement, and patient-centered care.
Introduction: Families provide frontline caregiving support for people with a diagnosis of schizophrenia. However, research primarily addresses correlates of family functioning from primary family caregivers' perspectives.; Aim: To examine perceived family functioning, particularly its concordance within patient-caregiver dyads, and associated factors in families of people living with schizophrenia.; Methods: A cross-sectional, descriptive correlational design was used. A total of 133 dyads of patients and primary family caregivers from inpatient psychiatric rehabilitation services participated. Descriptive statistics, independent sample t test, one-way ANOVA, Pearson's correlation coefficients, Intraclass correlation coefficient, and stepwise multiple linear regression analyses were applied.; Results: Family functioning was perceived as impaired by patient-caregiver dyads, and there existed a concordance in this regard. Patients' and family caregivers' education levels, patients' suicidality, number of previous hospitalisations, and quality of family-centred care correlated with patients' and primary family caregivers' family functioning.; Discussion: Findings highlight the importance of patient- and family-reported family functioning with implications to address individual and collective concerns.; Implications For Practice: Evidence-based family interventions are crucial for assisting vulnerable families in promoting family functioning. Mental health nurses should facilitate collaboration and open dialogue concerning perspectives of patients and families to improve delivery of comprehensive mental health care.
Introduction: Caregivers play a critical role in detecting and managing psychotic symptoms before young people diagnosed with early psychosis present to care. Little is known about the specific needs of caregivers in navigating pathways to care for their loved one.; Aim: The purpose of this study is to understand the needs of family caregivers and their ways of coping on the pathway to care for early psychosis.; Method: Twenty family caregivers of individuals diagnosed with early psychosis participated in three focus groups that explored caregiving needs provision for early psychosis. Thematic analysis was conducted.; Results: We identified four major themes: education and skill training; raising wider awareness, such as police offers and teachers; adopting technologies for coping; effective coping strategies.; Implications For Practice: These findings provide important insights into caregiving needs and the ways for nurses to address those needs and better equip carers to recognize early symptoms, monitor behavior changes, and navigate care to support people with first episode psychosis. Nursing researchers can use the information to develop on-demand and tailored family-centered intervention in addressing caregivers' needs in education, increasing awareness of early psychosis, and fostering effective coping strategies.
Background: Cancer care is physically and psychologically challenging both for care recipients and caregivers. Caregiving in cancer is an area that needs urgent attention in India. Much of caregiving literature in India is limited to mental illnesses. This study thus examines the perceptions and practices of psychological caregiving among caregivers and care recipients of breast cancer in India.; Methods: Participants were interviewed with the aid of a semi-structured qualitative interview guide. Participants included 39 caregivers and 35 care recipients in different breast cancer stages. Interviews were transcribed, translated to English, coded and themes were derived for further analysis. Informed consent from participants, and ethical clearance and permission from a tertiary hospital was obtained prior to data collection.; Results: Psychological caregiving as perceived by the participants included actions such as encouraging, convincing care recipients, companionship, and maintaining a stress free environment. Caregivers in particular felt that psychological caregiving meant, reacting calmly to sensitive queries of non-family members, providing emotional support to other family members and involvement in religious activities. Taking on such diverse responsibilities gave rise to several unmet psychological needs such as motivation and support in decision-making from other family members.; Conclusion: Irrespective of the status (caregiver or care recipient), participants in this study felt the need for structured counselling services to be incorporated into the standard care protocol. This is an area that needs to be further explored in the context of the breast cancer caregiver and care recipient dyad.
Objectives: The provision of information and referral (I&R) and connection to support services is crucial for individuals with Alzheimer's disease and related dementias (ADRD) and their informal caregivers, especially in rural and remote regions where care and support resources may be limited. The purpose of this study was to develop a deeper understanding of needs for I&R from community stakeholders across a rural and remote state. Methods: A series of town hall meetings were conducted across ten communities in a frontier state. Results: Participants were 175 adults with a mean age of approximately 60 years (SD = 15 years); a majority were non-Hispanic white, female, and self-identified as informal caregivers. Three themes emerged as primary areas of need: (1) to address stigma related to ADRD; (2) to improve the availability of dementia-related I&R; and (3) to efficiently disseminate dementia-related I&R. Conclusions: Findings suggest the importance of a single point of access for I&R with presence in local communities as well as initial and ongoing assessment and provision of appropriate I&R throughout the course of ADRDs. Clinical Implications: Existing community resources and funding support should be leveraged for multiple points and means of access to reliable I&R.
Objective: Describe and synthesise existing published research on the experiences and support needs of informal caregivers of people with multimorbidity. Design: Scoping literature review. Primary database and secondary searches for qualitative and/or quantitative English-language research with an explicit focus on informal carers of people with multimorbidity (no date restrictions). Quality appraisal of included papers. Thematic analysis to identify key themes in the findings of included papers. Results: Thirty-four papers (reporting on 27 studies) were eligible for inclusion, the majority of which were rated good quality, and almost half of which were published from 2015 onwards. The review highlights common difficulties for informal carers of people with multiple chronic illnesses, including practical challenges related to managing multiple health care teams, appointments, medications and side effects, and psychosocial challenges including high levels of psychological symptomatology and reduced social connectedness. Current gaps in the literature include very few studies of interventions which may help support this caregiver group. Conclusion: Interest in this research area is burgeoning. Future work might fruitfully examine the potential benefits of audio-recorded health care consultations, and digitally delivered psychosocial interventions such as online peer support forums, for supporting and enhancing the caring activities and wellbeing of this caregiver group.
Purpose: This study aimed to examine the factors associated with the development of higher burden in informal caregivers of patients with dementia, using dyadic data.; Design and Methods: Seventy-two dyads of patients with dementia and their informal caregivers were assessed, the former in terms of behavioral-psychological symptoms and autonomy, the latter in terms of burden and individual needs.; Findings: Caregivers at risk for developing higher burden are those who are female, whose care recipient present psychiatric symptoms and lower autonomy, and those who recognize the need for more information/support.; Practice Implications: Interventions should offer caregivers the tools to provide care, maintaining their psychological well-being. Interventions should target not only common aspects of caregiver burden but also the specificities of caring for a person with dementia.
Background: People with dementia and their relatives are faced with major challenges due to complex dementia symptoms. Families need information and counselling in order to find adequate dementia care services tailored to their needs. Aim: This case report's objective is to exemplify the domestic situation of a married couple who is faced with significant challenges within the family and the care system due to the husband's dementia and Parkinson's disease. Methods: The Dementia Care Nurse project included case monitoring; by means of different assessments relevant information was recorded and the family's situation described. Results: The family's problems and their need for support were multifaceted and entailed reimbursement of costs, application for care services as well as management of challenging behaviours and reduction of the caregiver's psychosocial burden. Conclusions: The family, particularly the spouse caregiver, was effectively supported in meeting the challenges of dementia, e. g. by drawing on professional services and sorting out entitlement to benefits. From the perspective of the experience in the project, independent counselling structures such as a case management approach are indispenable in order to stabilise the domestic situation.
The sixth update of the Canadian Stroke Best Practice Recommendations for Transitions and Community Participation following Stroke is a comprehensive set of evidence-based guidelines addressing issues faced by people following an acute stroke event. Establishing a coordinated and seamless system of care that supports progress achieved during the initial recovery stages throughout the transition to the community is more essential than ever as the medical complexity of people with stroke is also on the rise. All members of the health-care team engaged with people with stroke, their families, and caregivers are responsible for partnerships and collaborations to ensure successful transitions and return to the community following stroke. These guidelines reinforce the growing and changing body of research evidence available to guide ongoing screening, assessment, and management of individuals following stroke as they move from one phase and stage of care to the next without "falling through the cracks." It also recognizes the growing role of family and informal caregivers in providing significant hours of support that disrupt their own lives and responsibilities and addresses their support and educational needs. According to Statistics Canada, in 2012, eight million Canadians provided care to family members or friends with a long-term health condition, disability, or problems associated with aging. These recommendations incorporate aspects that were previously in the rehabilitation module for the purposes of streamlining, and both modules should be reviewed in order to provide comprehensive care addressing recovery and community reintegration and participation. These recommendations cover topics related to support and education of people with stroke, families, and caregivers during transitions and community reintegration. They include interprofessional planning and communication, return to driving, vocational roles, leisure activities and relationships and sexuality, and transition to long-term care.
The purpose of the present study was to understand the barriers that a particularly vulnerable sub-population of older adults experience in adhering to cancer treatments in rural eastern North Carolina. Qualitative descriptive interviews were completed with 16 individuals (8 cancer patients and their caregivers) about the challenges they face in adhering to cancer treatments. Three themes emerged based on the analysis which included transportation and financial barriers, and assistance that facilitated patients to adhere to treatment protocols. Transportation barriers were those associated with both the formal and informal systems. Financial barriers were related to costs associated with treatment. Participants also reported on ways in which adherence was facilitated via both formal and informal means. Our findings support those of previous research on treatment adherence and add information on the actions patients take in response to barriers that can negatively impact their disease trajectory. The knowledge gained can inform service providers about the issues in treatment adherence and help identify interventions that could support caregivers and patients to circumvent such challenges.
Background: Providing informal care may affects caregivers' life in different ways. Determining the needs of caregivers and supporting them can improve both the quality of life of the caregivers, as well as the elderly they take care of. Objective: To explore the experiences and needs of the informal caregivers in four countries. Design: Qualitative research method was used in the study. Methods: The qualitative data was collected through focus groups and individual interviews between December 2016–May 2017. In all countries interviews were conducted in the mother language of the informants. Informants of the qualitative research were adult people who take primary care of an individual with chronic diseases, aged 65 years or older. Data were collected from 72 informal caregivers from four European countries. Inductive content analysis was performed. Results: Informal caregivers identified 2 themes, 5 subthemes, 19 categories and 7 subtcategories. The themes highlighted two major issues: informal caregiver's challenges and needs related to the management of care of elderly and caregivers' personal needs. Conclusion: The important and charming results of the present study are, difficulties of managing caregiver's own life, and coping with emotions are common in four countries. Identifying challenges and needs of informal caregivers enable healthcare professionals to develop care strategies and plan interventions focused to support and help to reduce the burden of care for elderly with chronic diseases.
The purpose of this study is to determine family caregivers' recommendations for professional health care professionals on how to help prepare them for the death of an elder with dementia. Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Three primary themes emerged: (a) Educate Caregivers, (b) Lead Caregivers, and (c) Provide a Caring and Compassionate Presence. The results highlight the importance of various health care professionals' roles in preparing family caregivers for a death. In doing so, both the dying and their caregivers may have a better end-of-life experience with improved bereavement outcomes.
Purpose Of Review: This mixed-method, rapid review of published research from 2014 to 2019 aims to explore the experiences of pre and postbereaved carers, and the information that they receive in the acute hospital setting. The quality of articles was evaluated using a standardized quality matrix. The techniques of conceptual analysis and idea mapping were used to create a structured synthesis of the findings.; Recent Findings: From the initial search of 432 articles, ten studies met the inclusion criteria for this review. These studies generated data from 42 patients, 1968 family/carers and 139 healthcare staff. Themes that were generated from a synthesis of the included articles were clear and timely communication, workforce provision and environment.; Summary: This review has highlighted the need for improvements in information provision for carers as part of end of life care. Furthermore, the need for specific staff education and training to enable staff to confidently communicate with dying patients and their relatives in the acute setting is also warranted. Understanding and addressing gaps in knowledge and practice are essential to develop strategies in this complex area. Simple strategies can be implemented to improve the care of carers both pre and post bereavement in acute care.
Introduction: There is an increasing reliance on informal caregivers to continue the care of patients after discharge. This is a huge responsibility for caregivers and some may feel unprepared for the role. Without adequate support and understanding regarding their needs, patient care may be impeded. This study aimed to identify the needs valued by caregivers and if there was agreement between acute care nurses and caregivers in the perception of whether caregiver needs were being met. Methods: We conducted face-to-face interviews with 100 pairs of acute care nurses and caregivers. Participants were recruited from inpatient wards through convenience sampling. Questionnaires included demographic data of nurses and caregivers, patients' activities of daily living, and perception of caregiver needs being met in six domains of care. Independent t-test was used to compare mean values in each domain, and intraclass correlation coefficient was used to compare agreement in perception. Results: Caregivers valued reassurance the most. Three domains of care needs showed significant differences in perception of caregiver needs being met:reassurance (p = 0.002), honesty and timeliness (p = 0.008), and kindness and genuine care (p = 0.026). There was poor agreement in all six domains of caregiver needs being met between nurses and caregivers. Conclusion: Although caregivers valued reassurance the most, there was poor agreement between acute care nurses and caregivers in the perception of caregiver needs being met. Hence, more attention should be paid to the caregiver's needs. Further studies can examine reasons for unmet caregiver needs and interventions to improve support for them.
The purpose of this series is to highlight a range of rare health conditions. Rare health conditions are those that affect no more and usually less than 1 person in every 2000 and many HCAs and nurses will encounter some of these conditions, given the high number of them. This 27th article will explore one of these conditions—Mayer-Rokitansky-KüsterHauser syndrome—and the role and support needs of the ‘informal’ family caregiver.
Background: Little is known about the quality of care for people living with Huntington's disease (HD) in the United States. Objective: To document the current HD care experience and identify gaps in care provision in the United States. Methods: Web-based surveys for persons self-identifying as being affected by HD (PAHD, which included individuals with, or at risk for HD) or as caregivers/family members, were developed and refined with targeted input from focus groups comprised of caregivers and family members. The surveys were disseminated via social media and patient advocacy partners from April-May 2017. Results: Total valid responses numbered 797, including 585 caregiver/family respondents and 212 PAHD responses. Respondents reported care provision from HD specialty centers, primary care, movement disorder clinics, and other settings. One in five respondents reported that the person with HD was not currently receiving medical or community care. Respondents generally reported a good level of care, with HD specialists providing the highest rated healthcare experience. Caregiver/family respondents reported helping with a range of activities including budget/finances (60.5%), housekeeping (57.1%) and daily help (53.2%). Most respondents (97.9%) reported searching online, including general information about HD (86.4%), using HD social media channels (61.3%) and looking up clinical trials (59.8%). Respondents emphasized a need for support in financial planning and accessing care, and also for more HD education in the medical community. Conclusions: There is need for more support for HD patients and families. People desire more credible, accessible information. Improving resources available to patients and families should be a goal for HD organizations, along with measurement of patient outcomes.
Accessible summary: There are a large number of adults with learning disabilities who live with and are cared for by their parents.There is a need for interventions to support older carers with their caring role and to plan for a time when they can no longer continue caring.This research looked at a local support service in England that aimed to support carers over 55 who had an adult child with a learning disability living at home.Twelve carers were interviewed individually.The study highlights the unmet needs of older family carers and shows the value of support from a carer perspective.
Background: There are a significant number of adults with a learning disability who live with and are cared for by their parents. There is a pressing need for interventions to support older parent carers with their role and to plan for a time when they can no longer continue caring. This article reports on the experiences of older parent carers who have been in receipt of an intervention to support future planning, in a rural part of England, delivered to older carers of their adult children with learning disabilities. Methods: Semi‐structured carer interviews (n = 12) were conducted and analysed thematically. Results: Four themes were identified (a) emotional needs of carer, (b) future planning, (c) accessing other services and resources and (d) links to adult care services. Carers welcomed the flexibility of the intervention and its focus on support for them, relieving their sense of isolation. Conclusions: The research highlights the unmet needs of older family carers and shows the value of tailored support from a carer perspective. The findings have implications for national social care provision delivered to carers of adult children with learning disabilities in rural areas.
Background and objective: Assistive technologies might be a suitable option for supporting people with dementia and their informal caregivers. To avoid "one-fits-all"-solutions and to design useful technologies, it is essential to consider the end-users' needs. The objective of this review was to examine the needs of people with dementia and their informal caregivers with regard to assistive technologies. Methods: We conducted a scoping review based on a comprehensive literature search in databases, handsearching, and free web searching. Additionally, we performed citation tracking of included studies. We included all types of study designs. Two researchers independently selected the studies. The results were thematically categorised by two researchers. Results: The search yielded 7160 references. 18 of 24 included studies were qualitative. The studies had been conducted in 13 different countries, mostly in Europe. The sample size ranged between two and 270 participants. Most of the studies involved people with dementia as well as informal caregivers. The analysis resulted in eleven themes. The themes could be assigned to three domains: "needed technologies", "characteristics of needed technologies", and "information about technologies". Conclusions: The results might guide future usage, development and research addressing end users' needs with regard to assistive technologies.
Background: Hematopoietic stem cell transplantation (HCT), also referred to as blood and marrow transplantation (BMT), is a high-risk, but potentially curative therapy for a number of cancer and noncancer conditions. BMT Roadmap (Roadmap 1.0) is a mobile health app that was developed as a family caregiver-facing tool to provide informational needs about the health status of patients undergoing inpatient HCT.; Objective: This study explored the views and perceptions of family caregivers of patients undergoing HCT and their input regarding further technology development and expansion of BMT Roadmap into the outpatient setting (referred to as Roadmap 2.0).; Methods: Semistructured qualitative interviews were conducted among 24 family caregivers. Questions were developed from existing literature coupled with prior in-depth observations and interviews in hospital-based settings to explore the study objectives. Participants were recruited during routine outpatient clinic appointments of HCT patients, and all interviews were conducted in the participants' homes, the setting in which Roadmap 2.0 is intended for use. A thematic analysis was performed using a consistent set of codes derived from our prior research. New emerging codes were also included, and the coding structure was refined with iterative cycles of coding and data collection.; Results: Four major themes emerged through our qualitative analysis: (1) stress related to balancing caregiving duties; (2) learning and adapting to new routines (resilience); (3) balancing one's own needs with the patient's needs (insight); and (4) benefits of caregiving. When caregivers were further probed about their views on engagement with positive activity interventions (ie, pleasant activities that promote positive emotions and well-being such as expressing gratitude or engaging in activities that promote positive thoughts, emotions, and behaviors), they preferred a "menu" of positive activities to help support caregiver health and well-being.; Conclusions: This study involved family caregivers as participants in the development of new components for Roadmap 2.0. Our research provided a further understanding of the many priorities that hematopoietic stem cell transplant family caregivers face while maintaining balance in their lives. Their schedules can often be unpredictable, even more so once the patient is discharged from the hospital. Our findings suggest that expanding Roadmap 2.0 into the outpatient setting may provide critical caregiver support and that HCT caregivers are interested in and willing to engage in positive activities that may enhance well-being and attenuate the stress associated with caregiving.; International Registered Report Identifier (irrid): RR2-10.2196/resprot.4918
Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent. Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers' preferences for how to ideally engage in the process with patients, family and professionals. Design: A qualitative study was conducted: we analysed semi-structured interviews (n = 15) through the method of constant comparative analysis. Setting/participants: We included Flemish family caregivers of persons with young-onset dementia. Results: Plans for the future typically concerned non-medical affairs. Participants' limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients' cognitive competence. However, endorsement for advance care planning showed from respondents' preferences that it should be initiated timely, by a third party, and emphasize patients' remaining capacities. Finally, the need for information and high-quality care emerged. Conclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.
It is well established in research, practice, and policy that unpaid caregivers (family and friends of people with care needs) experience stress in their role. Supports that have been put in place by policy planners and program developers to support caregivers may not be accessed by caregivers at all or may do little to reduce their stress. Accessing personal resources (education, finances), in addition to social resources (individual connections) and societal resources (community supports) are critical in fostering resilience in caregivers (helping them adapt to stress and adversity). Social capital theorists argue that creating connections at various levels can improve access to resources. This research, through qualitative interviews (n = 21), identifies the different levels of resources required to address the needs of caregivers. Our findings indicate that interventions that focus on access to personal-level resources (education, funding) are important, but are on their own insufficient. Of more importance were interventions that work to improve relationships between formal providers and families; access to interdisciplinary teams; cross-sectoral collaborations; and inter-organization relationships, highlighting that a system that works together is likely to improve caregivers' access to resources.
Family caregiver engagement in clinical encounters can promote relationship-centered care and optimize outcomes for people with Alzheimer's disease and related dementias (ADRD). Little is known, however, about effective ways for health care providers to engage family caregivers in clinical appointments to provide the highest quality care. We describe what caregivers of people with ADRD and people with mild cognitive impairment (MCI) consider potential best practices for engaging caregivers as partners in clinical appointments. Seven online focus groups were convened. Three groups included spousal caregivers (n = 42), three included non-spousal caregivers (n = 36), and one included people with MCI (n = 15). Seven potential best practices were identified, including the following: "acknowledge caregivers' role and assess unmet needs and capacity to care" and "communicate directly with person with ADRD yet provide opportunities for caregivers to have separate interactions with providers." Participants outlined concrete steps for providers and health care systems to improve care delivery quality for people with ADRD.
This paper presents the results of a qualitative study aimed at exploring the experiences and needs of informal caregivers of persons with dementia and identifying caregiver expectations for support. The research was based on phenomenological and social constructionist approaches; it also took experience-centred and culturally oriented approaches to narratives. It was conducted in Estonia in 2017 by means of unstructured in-depth interviews with 16 informal caregivers who had relatives with dementia. The narrative approach used in this study proved to be an appropriate and valuable method to understand the situations of the caregivers of the people with dementia, in identifying their needs and expectations, and in developing social understanding for caregivers. The results are divided under four thematic headings: awareness of dementia; process of caregiving and different caregiving roles; influence of caregiving on personal life; and expectations of empowerment. We found that it is necessary to raise public awareness of dementia and develop person-centred support services for the people living with dementia.
Objective: The road to legalization of Medical Assistance in Dying (MAID) across Canada has largely focused on legislative details such as eligibility and establishment of regulatory clinical practice standards. Details on how to implement high-quality, person-centered MAID programs at the institutional level are lacking. This study seeks to understand what improvement opportunities exist in the delivery of the MAID process from the family caregiver perspective.; Method: This multi-methods study design used structured surveys, focus groups, and unstructured e-mail/phone conversations to gather experiential feedback from family caregivers of patients who underwent MAID between July 2016 and June 2017 at a large academic hospital in Toronto, Canada. Data were combined and a qualitative, descriptive approach used to derive themes within family perspectives.; Result: Improvement themes identified through the narrative data (48% response rate) were grouped in two categories: operational and experiential aspects of MAID. Operational themes included: process clarity, scheduling challenges and the 10-day period of reflection. Experiential themes included clinician objection/judgment, patient and family privacy, and bereavement resources.; Significance Of Results: To our knowledge, this is the first time that family caregivers' perspectives on the quality of the MAID process have been explored. Although practice standards have been made available to ensure all legislated components of the MAID process are completed, detailed guidance for how to best implement patient and family centered MAID programs at the institutional level remain limited. This study provides guidance for ways in which we can enhance the quality of MAID from the perspective of family caregivers.
Aim: To examine the needs, barriers and challenges experienced by family carers of people with dementia concerning the management of their care recipients' functional disabilities, and their experiences and opinions of using mobile health (mHealth) applications in health information seeking.; Background: Functional disability is a significant problem among people with dementia and management can be challenging for family carers. Evidence suggests that mHealth applications can support knowledge needs of patients and families.; Design: A qualitative descriptive exploratory study.; Methodology: In-depth interviews were conducted with a purposive sample of family carers using a semi-structured interview guide. An inductive thematic analysis method was used. The COREQ reporting guideline was followed.; Results: Five spousal and five child carers participated in this study. Four key themes were identified: (a) Challenges faced that contribute to psychological distress and burden; (b) Essential role of support systems in dementia care; (c) Information and educational needs of family carers, and (d) Experiences and attitudes of mHealth applications as an educational and supportive resource.; Conclusion: Providing functional care is demanding, challenging and stressful, and leads to carer burden. The complexity of dementia is a barrier in the organisation of functional care and access to a support network is vital to care provision. The information needs of family carers can potentially be addressed through an mHealth application.; Relevance To Clinical Practice: This study provides important information on family carers' needs, and the barriers and challenges related to functional care for people with dementia. Findings from this study can assist nurses and other health professionals in the planning of educational and supportive programs for family carers. Furthermore, the use of mHealth applications could positively contribute to the delivery of these programs.
Purpose/Objectives: Family caregivers of individuals living with cancer are often highly involved in communication with healthcare teams, yet little is known about their experiences, needs, and preferences in this role. To address this gap in the knowledge base, researchers sought to explore family caregivers' perspectives on communication with oncology care providers. Design and Methods: Researchers conducted a secondary inductive thematic analysis of qualitative interviews originally collected as part of a randomized clinical trial of a supportive intervention for family caregivers of patients with cancer (N = 63). Participants: Participants were family caregivers of adult patients with cancer. Most were patients' spouses/long-term partners (52.3%) or adult children/grandchildren (29.2%). Caregivers of patients with all cancer types and stages of disease progression were eligible for study enrollment. Findings: Caregivers valued communication with healthcare providers who were attentive, genuine, broadly focused on patients and caregivers' experiences, sensitive to unmet information needs, and responsive to the potentially different communication preferences of patients and caregivers. Interpretation: Family caregivers expressed a strong preference for person-centered communication, conceptualized as communication that helps healthcare providers meet the needs of patients and caregivers both as individuals and as an interdependent unit of care, and that acknowledges individuals' experiences beyond their prescribed roles of "cancer patient" and "caregiver." Implications for Psychosocial Oncology Practice: Psychosocial oncology providers' strong orientation to the biopsychosocial and spiritual aspects of cancer care delivery make them uniquely positioned to support family caregivers. Findings suggest that providers should explicitly communicate their commitment to both patient and family care, involve family caregivers in psychosocial assessment activities and subsequent intervention, and strive to honor patients and caregivers' potentially different communication preferences.
Objectives: To explore the experiences of caregivers living with relatives affected by Crohn's disease (CD) in a context in which the family provides social support.; Design: A qualitative study based on a phenomenological approach was conducted through in-depth interviews.; Setting: Participants living in Alicante (Spain) were recruited Participants: Eleven family caregivers of people with CD were interviewed.; Methods: The in-depth interviews took place in the participants' homes and were audio recorded and then transcribed for a qualitative thematic analysis.; Results: Five themes and accompanying subthemes were identified: (1) adaptation to the caring experience, (2) dichotomy 'with or without me', (3) unending burden, (4) need for knowledge and control of the disease, and (5) getting used to CD and normalising life.; Conclusion: The findings contribute to an increase in the knowledge and comprehension of the experience of being the caregiver of a relative with CD, which could be useful for professionals towards improving the quality of the CD caring process. Due to the temporal dimension of CD with frequent bouts of exacerbation and remission, family caregivers must adapt and acquire skills during chronic illness evolution. Moreover, the lack of family caregivers' inclusion and follow-up within the Spanish health system makes them feel invisible and useless, which may contribute to caregivers' burdens.
Objectives: To provide a comprehensive synthesis of informal caregivers' experiences of caring for a significant other following discharge from cardiac surgery.; Design: Systematic integrated review without meta-analysis.; Data Sources: A bibliographic search for publications indexed in six databases (Cochrane Library, CINAHL, MEDLINE, EMBASE, AMED and PsycINFO), including a scan of grey literature sources (GreyNet International, Google Scholar, Web of Science, WorldCat and the Clinical Trials Registry) was conducted in October 2018.; Eligibility Criteria For Selecting Studies: Studies were included if they described views and perspectives of informal caregivers of cardiac surgery patients (non-intervention studies (qualitative and quantitative)), and the effectiveness of interventions to evaluate support programme for informal caregivers of cardiac surgery patients (intervention studies).; Results: Of the 4912 articles identified in searches, 42 primary research studies were included in a narrative synthesis with 5292 participants, including 3231 (62%) caregivers of whom 2557 (79%) were women. The median sample size across studies was 96 (range 6-734). Three major themes emerged from the qualitative study data: (1) caregiver information needs; (2) caregiver work challenges and (3) caregivers adaption to recovery. Across the observational studies (n=22), similar themes were found. The trend across seven intervention studies focused on caregiver information needs related to patient disease management and symptom monitoring, and support for caregivers to reduce symptoms of emotional distress.; Conclusion: Informal caregivers want to assist in the care of their significant others after hospital discharge postcardiac surgery. However, caregivers feel insecure and overwhelmed and they lack clear/concise discharge information and follow-up support during the early at-home recovery period. The burden of caregiving has been recognised and reported since the early 1990s, but there remains a limited number of studies that assesses the effectiveness of caregiver interventions.; Prospero Registration Number: CRD42018096590.
Introduction: Family caregiver-provider communication is essential to making an effective hospice care transition for patients. Despite the importance of this topic, there is little information about how caregivers in rural US-Mexico border regions navigate hospice care transition and their needs. This study explores the family caregivers' experience relating to their end-of-life (EOL) communication and needs for hospice care transition.; Methods: In-depth interviews using qualitative methods were conducted with 28 informal caregivers of patients who are enrolled in home hospice care in a rural US-Mexico border region. Thematic analysis was applied to analyze the data.; Results: Qualitative themes that emerged include (1) lack of/insufficient EOL communication and (2) informational needs, including (a) signs of symptom changes, (b) EOL treatment options and goals of care, and (c) hospice care and its benefits. Limited caregiver-provider EOL communication was observed, in which the majority of the caregivers (n = 22, 78.6%) were informed of the patient's terminal condition, but only half (n = 15, 53.6%) had a discussion with the providers about hospice care.; Conclusion: Timely EOL communication between caregivers and the providers is key to the patient's optimal transition to hospice care. Providers need to be aware of the caregivers' informational needs relating to patient symptoms and health condition as well as hospice care. It is important to be aware of the impact of cultural values on hospice care placement. A clear explanation about the purpose and functions of hospice care and its benefit can better guide the family caregivers in making hospice care decisions.
Aims and Method: To review the literature on the emotional and mental health needs of young carers of parents with mental illness and the extent to which such needs are recognised and supported by professionals. Three databases were systematically searched from 2008 to 2018, and five studies met the inclusion criteria.; Results: The key findings were that young caregivers had a significantly higher dose-response mortality risk than their peers; were at increased risk of mental health difficulties, especially where the ill family member was a parent and had mental illness or misused substances; were overlooked by professionals owing to a lack of awareness; but could derive benefits from their caring role when appropriately supported.; Clinical Implications: Young carers are at increased risk regarding emotional and mental health needs; this risk could be mitigated by professionals recognising the young carer's role and including them in their parent's treatment plan.
Background: Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals. Methods: Relatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate). Results: The majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support. Conclusions: This research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative's priorities for EoLC in acute hospitals and can advance care providers', policy makers' and educationalists' priorities for service improvement.
The purpose of this study is to explore the needs of family members at the bedside of stroke patients (n = 12) admitted to an inpatient rehabilitation facility (IRF). Family members' needs were determined through semistructured interviews, "Draw a Bridge" art therapy technique, and the Family Inventory of Needs. Family members described a family-centered approach to care that addressed the following needs: assistance with preparing for discharge, staff caring for family members, communication about the plan of care and what to expect postdischarge, and trusting the care provided by IRF staff. Art therapy revealed that stroke was a crisis with many unmet needs for the interviewer to explore. Descriptive statistical analysis of the Family Inventory of Needs revealed that both met and unmet needs were consistent with the interviews and the interpretations of the drawings. These findings inform the need for interventions during IRF to enhance communication, support, and effective caregiver education amidst the crisis of stroke.
There are currently very few studies exploring the area of mental health in the Philippines. The topic on mental illness remains widely stigmatized that even the concerns of the caregivers of the mentally ill stay unexplored on the background. This qualitative study aims to help families, mental health professionals, and the general community, understand the different coping and support needs of caregivers of the mentally ill. The researchers employed a phenomenological method of identifying the coping and support needs of these caregivers whose mentally ill family members were admitted in a Mental Health Facility in Leyte, Philippines. Data collection was made through in-depth interviews with carers/caregivers/relatives of five (5) mentally ill persons. Library and internet desk research in its related literature were also employed. Results of the study revealed two major themes, namely 1) coping strategies of caregivers of the mentally ill, and, 2) support to caregivers of the mentally ill. In the theme of coping strategies of caregivers of the mentally ill, three sub-themes emerged, namely 1.1) religious practice, 1.2) being productive, preoccupied and proactive, and 1.3) acceptance and resolve. Several support programs and services such as provision of mental health education and counseling regarding facts about the illness, its treatment and management, and leniency on watcher requirements during hospital admission are among the recommended support needs identified by the caregivers of the mentally ill.
Purpose: To identify the most pressing needs for community resources to support physical activity participation, determinants of perceived need, and barriers to co-participation in physical activity among people with multiple sclerosis (MS) who have moderate-to-severe disability and the family caregivers providing assistance to such individuals. Methods: Seventy-eight people with MS and 46 family caregivers participated in this cross-sectional survey study, guided by the Concerns Report Methodology. Results: The results show differences between groups in rankings for some need items. However, three need items were prioritized by both people with MS and the family caregivers: (1) information about available resources to support physical activity participation, with Need Indexes of 76.6% and 52.3%, respectively; (2) programs that support joint participation of people with MS together with their caregivers in physical activity, with Need Indexes of 62.0% and 68.9%, respectively; and (3) programs that have affordable total cost of participation, with Need Indexes of 50.7% and 52.3%, respectively. A broad range of factors (i.e., education, living situation, type of community, marital status, employment, and income, as well as comorbidity status) was significantly associated with one or more of these need items. Several modifiable impairment-related, personal and logistical factors were identified by both groups as barriers to co-participation in physical activity. Conclusions: The findings highlight the complexity of developing community resources that target physical activity promotion in MS dyads. Importantly, our findings suggest that resources designed to influence dyadic physical activity participation need to include content that are responsive and tailored to both the needs of the person with MS and the unique needs of the family caregiver. The results also underscore the importance of reinforcing physical activity as a shared behavior and providing information about affordable options for exercising together to the benefit of each individual and the dyad (i.e., partnership). Overall, our findings provide a possible starting point to guide the identification of potential participants that might benefit the most from future intervention development work. MS has life-altering consequences for people with the disease and the family caregivers who support such individuals. Rehabilitation professionals need to reinforce physical activity as a shared behavior and provide information about affordable options for exercising together to the benefit of each individual and the dyad. A "one-size-fits-all" approach is not appropriate, therefore, clinicians need to identify flexible and pragmatic strategies to increase dyadic participation in the presence of unique caregiver and care-recipients barriers that might impede such an increase.
The purpose of this study is to explore variations in family support for Latino dementia caregivers and describe the role of the family in dementia caregiver stress processes. Content analysis is utilized with themes derived inductively from 16 in-depth interviews with Latino caregivers recruited in California from 2002 to 2004. Three types of family support are described: extensive (instrumental and emotional support from family, n = 3), limited (instrumental support from one family member, n = 7), and lacking (no support from family, n = 6). Most caregivers report limited support, high risk for burnout and distress, and that dementia-related neuropsychiatric symptoms are obstacles to family unity. Caregivers with extensive support report a larger family size, adaptable family members, help outside of the family, and formalized processes for spreading caregiving duties across multiple persons. Culturally competent interventions should take into consideration diversity in Latino dementia care by (a) providing psychoeducation on problem solving and communication skills to multiple family members, particularly with respect to the nature of dementia and neuropsychiatric symptoms, and by (b) assisting caregivers in managing family tensions - including, when appropriate, employing tactics to mobilize family support.
Objective: To describe the type of care provided by a nationally-representative sample of informal caregivers, the frequency of unmet supportive care needs, and examine characteristics associated with unmet needs.; Methods: Using data from the Health Information National Trends Survey, we identified caregivers of an adult care recipient. Descriptive statistics examined support provided by caregivers for activities of daily living (ADLs) and instrumental activities of daily living (IADLs) and caregiver perceptions of their needs in five areas: medical/nursing tasks, accessing services, respite care, support groups, and counseling for caregivers. Bivariate statistics examined sociodemographic and caregiver characteristics associated with each need.; Results: Among 316 caregivers, 30.9% reported at least one unmet supportive care need. Caregivers most often provided support for 0-2 ADLs and 5-7 IADLs. Younger age and longer duration of time caregiving were associated with unmet supportive care needs for medical/nursing training (p = 0.02 and 0.04, respectively). Caregivers providing assistance with more ADLs reported needs for respite care support (p=0.03).; Conclusion: Subgroups of caregivers that may be most vulnerable with greater unmet supportive care needs are those that are younger, have provided care for longer, and those assisting with more ADLs. Future research should explore these factors to inform intervention development.
PURPOSE: To investigate the needs of caregivers for individuals with cancer and to gain insight into how to provide support for caregivers. PARTICIPANTS & SETTING: 47 caregivers for patients with cancer in an outpatient setting in Denmark. METHODOLOGIC APPROACH: This qualitative study used focus group interviews. Data were analyzed using a hermeneutics framework and Malterud's systematic text condensation. FINDINGS: Results of the nine focus groups showed the experiences of caregiving. Theme 1 was interdependence, which consisted of the subthemes responsibility, a moral obligation and loneliness and talking. The results also revealed a second theme, different needs for support, which contained three subthemes: support through personal time, support through peers, and support through talking to healthcare professionals. IMPLICATIONS FOR NURSING: Caregivers for individuals with cancer do not distinguish their own needs and perspectives of support from those of the patients. Caregivers' need for support includes having support from peers, talking to healthcare professionals, and having personal time. Support of caregivers should allow for focusing on the family as a unit instead of solely addressing the patient.
Background: There are an estimated 46.8 million people worldwide living with dementia in 2015, being cared for usually by family members or friends (informal caregivers). The challenges faced by informal caregivers often lead to increased levels of stress, burden and risk of care-recipient institutionalisation. Aim: The overarching aim of this study was to explore the experiences and perceptions of informal caregivers of people with dementia when interacting with the health care system, and whether the support received acted as a mediator of caregiver stress. The secondary aim was to investigate healthcare professionals' views and current practice regarding people with dementia and their interactions with informal caregivers. Method: We employed a qualitative research design, using focus groups and one face-to-face interview with a purposive sample of informal caregivers and healthcare professionals in Lincolnshire, UK. Data were collected between March and July 2015. We used the stress-process model of stress in caregivers as a theoretical framework. Results: We interviewed 18 caregivers and 17 healthcare professionals. Five themes, mapped to the stress-process in caregivers' model, captured the main challenges faced by caregivers and the type of support they wanted from health care services. Primary stressors included the challenge of diagnosing dementia; caregivers' needs and expectations of an in-depth knowledge and understanding of dementia from healthcare professionals; and need for carer education. Secondary role strain included lack of support and mismatch of communication and expectations. Caregiver involvement in monitoring care and disease was a potential mediator tool. Conclusions: Fragmentation of dementia care services, lack of training for healthcare professionals and the dearth of information for caregivers means health care services are only partially fulfilling a support role. In turn, lack of support may be intensifying caregiver stress leading to worsening in their health and well-being; thus, potentially increasing the risk of institutionalisation of their care-recipient.
Purpose/background: Accumulating evidence shows that bereaved family caregivers report elevated distress for an extended period, which compromises their quality of life. A first step in the development of programs to enhance bereaved caregivers' quality of life should be determining the needs they experience to manage the loss, and the needs that are not being satisfied. Thus, this study aimed to develop a new measure to assess unmet needs among bereaved family caregivers.; Method: The 20-item Needs Assessment of Family Caregivers-Bereaved to Cancer measure was developed and validated with bereaved cancer caregivers 5 (n = 159) and 8 (n = 194) years after the initial cancer diagnosis of the index patient, when stress in providing care to the patient was assessed.; Results: Exploratory factor analysis yielded two primary factors: unmet needs for reintegration and unmet needs for managing the loss. Bereaved caregivers who were younger and ethnic minority, and who had greater earlier perceived stress of caregiving, reported their needs were more poorly met (t > 2.33, p < .05). The extent to which bereaved caregivers' needs to manage the loss were not perceived as being met was a consistent and strong predictor of poor adjustment to bereavement at both 5- and 8-year marks (t > 1.96, p < .05), beyond the effects of a host of demographic and earlier caregiving characteristics.; Conclusion: Findings support the validity of the Needs Assessment of Family Caregivers-Bereaved to Cancer and suggest that interventions to help bereaved caregivers manage the loss by assisting their transition to re-engagement in daily and social activities will benefit caregivers by mitigating bereavement-related distress years after the loss.
Introduction The presence in the home of a dependent family member is a problematic situation for the whole family. By implementing training programs it is possible to achieve health gains and improve care management, as well as increase the capacity to seek information and take responsibility. Objectives To synthesize the effects of training programs of the informal caregiver in a home context in their quality of life. Methods Integrative review of the literature carried out during the month of March 2019, in the databases: Scielo, Mediclatina, Scopus, Cinahl and Medline, through the PICO methodology, whose guiding question was: “What are the effects caused on the quality of life by... [The remainder of the abstract is not freely accessible]
In Palliative Care, the unit of care is the patient and their family. Although members of the health care team often address the family caregiver's opinions and concerns, the focus of care remains on the needs of the patient. The readiness and willingness of the family caregiver is often overlooked as they are expected to assume a complex caregiving role. When family caregivers are not intellectually or emotionally prepared or physically capable, the caregiver is at high risk for serious health issues and cognitive, emotional, and physical decline particularly as caregiving extends over time. Family caregivers are often a neglected and at-risk population. Illustrated through the use of a case study, this article addresses the complex role of family caregivers, as both health team members and second-order patients. It emphasizes the importance of family assessment and interventions to balance the burdens and benefits of family caregiving and protect caregivers' health and well-being.
Purpose: To collect information about the needs of families affected by childhood-onset dystrophinopathies residing in the United States. Methods: Individuals with an eligible dystrophinopathy were identified by the Muscular Dystrophy Surveillance, Tracking, and Research network. Between September 2008 and December 2012, 272 caregivers completed a 48-item survey about needs related to information, healthcare services, psychosocial issues, finances, caregiver demographics, and the individual’s functioning. Results: Overall, at least 80% of the survey items were identified as needs for more than one-half of caregivers. Among the needs identified, physical health and access to information were currently managed for most caregivers. Items identified as needed but managed less consistently were funding for needs not covered by insurance and psychosocial support. Conclusions: Healthcare providers, public health practitioners, and policymakers should be aware of the many needs reported by caregivers, and focus on addressing gaps in provision of needed financial and psychosocial services.
Background A long-term illness is stressful both for the person with the diagnosis and for his or her informal caregivers. Many people willingly assume the caregiving role, so it is important to understand why they stay in this role and how their motivation affects their health. Self-determination theory (SDT) is a theory of human motivation that has been successfully applied in human research domains. To our knowledge, there is no literature review on the application of SDT in a caregiver context. A systematic review of the literature could improve the understanding of motivation in caregiver work and contribute to the utility of SDT. Aim To describe and explore empirical studies of caregivers' motivation from the perspective of self-determination theory. Methods An integrative literature review according to Whittemore and Knafl was conducted with systematic repetitive searches in the MEDLINE, Scopus, PsychInfo, PsycNET, Chinal, Cochrane Library and EMBASE databases. The searches were performed from May through December 2018. The PRISMA diagram was used for study selection, and papers were assessed for quality based on the Mixed Methods Appraisal Tool. Data analysis consisted of a four-stage narrative analysis method. Result Of 159 articles, 10 were eligible for inclusion. All studies considered satisfaction of the three basic psychological needs for competence, autonomy and relatedness as essential in predicting the quality of caregivers' motivation and thereby their well-being. In this review, autonomous motivation was the most important determinant of caregivers' well-being. Conclusions Findings showed that SDT can be applied to identify, categorise, explain, predict, promote and support motivation among caregivers. This lends interesting support for SDT and promotes further study and application of the theory as a psychological approach to caregivers' health and health promotion.
The number of older people with care or support needs is on the rise across the UNECE region. While there are efforts to expand formal long-term care services to respond to this growing demand, informal care forms the backbone of long-term care (LTC) provision across the UNECE region. There is diversity in the way long-term care provision is organised and financed across the region as well as with regard to the status, recognition and support provided to informal carers. Although informal carers cover an estimated 70 to 95 per cent of all care needs, they are often called the ‘invisible workforce’ in long-term care systems as they are rarely registered or counted and their status as informal care provider is often not formally recognized. The majority of informal care is provided by women.
By covering for the gaps in both short-term and long-term formal care provision, thus “co-producing” care services alongside professional service providers, informal carers help prevent or delay the need for institutionalization of people in need of care or support and are enabling them to remain living at home.
It is challenging for informal carers to cover short-term care needs for a family member, neighbour or friend. It becomes even more demanding the longer this activity has to be performed, especially when informal carers might themselves be of advanced age and care recipients themselves. Policy measures are needed to address the growing need for care in a way that prevents strain on families and caregivers and protects their health and well-being. Public policies need to ensure that informal carers will not be forced to reduce or give up paid employment, face social exclusion and ultimately be caught in a poverty trap.
This policy brief focuses on informal carers who provide long-term informal care to older persons. It addresses the policy challenge to support informal carers in a multifaceted way, identifying key challenges faced by informal carers and policy strategies to address them.
The report finds that 65% of UK adults can expect to care unpaid for a loved one in their lifetime. The findings released in this report add crucial new data. Past studies have often relied on ‘snapshot’ data (which capture a moment in time), or research that shows what caring means for individuals but that is not representative of the whole population. Our new findings are from the highest quality UK surveys, based on data collected over decades from large representative samples of people regularly asked about caring and other aspects of their lives. We hope this new analysis will also contribute to achieving progress for carers, who, across the UK, urgently need better services and more support to manage work and care.
Aims and objectives To explore the experiences of the families of young adults with intellectual disabilities at the point of transition from child to adult health services. Background The population of people with intellectual disabilities is changing rapidly, with young people with increasingly complex needs surviving into adulthood and requiring transition from child to adult health services. Design An interpretative qualitative design. Methods Semi-structured interviews were held with ten family carers of young adults with intellectual disabilities and complex care needs, who were in the process of or had recently completed a transition from child to adult health services in Scotland. Data were analysed using thematic analysis. The COREQ checklist was used. Results Transition emerged as a highly emotional and challenging period for family carers. Their experiences were captured in five main themes: “a deep sense of loss,” “an overwhelming process,” “parents making transitions happen,” “a shock to the adult healthcare system” and “the unbearable pressure.” Nurses were often seen as instrumental to counteracting some of these challenges. Conclusions There is an urgent need to respond to the challenges experienced by carers at the point of transition and beyond, by ensuring early and coordinated planning, effective information sharing and communication and clear transition processes and guidelines. A person-centred and family-centred approach is required to minimise negative impact on the health and well-being of the young adult with intellectual disabilities and their carers. Relevance to clinical practice Registered nurses have a key role in providing information and support, along with coordinating care at the time of transition from child to adult health services for young adults with complex intellectual disabilities. It is vital that their input is person-centred and responds effectively to the expert knowledge of family carers, while at the same time ensuring their needs for information and support are also addressed.
Background: A user-centered design approach for eHealth interventions improves their effectiveness in stroke rehabilitation. Nevertheless, insight into requirements of end-users (patients/informal caregivers and/or health professionals) for eRehabilitation is lacking. The aim of this study was to identify end-user requirements for a comprehensive eHealth program in stroke rehabilitation. Methods: Eight focus groups were conducted to identify user requirements; six with patients/informal caregivers and two with health professionals involved in stroke rehabilitation (rehabilitation physicians, physiotherapists, occupational therapists, psychologists, team coordinators, speech therapist). The focus groups were audiotaped and transcribed in full. Direct content analysis was used to identify the end-user requirements for stroke eHealth interventions concerning three categories: accessibility, usability and content. Results: In total, 45 requirements for the accessibility, usability and content of a stroke eRehabilitation program emerged from the focus groups. Most requirements concerned content (27 requirements), followed by usability (12 requirements) and accessibility (6 requirements). Patients/informal caregivers and health professionals each identified 37 requirements, respectively, with 29 of them overlapping. Conclusions: Requirements between stroke patients/informal caregivers and health professionals differed on several aspects. Therefore, involving the perspectives of all end users in the design process of stroke eRehabilitation programs is needed to achieve a user-centered design. Trial registration: The study was approved by the Medical Ethical Review Board of the Leiden University Medical Center [P15.281].
Background: Heart failure (HF) management requires the participation of patients, their significant others, and clinical providers. Each group may face barriers to HF management that may be unique or may overlap. Objective: The aim of this study was to compare the barriers and facilitators of HF management as perceived by patients, significant others, and clinical providers. Methods: Participants were recruited from a Veterans Health Administration facility. Eligible patients had a diagnosis of HF (ICD9 code 428.XX), 1 or more HF-related visit in the previous year, and a significant other who was their primary caregiver. Significant others were adults with no history of cognitive impairments caring for patients with HF. Providers were eligible if they cared for patients with HF. All participants completed semistructured interviews designed to elicit barriers to managing HF and strategies that they used to overcome these barriers. Interviews were transcribed and analyzed using latent thematic analysis, and recruitment continued until thematic saturation was attained. Results: A total of 17 couples and 12 providers were recruited. All 3 groups identified poor communication as a key barrier to HF management, including communication between patients and their significant other, between couples and providers, and providers with each other. Significant others noted that the lack of direct communication with clinical providers hindered their efforts to care for the patient. All 3 groups emphasized the importance of family members in optimizing adherence to HF self-management recommendations. Conclusions: Providers, patients, and significant others all play important and distinct roles in the management of HF. Tools to enhance communication and collaboration for all 3 and supporting the needs of significant others are missing components of current HF care.
Objectives Informal caregivers of patients with chronic obstructive pulmonary disease (COPD) experience a heavy caregiver burden, but few studies have explored what support they need. The aim of this study was to describe perceptions of healthcare support to informal caregivers, both from the family caregiver's and the staff's perspective. Design A qualitative interview study involving semi-structured interviews and analysed with content analysis. Participants In total, 54 participated: 36 informal caregivers of patients with severe (stage 3-4) COPD and 17 healthcare staff. Results Two main themes emerged from the analysis: (1) Ambiguity impedes provision of support. Both caregivers and staff experienced ambiguity. The informal caregivers needed emotional, practical and informational support but talked about unclear expectations, while the staff described an uncertainty about their duties regarding the families. There were no routines to unburden the families. Moreover, language and cultural barriers hampered their efforts. (2) Knowledgeable and perceptive communication is key to support. Both caregivers and staff described positive experiences of dialogue. The dialogue may facilitate means to caregiver support and was a support in itself. Conclusions Our findings suggest that strategies and routines for caregiver support, including communication skills among the staff, should be developed, to move toward the family perspective advocated in palliative- and nursing family care.
Objective This study explored the association between healthcare needs and quality of life (QoL) of Korean cancer family caregivers according to the time lapse after cancer diagnosis. Methods Self‐administered comprehensive needs assessment tool and EuroQol‐5‐dimension index for 686 cancer family caregivers were classified into four groups according to time lapse after cancer diagnosis (≤12, 13–36, 37–60,>60 months). We estimated the association between unmet needs and QoL by multiple linear regression analyses after adjusting for age, sex, cancer site and caregivers’ comorbid conditions. Results Female or elder caregivers had lower QoL and higher unmet needs. The highest unmet needs existed in healthcare staff domain followed by information/education domain persistently along all periods. QoL of caregivers was significantly associated with family/social support and health/psychological problem during the time lapse of ≤12 months as well as >60 months. Practical support was consistently associated with QoL across all time lapses. Religious/spiritual support and hospital facilities and services showed significant association with QoL only in ≤12 months and >60 months respectively. Conclusions The QoL of Korean cancer family caregivers was differentially associated with their unmet needs according to the time lapse after cancer diagnosis and by specific domains of needs.
PURPOSE OF REVIEW: To review the evolution of family support movement for schizophrenia in India and to report perspectives of family caregivers who are running family support groups across the country in the backdrop of recent legislations in India. RECENT FINDINGS: Family support movement started in the 1990s, mostly by family caregivers independently in multiple cities across the country. Apart from periodic support meetings, they have successfully influenced recent legislations to address the felt needs of families. Mental health professionals need to gain skills to work collaboratively with assertive family caregivers to develop services to support those diagnosed with mental illness. Though there is a need for such movement, funding is poor and very few caregivers of persons with schizophrenia are forthcoming to participate. The formation of national federation with government and non-government partnership could help give the required impetus to the family support movement for persons with schizophrenia in India.
Frontotemporal dementia (FTD) is a neurodegenerative disease with symptoms that differs from other dementias. Commonly early symptoms in FTD are changes in personality and behavior, which can be interpreted as psychiatric disease. The delay in FTD diagnosis contributes to the burden of family caregivers. Therefore, it is important to have more knowledge about the pre-diagnostic stage. In this qualitative interview study, we explored fourteen family caregiver's experiences of the pre-diagnostic stage of frontotemporal dementia (FTD). Our findings suggest that the family caregivers experienced the pre-diagnostic stage of FTD as changes in the interpersonal relationship with their loved one. These changes were often subtle and difficult for family caregivers to explain to others. The findings from our study illuminate the importance of medical staff paying attention when a next of kin is concerned about subtle changes in a loved one. The findings also illuminate that awareness of FTD should be raised.
The reviewed study addresses the needs of the family caregivers of transplant patients in Iran and as the title suggests examines both psychosocial needs and quality of life (QoL), the results of which highlighted the importance of the provision of assurance and information for family caregivers.
Purpose: Although family caregivers (FCs) of older adults with cancer (OACs) provide invaluable assistance by fulfilling multiple tasks along the cancer trajectory, evidence suggests that their needs are poorly assessed, and there is a scarcity of supportive interventions that influence their well-being. Viewing these issues as opportunities for improvement, we conducted this qualitative study to understand FCs’ needs and identify promising needs-focused interventions. Methods: This descriptive interpretive qualitative study was conducted in Quebec, Canada, in a French Canadian Oncology Clinic. Participants were FCs who were spouses or adult children (n = 25) of OACs aged 70 years or older. Data were collected via focus groups and were analyzed using an ongoing analytic process following each interview. Results: Three types of needs were of particular importance: information, relationships between FC and others, and care for oneself. The need for information was described in terms of the content, timeliness, and modalities in which information should be verbalized and delivered. The need for relationships specifically targeted health care providers (HCPs), family members, and OACs. The need to care for oneself was recognized as important throughout the cancer trajectory but also represented a challenge. Participants proposed innovative ideas for interventions, resources, and strategies for each type of need. Conclusions: According to our results, HCPs should systematically include FCs into OACs’ care plan through the use of concrete actions such as the “family systems approach” suggested by Duhamel, and integrate a systematic FC’s needs assessment.
Background: People with dementia (PWDs) and their informal caregivers frequently report difficulties in maintaining their usual activities. We had previously developed a set of indicators to estimate whether dyadic, activating interventions can meet these needs for activity. This study investigates how PWDs and informal caregivers talk about the indicators in interviews for needs assessments, and how professionals identify activity needs and preferences. Our research goal was to explore the usefulness of the indicators for assessing the activity needs of community-dwelling dyads. Such assessments are needed for appropriate referral to activating interventions. Methods: A dementia case manager assessed the needs of community-dwelling PWDs and their informal caregivers; we carried out secondary analyses on the dataset resulting from the audio-tapes and transcripts. We applied qualitative, deductive content analysis because we wanted to identify both explicit and implicit needs and preferences. We used the indicators that we had developed in previous research as codes. Results: Both PWDs and informal caregivers do explicitly mention needs, preferences, and characteristics related to the indicators in the needs assessments. Possible implicit needs and preferences were frequently identified in their stories. Conclusions: Needs-driven care requires high-quality needs assessments. Both PWDs and their informal caregivers need encouragement to express their latent needs and preferences. In addition, latent needs and preferences have to be further explored in needs assessments to find out the real meaning. The outcomes of this study highlight the significance of structured needs assessments for mapping the activity needs of PWDs and their informal caregivers. Many PWDs and informal caregivers reported activity needs, which suggests that activating interventions may be appropriate. The indicators can help professionals identify activity needs so that they can discuss matching activating interventions with the dyad.
The World Alzheimer’s Report estimates that 4.1 million people in India have dementia. Caregivers of persons with dementia face physical, psychological, social and financial problems related to caring for a person with dementia. Literature on the caregiving experience however is highly specific to the sociocultural context and cannot be generalized. In low and middle income countries much of the caregiving takes place in people’s homes and is provided by family caregivers. Aim This study aims to explore the needs and challenges of family caregivers in Chennai, India. Method Focus group discussions and in-depth interviews were conducted using a topic guide. Participants were divided based on socio-economic status to ensure homogeneity. An inductive thematic approach was used to analyse and code the data. A total of 19 participants took part in the study. Results The results capture the experience of caregivers of persons with dementia in seeking help and accessing treatment. Priority caregiver needs were identified, including the need for sensitised, skilled health workers, information on dementia and advanced care needs and cost effective services. Conclusion The findings of this study strongly support the need to strengthen health systems capacity, make the health care services dementia friendly and cost effective. The influence of culture in shaping help seeking was evident in our findings. Interventions for caregivers and persons with dementia need to be developed and tested so they might be made fit for purpose and scaled up. It will be important to identify how these services can be adapted for use in low and middle income country resource setting like India.
Context: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS. Objective: The purpose of this study was to generate a rich description of the realities of living with ALS, equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers. Methods: This study employed a mixed-methods design, with quantitative data supplementing a larger body of qualitative data. Semi-structured interviews with 42 key stakeholders, including patients, family caregivers, and health-care providers, were analyzed for themes essential for effective understanding of ALS. Results: Identified themes were organized into 2 broad categories: (1) biopsychosocial needs of patients with ALS and family caregivers and (2) the impact of ALS on spiritual and emotional well-being. Quantitative data supported the recognized themes, particularly with regard to challenges associated with preserving independence, securing sufficient social support, and managing the emotional complexities of the disease. Conclusion: Study findings illustrate the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The complex biopsychosocial needs experienced by patients and family caregivers suggest numerous opportunities for meaningful palliative care involvement.
Aims and objectives The aims were to (a) identify how many older people with cognitive impairments are living in modified homes and (b) explore associated factors, and (c) examine the mediating effects that their caregivers’ information needs and perceptions of fall risk and other factors. Background Older people and their informal caregivers may consider implementing home modifications as an effective strategy for fall prevention. However, there is a lack of information on which older people's homes receive modifications and the various factors associated with such modifications among community‐dwelling older people with cognitive impairments. Design This cross‐sectional and correlational study utilises a secondary data analysis. Methods The data for this secondary analysis were taken from the 2015 National Online Survey of Caregivers, which includes information provided by 226 adult caregivers for older people with cognitive impairments. Descriptive analyses, hierarchical binary logistic regression and structural equation modelling were performed based on the Andersen and Newman framework of health services utilisation. Results Overall, 46.5% of the older people lived in modified homes. Older people's impaired activities for daily living (ADLs), caregivers’ information needs and perceptions of fall risk were all associated with home modifications (all p values<0.05). Caregivers’ information needs mediated the relationship between impaired ADLs and home modifications (indirect effect = 0.026, p < 0.05), whereas the caregivers’ perceptions of fall risk did not. Conclusions Older people with both cognitive and functional impairments are more likely to modify their home on behalf of care recipient's staying at home. Caregivers’ information needs should thus be prioritized when considering home modifications to facilitate caring for older people with impaired ADLs. Implication for practice Nurses and other healthcare professionals should be prepared to offer appropriate information and comprehensive assessments of older people's conditions with regard to home modifications.
In order to maintain an ethos of involvement and collaboration, there is a need for services and professionals to work with carers in ways that complement and enhance their roles so that they are able to maximize their capacity to care for their relative.
Rationale: Little direction exists on how to integrate early palliative care in chronic obstructive pulmonary disease (COPD).Objectives: We sought to identify patient and family caregiver early palliative care needs across stages of COPD severity. Methods: As part of the Medical Research Council Framework developmental phase for intervention development, we conducted a formative evaluation of patients with moderate to very severe COPD (forced expiratory volume in 1 s [FEV1]/FVC < 70% and FEV1 < 80%-predicted) and their family caregivers. Validated surveys on quality of life, anxiety and depressive symptoms, and social isolation quantified symptom severity. Semi-structured interviews were analyzed for major themes on early palliative care and needs in patients and family caregivers and across COPD severity stages. Results: Patients (n = 10) were a mean (±SD) age of 60.4 (±7.5) years, 50% African American, and 70% male, with 30% having moderate COPD, 30% severe COPD, and 40% very severe COPD. Family caregivers (n = 10) were a mean age of 58.3 (±8.7) years, 40% African American, and 10% male. Overall, 30% (n = 6) of participants had poor quality of life, 45% (n = 9) had moderate-severe anxiety symptoms, 25% (n = 5) had moderate-severe depressive symptoms, and 40% (n = 8) reported social isolation. Only 30% had heard of palliative care, and most participants had misconceptions that palliative care was end-of-life care. All participants responded positively to a standardized description of early palliative care and were receptive to its integration as early as moderate stage. Five broad themes of early palliative care needs emerged: 1) coping with COPD; 2) emotional symptoms; 3) respiratory symptoms; 4) illness understanding; and 5) prognostic awareness. Coping with COPD and emotional symptoms were commonly shared early palliative care needs. Patients with very severe COPD and their family caregivers prioritized illness understanding and prognostic awareness compared with those with moderate-severe COPD. Conclusions: Patients with moderate to very severe COPD and their family caregivers found early palliative care acceptable and felt it should be integrated before end-stage. Of the five broad themes of early palliative care needs, coping with COPD and emotional symptoms were the highest priority, followed by respiratory symptoms, illness understanding, and prognostic awareness.
Purpose: To identify the information and communication needs of Hispanic family caregivers for individuals with Alzheimer’s Disease and Related Dementias (ADRD) and the manner in which online tools may meet those needs. Methods: We conducted 11 participatory design sessions with 10 English- and 14 Spanish-speaking urban-dwelling Hispanic family caregivers and gathered data using a survey, collage assemblage, and audio and video recordings. Four investigators analyzed transcripts of audio recordings with a coding framework informed by several conceptual models. Results: Participants had an average age of 59.7 years, were mostly female (79.2%), and had cared for a family member with ADRD for an average of 6.5 years. All participants accessed the Internet at least once a week with 75% ≥ daily. Most used the Internet to look up health information. All participants reported caregiver attributes including awareness of the disease symptoms or behaviors. The majority reported information needs/tasks (91.7%), communication needs/tasks (87.5%), and need for online tools (79.2%). Conclusion: Hispanic caregivers of individuals with ADRD reported key information and communication needs/tasks. Only Spanish-speaking participants reported Internet and technology use deficits suggesting the requirement for further technology support. Data show a need for online tools to meet the needs of caregivers.
Background: Families of patients with organ transplants experience many problems, both with the onset of illness and during the hospitalisation of their relative for an organ transplant. The healthcare providers try their best to give high-quality care to patients. However, they neglect quality of life and psychosocial needs of family caregivers. Aims: This study aimed to assess the psychosocial needs and quality of life of the family caregivers of post-transplant patients and the relationship between these two variables. Methods: This descriptive correlational study was conducted on liver, kidney and bone marrow transplant wards in the largest transplant centre affiliated with a university of medical science in south-eastern Iran. The sample included 230 family caregivers of post-transplant patients, who were selected using quota sampling. Data were collected using the 45-item questionnaire of psychosocial needs (the Critical Care Family Needs Inventory) with five dimensions (assurance, comfort, information, proximity and support), and the Short Form-36 Quality of Life questionnaire with eight scales (physical functioning, physical problems, emotional problems, social functioning, pain, vitality, mental health and perception of health). In the Critical Care Family Needs Inventory, 1 indicates not important and 4 very important. In the Short Form-36 Quality of Life questionaire, 0 indicates the worst health and 100 the best health. Results: The participants rated the mean of their psychosocial needs as important (3.18 ± 0.27). Also, the mean of quality of life of participants was at an undesirable level (45.17 ± 92.66). The psychosocial needs of the caregivers showed a poor, inverse significant relationship with their quality of life (r = −0.16, p = 0.01). Conclusion: The results showed that with increasing psychosocial needs of family caregivers of post-transplant patients, their quality of life declines. Healthcare providers should implement developed plans and appropriate strategies to fulfil psychosocial needs and improve the quality of life of family caregivers of these patients.
Background/aim: Technological solutions can support the elderly, improve their quality of life and reduce isolation and loneliness. The Euro-Japan ACCRA (Agile Co-Creation for Robots and Aging) project has the objective of building a reference co-creation methodology for the development of robotic solutions for ageing. The aim of this study is to provide a pilot qualitative analysis of the real needs of elderly people and their caregivers when exposed to conversational activities with robots and to identify priority needs that should be developed from end-user perspectives. Methods: A qualitative research design was adopted to define a pre-structured questionnaire that was administered to the elderly taking part in the piloting sessions. Three groups of end-users were included: subjects with an age ≥ 60 years, informal caregivers and formal caregivers. Results: The interviews were carried out in Italy and Japan. A total of 17 elderly and 36 caregivers were recruited. Common needs in the two sites were categorized into 3 groups: Communication; Emotion Detection and Safety. General robot acceptance level is good and perception is positive among participants in the pilot sites. Conclusion: A positive perception of the elderly on the application of a robotic solution was found and many are the needs that could be addressed by an appropriate and careful robotic development taking into account the real needs and capabilities of the involved subjects.
In recent years, the clinical context for cancer has changed, and it is now characterized by extended survival rates and more diverse and complex cancer trajectories and symptomatology. The changes in the landscape of cancer care also include a shift towards the home setting or the outpatient setting with an increased amount of care being delivered at home or transferred to the patients themselves and their family caregivers. These changes have also impacted the type and amount of information required by the patients and their caregivers as well as the type of care needs that are to be addressed by health-care professionals. Finally, the transitions within the health-care setting might also create a caring gap that the patient is left to deal with independently or with minimal support. These changes have led to the emergence of innovative digital/technological solutions for supporting patients during their cancer care continuum.
BACKGROUND AND PURPOSE: The informal care demands of primary malignant brain tumor (PMBT) patients include unique issues associated with neurological and cognitive symptoms. Existing caregiver needs questionnaires do not include these disease-specific symptoms, which are particularly distressing. Therefore, we have developed the neuro-oncology Caregiver Needs Screen (CNS) and evaluated its psychometric properties. METHODS: The 32-item instrument was developed based on PMBT caregiver interviews (N = 109) and expert review. The CNS was tested along measures of depression, anxiety, burden, and mastery in 122 PMBT caregivers. Principal components analysis was used to examine item properties and internal structure. Internal consistency reliability and construct validity were assessed. RESULTS: Six subscales were identified with internal consistency ranging between alpha = .653 and .857. Convergent validity was verified by moderate/high correlations between measures of caregiver well-being and CNS scale scores. CONCLUSIONS: Findings provide preliminary evidence of reliability and validity for the CNS. This instrument can be useful when assessing caregivers' needs for supportive care.
While dementia caregivers are regarded as a population with high unmet needs, there is little consensus as to how caregivers’ needs should be conceptualized and measured. This article describes how dementia caregivers’ needs are currently assessed in the scientific literature with the goal of suggesting guidelines for the enhancement of future measurement of caregiver needs. A review of 26 articles identified overarching themes within measurement approaches including variation in methodological rigor, proxy indicators of need, dual needs assessment of caregiver and person with dementia (PWD), and third-party needs assessment. We recommend future research dedicate theoretical attention to the conceptualization and classification of caregivers’ needs to build a stronger foundation for measurement. The measurement development process should capitalize on mixed-methodology and follow instrument development and validation guidelines set forth by measurement theory. Reliable and valid instruments are essential to developing services and policies that address dementia caregivers’ needs.
Family caregivers often serve as unpaid members of the home and community-based care workforce for people with serious illness; as key partners in the home-clinic continuum, they should be included in health care teams. The Campaign for Inclusive Care is an initiative within the Veterans Affairs health care system to improve provider practices for including caregivers of military members in treatment planning and decisions. We defined inclusive care using a literature review, provider interviews, and a caregiver survey. We found that inclusive care involves clear definition of the caregiver role, system policies for inclusion, assessment of caregivers' capacity, explicit involvement of caregivers, and mutuality in caregiver-provider communication. We recommend solutions based on this definition that can inform development of a national caregiver strategy, required of the Department of Health and Human Services by the Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2018.
Background: Informal caregivers provide a large amount of day-to-day assistance and are crucial for the ability of survivors to recover and adapt to life after stroke.; Aim: The development of caregiver support programs is limited by lack of large long-term follow-up studies. We present a comprehensive study of Swedish stroke caregivers' life situation in relation to degree of functional dependency of the survivor.; Patients and Methods: In 2016, the Swedish Stroke Register, Riksstroke, conducted a long-term follow-up survey on caregivers to patients with stroke three and five years earlier. Items on psychological well-being were adapted from the 36-item short-form health survey and poor outcome was defined using the 36-item short-form health survey reference material. Survivor degree of dependency was indicated by the caregiver as independent, partially dependent, or completely dependent.; Results: A total of 5063 community dwelling dyads were included: 56.5% of survivors were independent, 33.4% partially dependent, and 10.1% completely dependent. Caregiver life impact, need of support, and proportion of poor psychological well-being increased incrementally with survivor degree of dependency. In the completely dependent group where 41.1% of survivors could not be left unattended for more than 1 h, 23.7% of caregivers expressed unmet need of caregiver support; 51.4% reported poor psychological well-being compared to 19.3% in the independent group.; Conclusion: The caregiver situation varies greatly with degree of survivor dependency which makes generalizations of caregiver needs difficult. Our results emphasize the need for integrating support aimed specifically at caregivers to survivors of stroke with a large degree of dependency.
Purpose : In this qualitative interview study we investigated the experiences of family members to cancer patients. Our objective was to explore and to differentiate their needs from the needs of cancer patients. Methods : Five focus groups and six individual narrative interviews with 17 family members to cancer patients in Sweden were conducted and compared with 19 cancer patient interviews. Our analysis was inspired by classic grounded theory. Results : Family members to cancer patients expressed own morbidity connected to high stress levels and difficulties in recognizing own stress due to ongoing comparisons with the cancer patient. Family members were trapped in a momentary terror-like situation where they became their sick relative’s safety net. A percieved inability to improve their loved one’s well being contributed to a feeling of guilt. The longing for it all to end was encumbered with shame since the end included possible death. Conclusions : By recognizing cancer as a disease striking both body and relationships, family members are given precedence over their own struggles, differentiated from the patient’s experiences. We define differences in needs between cancer patients and family members. Family members to cancer patients may be supported in developing balancing strategies towards less stress, increased safety and moments of contentment.
Problem/background: Post-discharge healthcare for patients with neurological conditions is indicated to be suboptimal. Aim: To capture hospital discharge experiences and ramifications among patients with neurological conditions, and informal caregivers, and their recommended solutions. Methods: A modified World Café was held November 2016. A facilitator moderated structured group discussions about post-discharge challenges, displayed real-time in GroupMap. Using the software's voting, ratings of priority challenges/issues and solutions were tabulated to identify whole group consensus. Findings: Eleven adults with neurological conditions (five females) and four adult informal caregivers (three females) participated. Major post-discharge challenges were: (i) inadequate self-management instruction, (ii) feeling discharged too early, (iii) family pressured to support patient without capacity, (iv) financial impact, (v) difficulties accessing social services, (vi) social isolation, (vii) inadequate support services, and (viii) poor communication with, and between, healthcare providers. Top-ranked solutions were: (i) counseling services at symptom onset, (ii) community neurological nurse referrals to, and liaison with, services, (iii) improved communication with general practitioner, (iv) community neurological nurse facilitating financial assistance, and (v) social worker in pre-diagnostic period facilitating financial assistance and support. Discussion: Peridischarge, patients and informal caregivers face a complexity of information and services, and struggle to self-manage conditions, experiencing burden that jeopardises their health and wellbeing. Proposed solutions to post-discharge challenges emphasise self-management, psychosocial support, care coordination, health system navigation, and communication. Conclusion: Generic community neurological nurses could link hospital and community-based services. Research is required regarding which translational and after hospitalisation care model improves care coordination and continuity, and care recipients’ capacity.
The purpose of this study was to explore the experiences and feelings of people caring for patients with long-term diseases in a rehabilitation centre. A qualitative research approach was used. Fifteen informal carers were interviewed. The study was conducted in a rehabilitation centre in Greece. Three themes emerged. The first was feelings regarding the patient and the carers themselves, as well as the type of care provided and life at home after discharge from the rehabilitation unit. The second was experiences regarding health professionals and delivered care, and other carers. The third theme was expectations and thoughts about the future. Health professionals should plan and implement support interventions within rehabilitation settings in order to address carers' needs in terms of practical guidance not only within the framework of patient care but also relating to the psychological and physical wellbeing of informal carers.
In the act of caring for and helping people in the end-of-life process, the professional who provides care and assistance must know how to maintain a relationship of closeness, empathy, and compassion for the pain and suffering of the person who is going to die. The objective was to understand, elaborate on, and characterize the key elements of end-of-life care of patients from a caregiver's perspective through a qualitative phenomenological multicenter study. Participants were caregivers who had lost a family member at least 2 months but less than 2 years in the past. The techniques used were 5 discussion groups and 41 in-depth interviews, which included a total of 81 participants. To analyze the information, a protocol developed by Giorgi was followed. Two dimensions or units of meaning, with subdimensions, emerged: (1) Technical competence, with the subdimensions "Control of symptoms" and "Continuity of care," and (2) Compassion, with the subdimensions "Effective/affective communication," "Attitudes of kindness and closeness toward the patient and the family," and "Generosity and personalized flexibility of care." Assistance at the end of life requires the proper preparation of professionals who care for these patients, in addition to a compassionate attitude on the part of professionals and the people accompanying the dying person, that fosters a more humanized and dignified treatment in the dying process.
Objective: To identify care and support needs, as reported by people with dementia and their spousal carers living in the community in metropolitan Western Australia. Methods: An interpretive description approach was utilised. Semi‐structured interviews were conducted with 10 dyads of spousal carers and people with dementia. Comparative analysis was used to develop themes regarding need, which were reviewed using two focus groups of spousal carers. Results: Three major themes were developed through analysis of data from the interviews and were refined by the focus groups: (a) environmental enablers to support care; (b) strong caring relationships; and (c) adaptation of daily life roles. Conclusions: As dementia progresses, continued support to maintain participation in meaningful activity is needed. Strong caring relationships, knowledge and an understanding of dementia among health professionals, service providers and family members were key to maintaining support for the needs of people with dementia and their spousal carers.
Objective: To explore how caregivers are involved in making treatment decisions for older people living with dementia and a new diagnosis of cancer. Method: A systematic review of PubMed, CINAHL, PsycINFO, Web of Science, and Scopus databases was conducted. Studies recruiting formal or informal caregivers for older people with dementia and a diagnosis of cancer were considered for inclusion. Results: Of 1761 articles screened, 36 full texts were assessed for eligibility, and six were included in the review. This review has identified that health care professionals (HCPs) are often unaware of the coexistence or severity of dementia in cancer patients, and therefore fail to properly address care needs as a result. While caregivers are relied on to help make decisions, they have unmet information needs and feel excluded from decision-making. Conclusion: Treatment decision making in the context of older adults with dementia and a new diagnosis of cancer needs further research. This will help HCPs to understand their needs and improve the experience of decision making for both caregivers and the people that they care for.
Objective: The objective of this review was to synthesize evidence on the experiences and perceptions of spousal/partner caregivers of community-dwelling adults with dementia.; Introduction: Currently 47 million people in the world have a diagnosis of dementia and this number is predicted to climb to 75 million by 2030. The majority of care is provided by family members, particularly spouses/partners. Quantitative systematic reviews of spouse/partner caregivers demonstrate negative health effects for these caregivers. This review synthesized the qualitative evidence on the experiences of spousal/partner caregivers of people with dementia to further understanding how this care and the context of care contribute to the health and wellbeing of spousal/partner caregivers.; Inclusion Criteria: This review considered qualitative studies that explored the experiences of spousal/partner caregivers providing care for adults with dementia. The focus was on qualitative designs including, but not limited to, phenomenology, grounded theory, ethnography, action research, critical research and feminist research.; Methods: The search strategy used a three-step approach and was aimed at locating both published and unpublished studies. Key databases included: MEDLINE, CINAHL, Embase, PsycINFO, Sociological Abstracts, ISI Web of Science, and Dissertation Abstracts International. Grey literature was searched using keywords from the database searches. The databases were searched from inception to February 2017 and a mix of controlled vocabulary (i.e. MeSH, CINAHL headings) and keywords were used to capture all existing qualitative studies related to the experiences and perceptions of spousal/partner caregivers providing unpaid care for adults with dementia. During the title and abstract screening, only English and French articles were included. The recommended Joanna Briggs Institute approach to study selection, critical appraisal, data extraction and data synthesis was used. Seven of the 10 critical appraisal criteria were deemed essential, with exceptions identified for criteria 1, 6 and 7.; Results: Nineteen studies were included in the review. Study designs included phenomenology (eight), grounded theory (five), qualitative description (four), ethnography (one) and narrative inquiry (one). The total number of participants was 248 (164 women and 84 men). The overall quality of the studies was rated as moderate on the ConQual score, with dependability rated as moderate and credibility rated as high. One hundred and fifty-five findings were aggregated into four categories and two synthesized findings. The two synthesized findings were: "the expectation to care in the midst of uncertainty and unpredictability", and "the caregiver as hostage".; Conclusions: This review provides a comprehensive understanding that can inform spousal/partner caregiver policies and programs. Evidence is required on the experiences and perceptions of caregivers across the gender continuum. Interventions and interventional research that mobilizes the evidence to date is essential for the future of caregivers. The limitations to this review include: the possibility of missed studies, all study participants being in heterosexual relationships, and the majority of participants being Caucasian. Recommendations for practice, policy and research include: the need for awareness of the extent of change in the lives of the person with dementia and the spousal/partner caregiver, the importance of support and respite, the need to tangibly recognize the value of the unpaid caregiver in a way that preserves the health and wellbeing of this group, and research is required that is culturally sensitive and reflects the experiences of the lesbian, gay, bisexual, transgender, transsexual, queer, questioning, intersex, asexual, ally, pansexual (LGBTTQQIAAP) populations.
Purpose: To explore the experience of caregivers of family members with schizophrenia.; Design and Methods: A qualitative approach was adopted to examine the experience of caregivers of people with schizophrenia. The researcher conducted semi-structured interviews with 16 participants recruited through purposive sampling.; Findings: The change findings encompassed five major themes: (a) loss of personal life, (b) mixed emotions, (c) changes in family relationships, (d) the need for professional support and help, and (e) coping strategies.; Practice Implications: Clinicians, including nurses, must be aware of the cultural importance of mental illness, particularly the widespread cultural beliefs and patterns of help-seeking behaviors, to provide culturally sensitive health care and develop empirical strategies for helping both these caregivers and their dependents.
Background: As older adults approach the end‐of‐life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL. Objective: This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care. Method: A descriptive qualitative study involving three focus group discussions (n = 18) and six in‐depth interviews with older adults suffering from either a terminal condition and/or caregivers were conducted in NSW, Australia. Data were analysed thematically. Results: Seven major themes were identified as follows: quality as a priority, sense of control, life on hold, need for health system support, being at home, talking about death and competent and caring health professionals. An underpinning priority throughout the seven themes was knowing and adhering to patient's wishes. Conclusion: Our study highlights that to better adhere to EOL patient's wishes a reorganization of care needs is required. The readiness of the health system to cater for this expectation is questionable as real choices may not be available in acute hospital settings. With an ageing population, a reorganization of care which influences the way we manage terminal patients is required.
Objectives: To review the family caregivers' unmet needs in the long-term phase of survivorship to identify unique challenges faced by family caregivers.; Data Sources: Research-based articles and published reports.; Conclusion: Family caregivers diverge into three distinct groups in the long-term survivorship phase: those remaining in care, those whose patients have survived and where care is no longer needed, and those whose patients have died. Their primary unmet needs vary by the different caregivership trajectories.; Implications For Nursing Practice: Comprehensive understanding of family caregivers' unmet needs is required to develop family caregiver care plans in long-term survivorship.
Most long‐term care for older adults in the United States is provided by informal caregivers (Ahmad, [Ahmad, K., 2012]), the majority of whom experience an intense range of emotions from satisfaction to loneliness. Counselors must consider this emerging population of caretakers and learn methods to encourage clinical services to address their need for support. This article delineates experiences and challenges of informal caregivers and provides suggestions for effective clinical services for caregiver populations.
Dementia is one of the costliest and most time-consuming diseases among older persons. Although informal caregivers provide the majority of care for persons with dementia, little is known about the self-perceived need for social services of caregivers of persons with dementia within rural areas. This pilot study examined the knowledge, access and intent of the practice-oriented service model of caregivers of persons with dementia in rural communities in the Midwest U.S. After a systematic training, researchers interviewed 11 rural caregivers of persons with dementia (n = 11). Data were analyzed using thematic analysis. Although similarities with other caregivers of persons with dementia were found, important differences suggesting unique issues among these rural caregivers of persons with dementia. Many participants found strength in their community, which often served as a safety net of support. Consistent with existing literature, participants expressed financial concerns, geographic barriers and lack of dementia-specific services when using formal services. The need for more specialized formal services in rural areas to supplement existing informal care networks is discussed. Policies and services based on rural caregivers' unique concerns and challenges and that build upon their existing care networks are recommended.
Melanoma is the deadliest form of skin cancer. In Australia, where this study was conducted, there were 1,281 deaths from melanoma in 2016. Treatments for melanoma have changed rapidly in recent years with the introduction of immune and targeted therapies. These have resulted in longer term survival for some, but it is not clear which patients these treatments will work for, and for how long. This study aimed to understand the impact of melanoma treatments, as they relate to diagnosis and prognosis, on the experiences of family carers. Interviews were conducted with twenty carers of patients who were treated at three melanoma centres in Australia and who subsequently died. The study found that diagnosis of advanced melanoma was a time of uncertainty as carers struggled to understand the implications of the diagnosis. Treatment options in the form of relatively new immune and targeted therapies added to uncertainty around prognosis (i.e. the likely outcome, such as chance of survival). Carers reported unclear communication of prognosis by medical specialists. Some carers reported that medical specialists did not want or were not able to give a prognosis. Many carers expected that treatments would have positive outcomes. The study findings indicate that medical specialists should recognise and address carer understanding of and need for information about prognosis as early as possible following diagnosis. Communication of the uncertain benefit of these new therapies can help patients and carers make decisions about treatment preference and care planning
Introduction. Informal Primary Caregivers (IPC) of people with borderline personality disorder (BPD) experience a significant burden, making it important to determine their specific needs. Objectives. Cross-sectional study aimed at adapting and establishing the reliability of the Questionnaire on the Needs of Family Members of People with Severe Mental Disorders to identify felt and unfelt needs that may or may not have been met in IPCs of patients with BPD and suggest intervention strategies to effectively address them. Method. The adapted version of the instrument was completed by 80 IPCs of patients with confirmed BPD diagnosis. Results. Cronbach’s alpha coefficients for different groups of needs evaluated through the instrument were: Knowledge/information = .77, Instrumental support = . 78, Participation = .63, and Personal support = .74; and for the total score = .86. The most important unmet felt needs were: 1. having information on interventions for patients and caregivers, legal and administrative aspects, and available support services; 2. having coping skills to deal with crises and manage patients’ risk behaviors; 3. receiving professional care to reduce stress; and 4. being listened by health professionals, express their personal opinions, and need for rest. Conclusions. The adapted instrument showed satisfactory internal consistency in IPCs of patients with BPD. The results highlight the urgent need for interventions for this population, focusing on psychoeducation, assertiveness training, stress management, and problem solving.
Background: The aim of the present study is to analyse the variables associated with the family care of people diagnosed with serious mental illness.; Material and Methods: A cross-sectional study was carried out involving caregivers of people with serious mental illness (SMI) who were known to the mental health services in Valencia (España) and associations for those with SMI. The sample comprised 417 caregivers who completed a sociodemographic questionnaire and the Zarit Burden Interview. Bivariate analyses (t-test, analysis of variance and Pearson correlation) were performed, as was a multiple linear regression model. Values of p < .05 were considered significant. The study was carried out in accordance with the recommendations of the ethics committees of the participating institutions.; Results: The statistical analyses showed significant associations between the sociodemographic and clinical variables of the caregivers and patients and the burden felt by caregivers of people with SMI. The importance of both formal and informal social support stands out as a protective factor against the consequences of the illness's impact on the main caregiver.; Conclusions: The role of spaces of mutual support is crucial. The results suggest that family psychoeducational programmes should be created, applied and evaluated in all mental healthcare services so as to reinforce training in mental health matters and provide support and assessment to caregivers in order to ease their burden.
Many stroke survivors require care from informal carers such as family members and friends who may experience adverse impacts. This study aimed to qualitatively explore the unmet needs of carers of stroke survivors, and their preferences for interventions and support services. We conducted 24 semi-structured, qualitative interviews with carers of stroke survivors from the Hunter region, Australia. Inductive thematic analysis was used in the context of a needs-led framework to identify key themes of their unmet needs. Key unmet needs identified by carers of stroke survivors in this study centred on four main themes: (1) social relationships and support; (2) adequacy of information; (3) taking care of oneself; and (4) accessing appropriate services. Carers of stroke survivors desired the development of services which provide connectivity to information, training, education and community support; and inclusion in a community with social relationships and other carers of stroke survivors. Ongoing unmet needs often result in adverse health and quality of life outcomes for carers of stroke survivors. Co-designed programs and resources for carers, particularly relating to unmet needs in social, information, self-care and service access domains are needed.
Technology has been identified as an important strategy in making caring sustainable. This article takes the design process for carer support technology as a lens on the divergent definitions that are in play when governments, technology developers and carers contemplate 'sustainability'. We argue that a central impediment to finding a productive point of overlap among the three perspectives is a predominant focus on carers' needs. We contrast this needs-based approach, and its focus on doing the tasks of care, with a goal-oriented approach focused on being in relationships. Reframing the conversation around goals is important to achieving truly sustainable caring.
Unpaid carers are the backbone of our society who often go unrecognised for their dedication and compassion. They face a range of challenges as they attempt to juggle their work-life-care responsibilities. That’s why we decided to commission YouGov to conduct a UK-wide research project focused on identifying gaps in support and sought to understand the views of unpaid carers.
Key findings
The impacts of loneliness, poor mental and physical health, financial worries and a lack of flexibility to learn or train are placing unpaid carers under increasing strain.
When carers were asked about their support needs, a sizable majority (74%) of carers felt that further support in some form would be useful to them, with a common desire for emotional support (33%). Carers also sought information and advice about the support available, respite care, and finances. Our report also found that there was a need for advice about maintaining good mental and emotional health, shining a light on the often unexpected levels of stress, isolation and despondency felt by unpaid carers.
Objectives: Stroke survivors require assistance and support in their daily lives. This survey aims to investigate the needs and rights awareness in Chinese stroke survivors and caregivers in rural and urban settings.; Setting: This survey was adapted from the one created by the World Stroke Organization. The questionnaire included demands for psychological support, treatment and care, social support and information. From January 2015 to January 2016, the survey was pilot tested with urban and rural-dwelling stroke survivors and caregivers from 12 hospitals. Stroke survivors were invited to participate if they were over 18 years old and had experienced a stroke. Exclusion criteria were patients who had disorders of consciousness, significant cognitive impairment, aphasia, communication difficulties or psychiatric disorders. Only caregivers who were family members of the patients were chosen. Paid caregivers were excluded.; Participants: One thousand, one hundred and sixty-seven stroke survivors and 1119 caregivers were enrolled.; Primary Outcome Measures: The needs of stroke survivors and caregivers in rural and urban areas were compared. The correlations between needs of rural and urban stroke survivors and caregivers and potential effect factors were analysed, respectively.; Results: Among the cohort, 93.5% reported the need for psychological support, 88.6% for treatment and care, 84.8% for information and 62.7% for social support. The total needs and each aspect of needs of stroke survivors in urban settings were greater than of those in rural settings (p<0.01). In rural areas, total needs and each aspect of needs were positively correlated with education level (p<0.01).; Conclusions: Needs and rights awareness of stroke survivors should also be recognised in both urban and rural China. According to the different needs of patients and their caregivers, regional and individualised services were needed by stroke survivors and their caregivers.
Both service needs and needs of the caregiver may differ across the lifespan for individuals with autism spectrum disorder (ASD). As individuals with ASD age, they may need different services, which can place different burdens on the family. The present study aimed to determine the needs of both the individual with ASD and the family caregiver across the lifespan, as well as what experiences are important to families that may not be captured by quantitative measures. Data for the present study were taken from a large, online survey of family members of individuals with ASD. Participants were primarily mothers, with children ranging from early childhood to adulthood. The survey used a list of various services that could be used by individuals with ASD and the Family Needs Questionnaire to examine service needs and usage. Service needs and usage were compared by age category (childhood, adolescence, and adulthood). Most categories of service needs and usage differed by age, although the percentage of unmet service needs was quite high across all ages. Family members of adolescents or adults tended to report fewer individual needs than did family members of children. In open‐ended responses, families frequently discussed lack of services, worry about the future, and challenges with family and social relationships. Overall findings indicate a still‐high level of unmet service needs for individuals with ASD and their families. Although most basic health needs are met, more specific needs, such as therapy services and employment services, are received by comparatively few families. This has the potential to negatively impact families as the child with ASD ages, despite caregivers reporting fewer personal needs for older individuals.
Background: Although home hospice organizations provide essential care for and support to terminally ill patients, many day-to-day caregiving responsibilities fall to informal (ie, unpaid) caregivers. Studies have shown that caregivers value receiving clear information about end-of-life (EoL) care. Meeting the information needs of this group is critical in improving their experience in hospice.; Objectives: To identify the information needs of informal home hospice caregivers.; Design: One hundred five semi-structured phone interviews with informal caregivers were conducted. Study data were analyzed using a standard qualitative method (ie, content analysis).; Participants: Informal home hospice caregivers whose loved ones have been discharged (death or live discharge) from an urban, nonprofit hospice organization.; Measured: Participants' information needs were ascertained by assessing whether information regarding hospice was or was not fully explained or whether there was information they wished they knew prior to the hospice transition.; Results: Among study participants, 48.6% had unmet information needs related to (1) general information about hospice (n = 17, 16.2%), (2) what to expect at the EoL (n = 19, 18.1%), and (3) support provided by hospice (n = 30, 28.6%). Specifically, caregivers expressed the need for more information on what hospice is, caring for a dying patient, and the day-to-day care hospice provides.; Conclusion: Our study indicates that approximately half of the informal caregivers had unmet information needs. Further research is needed to identify efficacious strategies to best meet the information needs of this group. Specific topics that need emphasis include what hospice care is, what to expect at the EoL, and what level of support hospice offers.
OBJECTIVES: To determine the feasibility and acceptability of a validated electronic distress screening program for cancer caregivers. SAMPLE & SETTING: 17 informal caregivers presenting with a patient with cancer to an ambulatory cancer surgery center. METHODS & VARIABLES: Caregivers completed the CancerSupportSource®--Caregiver screening and a brief semistructured interview concerning the screening. RESULTS: Caregivers described the screening as straightforward and comprehensive. They endorsed concerns about their self-care needs but were most likely to request information or a referral for patient-focused concerns. Referrals generated from the program are likely viably addressed with existing supportive care resources. IMPLICATIONS FOR NURSING: Brief, caregiverfocused distress screening is perceived positively by caregivers. Caregivers indicated that they felt it validated the importance of their role and highlighted the hospital's efforts to continually improve care. This screening program may be particularly beneficial in ambulatory surgical centers to efficiently identify caregivers with concerns and provide a point of entry to remediate these concerns.
Objectives: This study aims to explore the subjective lived experience of informal caregivers supporting an individual with dementia.; Design: This study uses the interpretive phenomenological approach utilizing the method of photo-elicitation and in-depth semi-structured interviews.; Methods: Six individuals were given a disposable camera to capture photographs which they felt illustrated their own lived experiences of being a caregiver of an individual living with dementia. Photographs were printed and used to form discussion within an in-depth semi-structured interview. The photographs provided an innovative way of capturing the lived experiences of formal dementia caregivers and allowed the interview data to be grounded in their daily living, centring around their own lived experiences.; Results: Three themes emerged from data analysis: 'conceptualising the role of informal caregiver', 'support for the informal caregiver', and 'the caregivers own needs'.; Conclusions: Findings demonstrated the complexity of the relationship between the caregiver and the person living with dementia, and the shift in this relationship specifically due to the role of carer, with notable differences between spousal caregivers and adult-child caregivers. The importance of social, emotional, and practical support for caregivers was highlighted, as well as significance of the caregiver's individual needs. Statement of contribution What is already known on this subject? Informal caregivers of individuals living with dementia cover much of the associated health care costs. Informal caregiving of individuals living with dementia can lead to negative health outcomes of the carer. Health outcomes of informal caregivers living with dementia are grounded in culture and are influenced by multiple factors. What does this study add? The complexity of the transition from family member to informal caregiver has both a physical and emotional impact on caregivers. The transition, and experiences of informal caregiving, is dependent on the relationship to the individual living with dementia. Caregiver support and recognizing the caregiver's individual needs were imperative to caregiver well-being.
Background: Informal caregivers are an essential pillar for ensuring and maintaining the outpatient care of the frail elderly. Due to demographic changes, including an increase in the number of people in need of care as well as changing social structures (full-time employment of women, increasing number of single households, etc.) these informal care structures are fraught by considerable challenges. To support and facilitate informal caregivers in their role of nursing, it is important to identify their preferences, needs, and thus create a preference-oriented system.; Methods: A systematic review was conducted to identify preferences and needs regarding the organization of informal care. The database searches were performed by using EMBASE, Scopus and Dimdi.; Results: A total of 44 studies were included in the present review. Studies from 17 different countries provide broad international perspectives. Besides the preferences for long-term care structure, the following four principal topics were identified: (1) informational needs; (2) support needs; (3) organizational needs, and (4) needs for societal recognition.; Conclusion: To meet the current challenges in the outpatient or home-based care of elders, it is essential to strengthen the role of informal caregivers. Therefore, it is necessary to adopt and further develop informal care structures according to the needs of informal caregivers. However, demographic, financial and cultural aspects of each country need to be considered as these may influence the preferences and needs of informal caregivers.
Family carers of people with dementia often describe feelings of guilt, grief and low mood, and are also at increased risk of clinical depression. Through a skilled assessment of a carer’s feelings of guilt, an Admiral Nurse identified specific psychological approaches helpful in relieving this potentially damaging and paralysing phenomenon. Person- and family-centred approaches throughout the assessment process, and addressing the needs of individual family members in expressing their individual emotions and experience to the changes in needs of the person with dementia as they become more complex, are essential to family wellbeing. Identifying and differentiating between guilt, anticipatory grief and depression are essential when planning interventions to support family carers.
[The same article is also published in British Journal of Neuroscience Nursing Vol 14, no. 6 https://doi.org/10.12968/bjnn.2018.14.6.286 ]
Palliative and hospice care aims to improve quality of life of patients' relatives, but still little is known about their specific problems and needs. We present a comprehensive literature update. Narrative review to present an expert overview of peer-reviewed, English-written original research publications and reviews on psychosocial and existential problems, supportive needs as well as interventions for relatives during the patients' disease trajectory published between January 2017 and November 2018. A total of 64 publications were included. Relatives report high rates of psychological and existential distress, burden and psychological morbidity during the total disease trajectory of the patient. In addition, relatives report an alarmingly high number of unmet needs with information being the central issue. Relatives' problems and needs are part of complex systems influenced by various socio-demographic factors and patient⁻relatives-interactions and dependency between different psychological phenomena. First support interventions for relatives during disease trajectory have proven feasible and secondary data from randomized studies suggest beneficial effects of providing early palliative care also for relatives. Relatives should be addressed to a still larger extent in the daily practice of palliative and hospice care, thus further research to reveal more detailed systematic information is needed to improve relatives' psychological burden and quality of life.
Family caregivers are an increasingly diverse group of individuals who provide significant amounts of direct and indirect care for loved ones with long-term chronic illnesses. Caregiver needs are vast, particularly as these relate to the caregiver"s quality of life. However, caregivers are often unlikely to address their personal and health-related concerns. Unmet needs combined with the caregiving role often lead to high levels of caregiver anxiety. Unaddressed, this anxiety is likely to result in poor health and low quality of life. Nurses, along with the health care team, are well positioned to assess, monitor, intervene, and reassess anxiety levels in caregivers using standardized screening tools across care settings. This article focuses on the family caregiver anxiety symptom in community-based settings, where health care providers have unique opportunities to detect this symptom in a familiar environment and begin immediate intervention leading to promotion of quality of life for the caregiver and subsequently the care recipient. Additional research efforts should be focused on health care provider goals of care, dyadic assessments, and monitoring of caregiver needs while caring for their loved ones aging in place.
The purpose of this study was to identify, classify and analyze the perceived needs of caregivers of elderly people with dementia during the care process. A descriptive phenomenological qualitative study using seven focus groups was conducted in different primary health care centers in the province of Jaén (Spain) between July 2012 and February 2013. Eighty-two family caregivers who were caring for people with dementia in different stages of the disease were selected by purposeful maximum variation sampling. Data were analyzed and organized thematically, considering the semantic and pragmatic content and field notes. Two main categories of the perceived needs of caregivers were identified. The first was related to the management of caring for a relative with dementia, and the second was related to the management of the caregivers' own care. Our findings support the provision of comprehensive interventions for the improvement of caregivers' emotional health that encompass more than one care need. This is where psycho-educational interventions aimed at managing the various aspects of dementia and self-care in caregivers can be accommodated. In addition, proactive interventions to develop important skills to care for a relative with dementia, which are not perceived as needs by the caregivers, are needed. These include skills in family negotiation, planning and searching for resources outside the family.
Background: People with intellectual disabilities are living longer, with increasingly complex needs and their family caregivers may have a broad scope of unmet needs. Aims: To identify the most common needs of family caregivers, to identify gaps in the literature, and distinguish the information needs of family caregivers of people with intellectual disabilities who require palliative care. Methods: This two phase literature review used five electronic databases (CINAHL, PsycINFO, Medline, Cochrane and Pubmed). Phase 1 involved a review of systematic reviews of the needs of family caregivers across healthcare settings. Phase 2 explored the commonly reported information needs from phase 1, in relation to family caregivers of people with intellectual disability who require palliative care. There was no research explicit to the information needs of these family caregivers. Findings: This review reveals potential information needs which may exist, guided by the palliative caregiving literature; alluding to information needs surrounding the disease, finances, and psychological or practical support. Conclusion: It is surmised that a greater scope of informational need exists for this population and further research is pertinent for international healthcare settings.
Background: Internationally, it is widely accepted that holistic care is as an integral part of the care for people with motor neurone disease (MND), and their informal carers. However the optimal role of generalist and specialist palliative care, and how it integrates with specialist neurology services, is not fully established. Using a qualitative approach we sought to examine end of life care for people with MND in Northern Ireland, and the role of specialist and generalist palliative care. Methods: Qualitative study involving a convenience sample of 13 bereaved carers recruited using the Northern Ireland MND Register. Data collection consisted of semi-structured interviews with the bereaved carers of patients who had died 3–24 months previously with a diagnosis of MND. Data were analysed using thematic analysis. Results: Findings illuminated variations in relation to the levels of holistic care provided to this cohort of patients. Unmanaged respiratory and psychological symptoms caused perceived distress amongst patients. Participants' experiences additionally highlighted reluctance amongst patients with MND to engage with services such as specialist palliative care. Conversely, for those who received input from specialist palliative care services carers portrayed these services to be of great benefit to the patient. Conclusions: Patients with MND in Northern Ireland may have many unmet holistic care needs. Key areas that require particular focus in terms of service development include neuromuscular respiratory physiotherapy and psychological services for patients. Future research must explore an optimal model of holistic care delivery for patients with MND and how this can be effectively integrated to best meet this patient cohorts palliative care needs.
Objectives: To identify experiences, needs, interventions and outcomes for caregivers of persons with Alzheimer's disease or related dementia as they transition into this new role following diagnosis.; Design: Scoping review of published literature.; Data Sources: A search for published articles was conducted in PsycINFO, Scopus, Ovid and Web of Science databases.; Review Methods: The Arksey and O'Malley methodological framework guided the review. Studies were screened independently for inclusion by two persons. A total of 955 studies, after duplicates removed, were found by the database search. From these, 127 full-text articles were retained through the screening of titles and abstracts by two reviewers. The two reviewers assessed 46 full-text articles for eligibility. The final 29 studies identified caregiver experiences, needs, and interventions during the period following a diagnosis of Alzheimer's disease or related dementia in the scoping review.; Results: Twenty-nine studies were organized around three major categories: i) family caregiver experiences on receiving the diagnosis (n = 23), ii) needs during this time of transition (n = 18), and iii) interventions and outcomes to support their transition into the caregiver role (n = 5). While studies may have addressed more than one topic, 16 studies intersected categories of both caregiver experience and needs, and one study intersected categories of needs and interventions. There were several studies that focused more specifically on the caregiver's initial reactions to a diagnosis of Alzheimer's disease or related dementia (n = 9), the emotional responses to the diagnosis (n = 14), changes in personal relationships and responsibilities with a new role (n = 16). Caregiver needs following the diagnosis included knowledge and information (n = 14), emotional and psychological support (n = 11), and assistance with care planning (n = 7). Five papers examined interventions specifically tailored to caregiver needs at this juncture, which support the transition into the caregiver role.; Conclusions: The time of receiving a diagnosis of Alzheimer's disease or related dementia is a critical period in the process of transitioning into caregiver role. This period marks a new phase in the process of caring by family caregivers. Thus, it is important to fully understand the experiences and needs of caregivers and effective interventions in order to better support their transition into this new role.
In 2018, a survey found that 82% of the Irish population, across all age groups, had used the internet in some way in the three months preceding the survey (Central Statistics Office, 2018). Ninety-seven percent of those aged between 16 and 29, and nearly half of those aged between 60 and 74, had done so. It is clear, then, that increasingly the internet is becoming a tool that must be understood and utilised as a viable way to supplement supports for family carers.
In order to discover how family carers in Ireland are using – and could be using – online services and supports, Care Alliance Ireland (in consultation with the National Carers Week partner organisations) undertook a survey of Irish family carers in April 2019.
300 family carers responded online, and a summary of their responses are included here. The purpose of this report is to highlight how family carers are using the internet to connect with others, to get supports and information from not-for-profit and statutory agencies, and to manage their lives as family carers. It should be noted that this is not a representative sample of Irish family carers – the survey was administered online and disseminated via the National Carers Week Facebook page and other online channels.
Internet supports are not, of course, a substitute for significant one-to-one supports. There will always be a need for the timely and adequate provision of in-home respite, therapies and all the other supports which are necessary to create a positive environment for a family carer to provide the best possible care to a family member or friend. However, if used in conjunction with existing supports they can be a source of peer support and a way to tackle the social isolation and loneliness that many family carers experience – in particular in rural and geographically isolated locations.
This editorial discusses the availability of resources to support carers and recommends a better focus on family-centred care.
PURPOSE: We examined associations between caregiving intensity and mental health among cancer caregivers at the population level and potential moderation by an actionable intervention target, support service needs. METHODS: Behavioral Risk Factors Surveillance System survey data (2015) from caregivers of adult patients with cancer was analyzed. Caregiving intensity included hours per week caregiving (high, > 20; low, ≤ 20) and caregiving duration (long, > 2 years; short, ≤ 2 years). Mental health was reported as number of mentally unhealthy days (MUDs) in the past 30. Support service needs comprised caregiving classes, service access, support groups, counseling, and respite care. Multivariable linear regression models were performed adjusting for sociodemographics and sampling weights. RESULTS: A total of 1,831 caregivers were included in the study, representing approximately 1.1 million cancer caregivers in the 18 US states, distributed with the following intensity: 122 (8.3%) caregivers reported care at high hours/long duration, 213 (13.1%) high hours/short duration, 329 (18.4%) low hours/long duration, and 910 (60.2%) low hours/short duration. Mean MUDs was 6 (SE, 0.5). The highest reported unmet service need was help with service access (48.4%). Higher caregiving intensity and support service need were associated with more MUDs (P <.05), with a significant interaction (P =.02) between caregiving intensity and unmet support service needs. High hour/long duration caregivers reporting any unmet needs had a mean of 15 versus 8 MUDs for those with no unmet needs. CONCLUSION: High-intensity cancer caregiving was associated with poor mental health, especially for those reporting support service needs. Developing strategies to optimize support service provision for high-intensity cancer caregivers is warranted.
Purpose: Family members make an important contribution to informal and formal care, as well as the overall health and wellbeing of individuals with spinal cord injury. Caregiving often results in negative outcomes which, if not addressed, threaten the sustainability of these critical supports. We sought to explore the perceptions of individuals with spinal cord injury and their family caregivers regarding the facilitators and barriers to undertaking and sustaining the caregiving role in the community.; Methods: A qualitative descriptive approach with semi-structured interviews. Thematic analysis was employed to determine key themes arising from individuals with spinal cord injury (n = 19) and their family members' (n = 16) experiences.; Results: The following four facilitators to caregiving were identified: access to community support services, positive coping in relationship, social support, and mastery of caregiving roles. Conversely, the following six barriers to caregiving were identified: lack of access to community resources, lack of knowledge about resources and formal training, fragmented continuity of care, negative coping in relationship, role strain, and caregiver injury or illness.; Conclusions: The current study demonstrated that positive coping, social support, skills training, access to community services and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. As such, the development of future caregiver interventions should consider these facilitators. Implications for Rehabilitation Family caregivers make an important contribution to the care processes and overall quality of life of individuals with spinal cord injury post-discharge into the community. The potential negative effects of caregiving could threaten the sustainability of these critical supports. Positive coping, social support, skills training, access to community services, and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. This study shows the need for better integration of family members during the rehabilitation and discharge process to better prepare them for the caregiving role.
Purpose: Informal carers may experience a range of unmet needs during the caring period and, at times, lack support to adequately manage care of the person with cancer and balance personal family and work commitments. The aim of this study was to understand the needs of informal carers of people with cancer and how digital technology may be used to address carers' needs.; Methods: Focus groups and semi-structured interviews were conducted with 45 carers. Carers discussed supports and services they used to address their needs, barriers to accessing support, and how digital technology could assist in meeting their needs.; Results: Carers used informal support such as friends and family and formal support including respite and community groups during the caring period. Barriers to accessing support included reluctance to seek external help, sensitivities associated with prioritising carers' needs over patients' needs, and the adequacy of information received. Technology was reported to have the potential to allow carers' privacy to seek support; however, carers' attitudes towards technology differed.; Conclusions: Carers require support during the caring period to help balance their own needs with the needs of the person receiving cancer treatment. Digital technology may provide an opportunity to deliver support to carers; however, further research is needed to assess the appropriateness of these interventions to inform improved health outcomes for this vulnerable group.
Dementia affects individuals, families and their relationships. While there is increasing evidence about the experiences of family caregivers of people with dementia, relatively little is known of their experiences when their relatives are living in nursing homes with dementia. This narrative literature review aimed to synthesise current knowledge about family caregivers' experience of having relatives living in nursing homes with advanced dementia, particularly focussing on community-dwelling spouses. Using a systematic approach, textual narrative synthesis was undertaken. Four themes were identified: changing relationships, the need for companionship, adjusting to new roles and relationships and anticipating death/looking towards the future. Two additional themes were present only for spouses: changing identity – feeling married, being married; and alone but... The review demonstrates that some aspects of spouses' experiences are different from those of other family caregivers. Longitudinal studies are required to better understand spouses' motivations to continue caring in this context and to find ways of supporting them.
PURPOSE: Family caregivers are instrumental to patients with gynecologic cancer and can be deeply affected by the demands of caregiving. Our aims were as follows: (1) increase awareness of unmet needs of caregivers and (2) identify and prioritize the unmet needs of caregivers and essential support services to be provided in gynecologic cancer centers. METHODS: From July 2017 to June 2018, a 16-person steering committee and 40 stakeholders, including caregivers, patients, and clinicians, participated in a modified Delphi approach to generate, review, and prioritize a set of essential elements for caregiver support. Stakeholders prioritized caregiver needs and brainstormed, discussed, and prioritized essential support services to meet those needs, using three rounds of a consensus-building protocol. Basic descriptive statistics were performed to feed means and rankings back to stakeholders before each round. RESULTS: The top three caregiver needs were as follows: (1) to obtain information about their loved one's cancer, (2) how to provide support and comfort to their loved one, and (3) how to maintain their own emotional health and well-being. Fifteen essential elements of support for caregivers of patients with gynecologic cancer were identified and ranged from elements currently attainable (eg, information on managing symptoms, skilled-care training, a point person to help navigate the system) to more aspirational elements (eg, integrative services to promote caregiver well-being). CONCLUSION: To ensure comprehensive quality care, clinicians and health care providers should strive to provide caregivers with the identified essential elements of support. Health care settings should work to incorporate caregiver needs into cancer care delivery.
Aim: Percutaneous renal biopsy is often essential for providing reliable diagnostic and prognostic information for people with suspected kidney disease, however the procedure can lead to complications and concerns among patients. This study aims to identify and integrate patient priorities and perspectives into the Kidney Health Australia – Caring for Australasians with Renal Impairment clinical practice guidelines for renal biopsy, to ensure patient‐relevance. Methods: We convened a workshop, consisting of three simultaneous focus groups and a plenary session, with 10 patients who had undergone a renal biopsy and seven caregivers. Topics and outcomes prioritized by patients and their caregivers were compared to those identified by the guideline working group, which was comprised of seven nephrologists. Transcripts and flipcharts were analyzed thematically to identify the reasons for participants' choices. Results: In total, 34 topics/outcomes were identified, 14 of which were common to the list of 28 previously identified by the guideline working group. Most of the new topics identified by patients/caregivers were related to communication and education, psychosocial support, and self‐management. We identified five themes underpinning the reasons for topic and outcome selection: alleviating anxiety and unnecessary distress, minimizing discomfort and disruption, supporting family and caregivers, enabling self‐management, and protecting their kidney. A new topic on patient care and education was added to the guideline as a result. Conclusions: Patient and caregiver involvement in developing guidelines on renal biopsy ensured that their concerns and needs for education, psychosocial support, and self‐management were explicitly addressed; enabling a patient‐centred approach to renal biopsies. Summary at a Glance: This paper, with a patient‐centred care perspective, provides opportunities to improve care for patients undergoing renal biopsy. Meanwhile, it identifies the importance of education, psychosocial support, and self‐management for both patients and caregivers.
Objectives: Older informal carers play a vital, growing role in supporting others with long-term health conditions but their support needs and experiences are poorly understood. The aim of this study was to explore the perceptions of volunteers and professionals of the experiences and support needs of older carers (aged 70+ years). Methods: Thirty-five volunteers and professionals working with older carers in the voluntary and statutory sectors participated in a series of focus groups in outer London, United Kingdom. Groups were audio recorded, transcribed and subjected to thematic analysis Findings: Five main themes were identified. These included participants' perceptions of older carers' ambivalence about asking for support, their multiple losses, often restricted lives, social isolation and loneliness and concerns for their loved ones when they can no longer care. Overall, these themes are similar to those reported for adult carers in general but older carers' experiences were regarded as more challenging primarily because of their pride, attitudes to caring and because of their age, their own health was often declining making the physical aspects of caring and leaving their homes more difficult. Concerns about the future are thought to be particularly important for older carers of adult children with disabilities because they expect to be outlived by their children, although similar concerns were voiced by spouses of partners living with dementia. Conclusions: Professionals and volunteers need to consider these additional challenges for older carers. Support with accessing services, for example from the voluntary sector, is important as is future exploration of how to support older carers in planning for the future care for their loved ones is needed.
Background: To explore informal caregivers' perspectives and perceived needs related to health care services/activities for older adults with dementia, in order to understand barriers and facilitators to participation. The study represents a first step, and explores challenges to overcome, in order to design new activities and services adapted to older adults with dementia.; Methods: We used a qualitative approach where eight caregivers of people with a dementia diagnosis were included. We recruited participants from a counselling service centre, for home dwelling people with dementia and their families, in a Norwegian municipality. We transcribed data from two focus group interviews and completed analyses by use of Systematic Text Condensation method.; Results: The findings indicate that current health care services for people with dementia do not meet the needs of either the people with dementia or their caregivers. The few activities/services offered are characterised by passivity and lack of individual and personalised care. Existing health care services and new activities should consider each individual's resources, interests, and physical function to ensure that both people with dementia and their caregivers want to accept support.; Conclusions: To develop health care services and activities for people with dementia, participation and involvement from both people with dementia and their caregivers is necessary. People with dementia are more than their diagnosis. Future health care providers have to widen their focus and consider the individual person with dementia.
Background and Aims: Several studies have shown the effectiveness and diversity of dementia cafés, whereas there are few published articles in academic research focusing on what persons with dementia and their family caregivers need and whether the services provided satisfy their needs. This study aimed to identify the needs of persons with dementia and their family caregivers participating in dementia cafés in Japan.; Methods: Interviews and participant observations were conducted in nine dementia cafés. Study participants were persons with dementia, their caregivers, and the staff in dementia cafés. Data were analysed using qualitative content analysis.; Results and Discussion: A total of 24 participants were recruited. Needs for persons with dementia were subdivided into five categories: to express their feelings about their current condition; to be accommodated through consideration of their physical and cognitive status; for changes in their health conditions to be noticed; to enjoy entertainment; and to keep in touch with others inside and outside of the dementia café. Needs for family caregivers were subdivided into four subcategories: to express their feelings such as anxiety and guilt and complaints regarding caregiving; to consult about difficulties in daily life; to listen to other family caregivers' experiences; and to keep in touch with others inside and outside of the dementia café. The needs of persons with dementia and family caregivers differ partly.; Conclusions: Dementia cafés should create programmes and comfortable environments answering to the differences of their needs.
Introduction: In the United States, informal caregivers (ICs) provide care to over 70% of patients at the end of life. Approximately 500 000 ICs contribute to the end-of-life care for patients in the United Kingdom. Hospice care is expanding worldwide to meet the needs of these ICs. Because ICs play an instrumental role in the provision of hospice services, and their perspective of their needs of formal services requires further clarity, the purpose of this review is to synthesize research that elucidates perceptions of ICs regarding their experiences with hospice providers.; Methods: Twelve research studies regarding perceptions of informal hospice caregivers were obtained by searching CINAHL, PsycINFO, and MEDLINE databases.; Results: Four primary themes emerged that describe what ICs perceive as beneficial contributions of hospice providers in aiding their caregiving: providing easy access to desired care, building up the caregiver, forming a relationship, and utilizing culturally relevant interpersonal skills.; Conclusion: Particular attention must be paid to ensuring that the IC is acknowledged as an expert part of the team. Clearly explaining available services, creating better ways to ease the IC's transition from caregiving to bereavement, and recruiting minority hospice providers are other important efforts that could improve the caregiving experience. The needs of ICs are complex, but by listening to their perspective, we can begin to clarify the best ways to aid them in their difficult job.
Rationale& Objective: Fostering the ability of patients to self-manage their chronic kidney disease (CKD), with support from caregivers and providers, may slow disease progression and improve health outcomes. However, little is known about such patients' needs for self-management interventions. We aimed to identify and describe the needs of adults with CKD and informal caregivers for CKD self-management support.; Study Design: Descriptive qualitative study using semi-structured interviews and focus groups.; Setting& Participants: 6 focus groups (37 participants) and 11 telephone interviews with adults with CKD (stages 1-5, not on renal replacement therapy) and informal caregivers from across Canada.; Analytic Approach: Thematic analysis.; Results: 3 major themes were identified: (1) empowerment through knowledge (awareness and understanding of CKD, diet challenges, medication and alternative treatments, attuning to the body, financial implications, mental and physical health consequences, travel and transportation restrictions, and maintaining work and education), (2) activation through information sharing (access, meaningful and relevant, timing, and amount), and (3) tangible supports for the health journey (family, community, and professionals).; Limitations: Participants were primarily white, educated, married, and English speaking, which limits generalizability.; Conclusions: There are opportunities to enhance CKD self-management support by addressing knowledge pertinent to living well with CKD and priority areas for sharing information and providing tangible support. Future efforts may consider the development of innovative CKD self-management support interventions based on the diverse patient and caregiver needs identified in this study.
Background: Family caregivers play crucial roles in taking care of people experiencing schizophrenia in the community. The burdens on and needs of caregivers of these patients should be emphasized. This study aimed to explore the perspective of family caregivers of people experiencing schizophrenia in the communities of Beijing in terms of the burdens of care and the acquisition and further need for support in order to provide guidance to health care providers regarding how to target therapeutic interventions for families of individuals experiencing schizophrenia and to provide recommendations for policy makers to tailor countermeasures and services.; Methods: A total of 20 family caregivers of schizophrenia patients were enrolled in our study. A face-to-face and semi-structured in-depth qualitative interview study was conducted to explore the caregivers' perspective on the burden on caregivers, support and further needs. This study was conducted in the community health service centres where the family caregivers regularly visit. The study was carried out according to good ethical practices, data analysis and reporting guidelines.; Results: Most participants reported that they were suffering from heavy life burdens and had negative experiences with respect to obtaining social support, and they emphasized that they would require more support. Economic and daily housework burdens, limited social communication, and psychological stresses were the principal burdens. Support including financial, medical and information and educational support did not satisfy the needs of the caregivers and their patients. More financial support, respect, and rehabilitation institutions were reported to be needs of the caregivers.; Conclusions: Family caregivers of people experiencing schizophrenia suffer from heavy physical and psychological burdens; however, the current support provided is insufficient. More services and better public attitudes should be considered for people experiencing schizophrenia and their caregivers.
Background: Caring for patients with a progressive neurological disease (PND) causes stress that may impact on the state of health as well as the quality of life of the caring family. Objective: The aim of the study was to explore the unmet needs of the family members of patients with PND in advanced stages. Methods: Grounded theory (constructivist approach) was used to conceptualize the patterns of unmet care needs. Data collection methodology involved focus groups (n = 4) and interviews, in which a total of 52 people participated (patients, family members, and professionals). Results: Based on the data analysis, three domains (family situation, role of the caregiver, and professional help) were identified, which illustrate the unmet needs. In particular, lack of information about the disease and available support available resulted in a deterioration mutual understanding between the patient, family, and the medical staff; also increased stress for the caregiver, and lowered quality of life for the caring family. Conclusion: Family members expect health workers to provide them with support, which includes informing them about the possible help available from the health and social welfare systems.
Objectives Caregivers of terminal patients often report a higher prevalence of unmet needs than cancer survivors. However, very few interventions have been carried out to support caregivers of patients in advanced stages, and, in most cases, they have not been rigorously designed and evaluated. The ultimate aim of this research was to obtain specific information about the sociodemographic characteristics, the different types of care provided, the symptoms due to burdens, the impact of caring on the quality of life, and the unmet needs of informal caregivers of dependent patients with cancer. This is to design effective intervention programs that can be implemented from the hospital setting itself and therefore, to improve their quality of life and prevent the deterioration of their health. Study design A cross-sectional design and survey methodology were used for descriptive purposes. Methods The sample was composed of 132 informal caregivers of dependent patients with cancer, from a public hospital in Valencia, Spain, who were identified through the patient database of the oncology service, over the 4-month data collection period. Self-administered questionnaires were combined with personal interviews: Interview Protocol for the main caregiver, Questionnaire ICUB97, and survey of hospital quality. Results The most frequently provided types of care included the following: keeping the patient company, acting as an intermediary between them and healthcare workers, and helping them to do basic daily life activities. The main negative consequences caregivers reported were the following: feeling more tired, having less free time, changing their daily routines, and having fewer social relationships/interactions and various emotional and physical symptoms. Many of the needs of informal caregivers were not being met: resolution of doubts about illness, training in the care they should provide to the patient, and psychological help. Conclusions Recommendations for the development of effective intervention programs are offered: increasing the psychological services provided in oncology units, training medical staff in communication skills, facilitating access to information about the disease through different means, training for informal caregivers in care techniques, coping and communication skills, self-care, and organization of time. On the one hand, implementing effective intervention programs for informal caregivers will reduce the amount withdrawing from their care duties and on the other hand, the proliferation of what are known as secondary patients. Highlights • Caregiving women were more prevalent than men, with an average age of 45 years, and a medium socioeconomic status. • The most frequently provided cares were helping patients in basic activities and mediating between them and medical staff. • The main negative consequences for caregivers were changing daily routines and various emotional and physical symptoms. • The main unmet need of caregivers was specific information and training about the care they should provide to the patient.
Cancer care delivery is being shaped by growing numbers of cancer survivors coupled with provider shortages, rising costs of primary treatment and follow-up care, significant survivorship health disparities, increased reliance on informal caregivers, and the transition to value-based care. These factors create a compelling need to provide coordinated, comprehensive, personalized care for cancer survivors in ways that meet survivors' and caregivers' unique needs while minimizing the impact of provider shortages and controlling costs for health care systems, survivors, and families. The authors reviewed research identifying and addressing the needs of cancer survivors and caregivers and used this synthesis to create a set of critical priorities for care delivery, research, education, and policy to equitably improve survivor outcomes and support caregivers. Efforts are needed in 3 priority areas: 1) implementing routine assessment of survivors' needs and functioning and caregivers' needs; 2) facilitating personalized, tailored, information and referrals from diagnosis onward for both survivors and caregivers, shifting services from point of care to point of need wherever possible; and 3) disseminating and supporting the implementation of new care methods and interventions.
Background: Although palliative care is expanding globally for patients with serious illness, Turkey has not had widespread integration of early concurrent oncology palliative care. Hence, adapting and testing models of concurrent oncology palliative care for Turkish patients is imperative. Furthermore, it is critical that these care models also address the needs of family caregivers.; Objective: To assess needs and elicit suggestions that would inform the adaptation of the ENABLE (Educate, Nurture, Advise, Before Life Ends) evidence-based early palliative care model for Turkish family caregivers of older persons with cancer.; Methods: Formative evaluation study. Semi-structured interviews were conducted with 25 primary family caregivers of older individuals with cancer. Thematic analyses yielded themes in four domains: meaning of caregiving, effect of caregiving, education and consulting needs, and preferences about the delivery of the ENABLE model of palliative care support.; Results: Caregivers described the impact of the cancer on their daily lives and responsibilities in the areas of physical, psychological, work, social, and family life. Caregivers emphasized their needs for information about symptoms, physical care, cancer pathology, and prognosis. Regarding the ENABLE model of early concurrent palliative care, participants wanted encounters to be in-person with educational material support that was simple and focused on disease information (prognosis, medication, handling emergency situations), psychological support, caring, nutrition, and acquiring community services.; Conclusion: Themes from this study will be used to modify the ENABLE intervention protocol for future pilot and efficacy testing in Turkish caregivers.
Background: The progressive and complex nature of dementia demands carers have specific knowledge and training. However, often carers do not have adequate knowledge and skills, particularly for functional disability care. Aim: This study aims to develop and test the feasibility of an educational and supportive mHealth/smartphone application that addresses the needs of family carers of people with dementia related to functional disability of care recipients. Methods: This mixed method study consists of three phases. In phase one, an online survey and individual interviews with carers will be conducted to assess their needs related to management of functional disability and the development of an mHealth application. Additionally, experts will be consulted to identify their opinions on application development. In phase two, using information from phase one, an mHealth application will be designed and developed. In phase three, a feasibility study will be conducted with carers to identify usability, user adherence, acceptance and experiences with the application. Discussion: This study will generate new knowledge about the needs of carers related to the management of functional disability of people with dementia and the use of smartphones for health-seeking behaviours, and will develop an mHealth application for carers to address the needs related to functional disability care. Conclusion: A mixed method study was designed to develop a user-centred educational and supportive mHealth app for family carers to address needs related to the functional disability of people with dementia consisting of three phases: needs assessment, the designing of the app and a feasibility study.
Due to projected growth of the 65-and-older population and concerns of an impending care gap, reliance on informal caregivers is expected to increase. Improving support for informal caregivers is viewed as a national priority, yet research related to the unmet support needs of informal caregivers is limited. The purpose of this cross-sectional correlational study was to examine predictive relationships between contextual factors (caregiving relationship and type of illness) and environmental factors (rurality) and the unmet support needs (classes, service access, support groups, counseling, and respite) of informal caregivers of older adults. The theoretical framework was Bronfenbrenner’s ecological systems theory. Archival data were drawn from the 2015 Behavioral Risk Factor Surveillance System optional caregiver module dataset provided by the Centers for Disease Control and Prevention. Findings from multiple logistic regression analysis revealed that spousal caregivers had 42.7% lower odds than adult child caregivers of reporting unmet support needs related to service access. Dementia caregivers had 2.05 times higher odds of reporting unmet support needs of counseling, 1.31 times higher odds of reporting unmet support needs related to service access, and 1.91 times higher odds of reporting unmet support needs for respite care, relative to other caregivers. Caregivers residing in a suburban county had 28.7% lower odds and caregivers not residing in a metropolitan statistical area (MSA) had 30.5% lower odds of reporting unmet support needs related to service access, relative to caregivers residing in the center city of an MSA. Health care leaders and policymakers may use the findings to distribute resources and tailor interventions to better meet the needs of informal caregivers of older adults.
Objective: The support and service needs of people with dementia and their carers are not always addressed in rural regions, yet family carers play an important role in supporting the person living with dementia to remain living in their own home. This study sought to identify and prioritise service and support needs of people with dementia and carers. Design: A two-phase mixed methods study involving qualitative focus groups and a survey. Setting: A rural region in Victoria, Australia. Participants: People living with dementia, carers and health professionals. Results: Focus groups identified 12 areas of need. A follow-up survey reached consensus on the priority areas for service improvement. These included diagnosis and information access, dementia training, community understanding and carer support. Conclusion: Living in a rural region imposes significant challenges on people with dementia and carers. We need to find ways to address gaps in service provision for carers and people with dementia in rural settings and examine their applicability in other rural regions more broadly.
Background: Informal caregivers of people with dementia in Beijing are increasingly called upon to provide home-based care for their patients due to the increasing number of dementia patients and the shortage of standardized institutional solutions of care for patients in China. This study aimed to clarify the needs of informal caregivers and barriers of primary care workers toward dementia management in primary care in Beijing to provide references that may help to improve the care and services provided to individuals with dementia and their family caregivers residing in urban China. Methods: A mixed-methods approach was used in this study. We performed individual in-depth interviews with 10 informal caregivers. Moreover, we carried out focus group interviews with 29 primary care workers. Content analysis was used to separately identify themes and codes. Discrepancies were discussed until final agreement was achieved. Results: Three themes representing the core attitudes of informal caregivers and primary care workers were identified: care knowledge and skills, psychological counseling, and collaborative management. Most primary care workers believed that the management of dementia patients in primary care was necessary. However, due to the heavy work load and different medical specialties involved, these workers were unable to manage it. Conclusions: Professional training focused on dementia for primary care workers should be strengthened. At the same time, the establishment of a community-based dementia team management model that includes specialists, community health service centers (CHSCs), and community committees should be explored.
Disorders of consciousness (DoC) disrupt close relationships. This study investigated the experience of a DoC in the family. Four main themes were identified from semi-structured interviews with nine females and analysed using Interpretative Phenomenological Analysis (IPA): (1) Loss without a name, (2) Relationship without a title, (3) Symbiotic relating and (4) Frozen futures. Participants' accounts showed complex losses and relationship transformations that were challenging to cope with. Participants embodied the person and experienced reductions in rehabilitation and social visits as personally abandoning and led to strong advocacy with professionals. The uncertainty created by the DoC meant participants lived in the present moment and struggled to make plans for their future. Psychological support to demonstrate a sensitivity and validation of this unique complex loss, a framework for naming the loss, provision of education about the condition and enhancing coping with a chronic situation are needed.
Background: The variety of caregiver's needs of bipolar patients signifies the importance of performing dedicated interventions to help this group of caregivers based on the cultural conditions of the country in which they live; the present study therefore seeks to address this issue through a different method. Methods: The families of 28 patients with bipolar disorder type 1 who were treated for at least two months by a single psychiatrist gradually entered the study over a six-month period. They received the phone number of the psychiatrist in attendance as soon as the patient was in remission according to the same psychiatrist's interview. A total of 1908 texts were sent and received and each family sent an average of 68.14 text messages during the three years, with the minimum being 40 and the maximum 83. All the text messages were transcribed verbatim and were evaluated by three faculty members through the qualitative content analysis method. Results: In this study we found three themes and there were some codes in each theme. 1. The first theme was "Training" which the caregivers requested advice about symptoms and tests, the course of the disease, assurance, medication side-effects and their management, how to stop smoking, how to control high-risk behaviors and double checking appointments with the physician, making for a total of 1079 text messages received. 2. The second theme was "Reporting" which contained a description of emergency symptoms and requesting advice, reporting response or no response to the medications, reporting medication adherence and dosage taken. 3. The third theme: "The expression of feelings" including the expression of gratitude, saying congratulations on national and other celebrations and expressing anger and hatred. Conclusion: Overall, the caregivers of patients with bipolar disorder have many needs; meeting these needs affects the patients' outcome and the caregivers, but requires a greater attention by the healthcare team and it is necessary for these needs to be evaluated in the context of each distinct country.
Objective: To understand the spiritual needs of the patients' family caregiver under Oncology palliative care. Method: A descriptive, qualitative study with 20 family caregivers of patients hospitalized in an Oncology palliative unit. The data were collected through a phenomenological interview, and analyzed by the method of Amadeo Giorgi supported in the Merleau-Ponty's Phenomenology of Perception. Results: The categories were unveiled: "Spirituality as a foundation for life"; "Spiritual needs sublimated by the family caregiver"; and "Care expected by the nurse". Conclusion: Family caregivers appropriate spirituality as a coping strategy and meeting the purpose and meaning of the moment experienced. It is profitable for the nurse to contemplate the spiritual needs of the caregiver in order to provide a guided assistance in the humanization of care and comprehensive care. Therefore, there is a need for new studies that address this dimension to the family caregiver in the field of Oncology, since this care is incipient by the nurse.
Family caregivers who provide care to seniors at no cost to the healthcare system are an integral part of the healthcare system. Caregiving, however, can cause significant emotional, physical and financial burden. We held a one-day symposium on how to best involve and support family caregivers in the healthcare system. The symposium brought together caregivers, healthcare providers, administrators and policy-makers to identify needs and make recommendations to address these issues. Methods Participants engaged in conversation circles which were audio-recorded and transcribed. Data were qualitatively analyzed alongside written notes provided by participants. Results Symposium participants identified a lack of both orientation and education for healthcare providers about family caregivers and standardized processes for assessing caregiver burden. They highlighted a need to ensure that the family experience is captured and included as an essential component of care, foster a culture of collaboration, expand the notion of the healthcare team to include family caregivers, provide more integrated palliative care, and enhance policies and programs to acknowledge family caregivers. Conclusion There is a need to recognize the essential role of family caregivers in seniors' health and well-being, and to take on a more comprehensive approach to patient care.
Summary: Cutaneous T‐cell lymphomas (CTCL) are rare types of skin cancer. Skin may develop tumours or ulcers. Sometimes these may cover quite large areas and feel itchy or uncomfortable. Internal body parts may be affected in more advanced disease. Only a few people are diagnosed each year (8 per million), so most GPs do not meet people with this disease. This study from the U.K. aimed to find out about the experiences of family or close friends of people who had died because of the disease (not all people with this disease die of it). Relatives of 11 patients with CTCL who had died were interviewed, four months or more after the death. The themes from what they said are described. Family members gave vivid descriptions of how the illness changed the appearance of their relative. They spoke of how difficult it was to look after someone with very damaged skin. They described the many different things they had to do to care for their relative both in hospital and at home. Some patients had frequently been in and out of hospital. Some caregivers expected them to come home each time and so had not felt prepared when their relative died. Several caregivers described how upsetting it was to see how illness affected their relative before they died. The authors say that family caregivers should be seen as part of the care team looking after the patient. They recommend that carers' needs for practical and emotional support and information should be considered during each patient's illness. Support for carers should also be offered following the death of their relative.
Background: Stroke is the second leading cause of disability in Madagascar, half of those affected are <50. All treatment must be paid for; however, 92% live on <2€/day, so informal caregivers are very important. Method: In 2017, 15 caregivers of stroke survivors were interviewed by a medical student, in the rehabilitation department of the university hospital in Antananarivo, Madagascar. A semi-structured interview guide was devised exploring their understanding of stroke, assistance in activities of daily living (ADL) (using visual cues), and care burden (based on caregiver burden tools). Audio recordings and notes were analysed using thematic analysis. Results/Findings: Caregivers often lacked understanding on preventing stroke recurrence and the extent of possible recovery. Care burden was considerable, including impact on own well-being and finances, and caregivers felt that they had little access to specialized equipment or help. Participants were desperate for information regarding stroke care and recovery; this may have influenced how they approached the interviewer, as a potential information source, and therefore not been as critical of the health service. Discussion: These findings are similar to other literature on stroke survivors and caregivers in high- and middle-income countries; no literature was found in low-income countries. Limitations to this study include that a high-income group were interviewed and a translator was used. There are no occupational therapists in Madagascar, which limits the exploration of their potential benefit. Conclusion: This study is the first to explore the needs of caregivers of stroke survivors in Madagascar, the findings of which can help to inform future work in low-income countries on stroke carers.
Aims: To identify what factors are associated with the caregiver burden of spouse caregivers, adult child caregivers, and parent caregivers. Background: Caregivers often feel stressed and perceive caregiving as a burden. The caregiver burden has been little studied from the perspective of the personal relationship between caregiver and care recipient. Design: Cross‐sectional study. Methods: A random sample of 4,000 caregivers in Finland was drawn in 2014 and those who remained either spouse, adult child, or parent caregivers at data collection were included in the analysis (N = 1,062). Data collection included recipients’ characteristics. Caregivers’ perceived burden was measured using the Caregivers of Older People in Europe index. General linear models were used to explain perceived caregiver burden. Results: Care recipients’ low level of cognitive function was associated with greater perceived burden. Higher quality of support was associated with lower perceived burden among female and male spouse caregivers, daughter caregivers, and mother caregivers. Low cognitive function explained 3–6% and high quality of support 2–5% of the total variation in the burden explained by the models, which ranged between 45–55%. Conclusion: Because cognitive challenges of care recipient are associated with greater perceived burden and high quality of support with lower burden among most of the caregiver groups, high‐quality tailored nursing interventions will be needed especially for the caregivers of the most frail care recipients
Purpose: To investigate the status of caregiver burden and to identify the factors related to caregiver burden among Chinese family caregivers of patients with lung cancer.; Methods: A cross-sectional design with convenience sampling was used in this study. Participants (N = 116) from the oncology inpatient ward at one teaching hospital in Chengdu were recruited from June 2015 to June 2016. The following measurement tools were used: a demographic questionnaire, the Social Support Rating Scale, the General Self-efficacy Scale, and the Zarit Burden Interview. Multiple linear regression analysis was used to identify factors associated with caregiver burden.; Results: The average ZBI score was 38.8 (SD = 13.4). Patient age (p < 0.01), medical and other types of insurance (p < 0.01), disclosure of the diagnosis to patients (p < 0.01), and social support of the caregiver (p < 0.05) were related to caregiver burden. Fifty-three percent of the variance in caregivers' burden was explained by these identified factors.; Conclusions: Caregiver burden was higher among Chinese caregivers of lung cancer patients compared with the results of previous studies. Patient age, medical and other types of insurance, disclosure of cancer diagnosis to the patient, and caregivers' social support are factors associated with caregiver burden. The results suggest that social support, comprehensive healthcare insurance initiatives, and culture-based communication skill training are potential areas for future intervention.
Introduction: Unpaid informal caregivers of adult care recipients, including persons with dementia, experience multiple unmet information needs and information management challenges. Objectives: To understand the current personal health information management (PHIM) practices in informal caregiving for adults with and without dementia. Methods: Semi-structured interviews were performed with ten informal caregivers-half of whom were caring for persons with dementia-and four formal caregivers at an adult day service. Interviews centered on a paper-based tool distributed by the day service, the CARE Kit, permitting an artifacts analysis of the tools used by participants for PHIM. Qualitative thematic analysis was applied to interview data. Results: Caregivers' PHIM practices aimed to support daily care management and decision-making on behalf of care recipients, through: 1) information acquisition and integration across multiple sources and records; 2) information maintenance, updating, and use over time; and 3) information sharing and communication with healthcare professionals and other family caregivers. Participants reported advantages and challenges of their PHIM practices and tools, including fitting PHIM into their daily lives, managing PHIM-related cognitive workload, the functionality of PHIM tools, and the dynamic, longitudinal nature of PHIM. Conclusion: The study produced a number of implications for caregiver health information management information technology (CHIM IT), based on findings about the nature of caregivers' practices for managing information for adult care recipients. We present CHIM IT requirements related to privacy and security, customization and flexibility, ease of use, credibility and sensitivity, situation awareness, information integration, delegation and shared use, updating and maintenance, archiving and versioning, communication, agency and information access, and validation.
Background: Personhood in dementia is about treating people with dementia with dignity and respect and in a manner that supports their sense of self. It is a key element of person-centered care and a guiding principle in dementia care policy in Ireland. However, there is uncertainty around the concept of personhood and in particular how it is operationalised within formal care provision. This research examines the experiences and perceptions of family carers of people with dementia in relation to personhood and formal care provision.
Methods: This research is theoretically based on personhood as a relational concept. Using semi-structured interviews, family carers are asked about their perceptions of personhood in dementia within the context of formal care provision, supports and services. The interview questions center on important elements of personhood such as communication, flexibility, choice, respect, dignity and self-identity. Thematic analysis is used to examine the participants’ views. A total of 15 interviews were conducted with family carers, which included, spouses, children and siblings of people with dementia living both in the community and in long-term care.
Results: Preliminary results indicate that family carers and people with dementia had little to no choice in the services and supports provided to them. They were accepting of the services they received but identified elements of services which were not supporting of personhood. Some family carers were disappointed by the limited to no supports offered to them.
Conclusion: These findings are very relevant to dementia care in Ireland, both to the design of the system as a whole and also to the provision of care at an individual level. The results are significant for policy makers seeking to ensure that personhood is central in the implementation of current dementia policy and in the regulation of future formal care provision for people with dementia in Ireland.
Researchers have established associations between the stressors of providing informal care and caregiver health risks. Despite the negative consequences, researchers have identified the existence of protective factors that have the potential to buffer or prevent stress. The purpose of this study was to determine the relationship between self-efficacy and stress in adult informal caregivers providing end-of-life care. This cross-sectional, associational study analyzed data from questionnaires completed by adult informal caregivers providing end-of-life care for an adult in North Texas. Questionnaires provided measures of self-efficacy, stress, and caregiver perceived health. Findings indicated caregiver self-efficacy globally had a significant correlation with stress, whereas caregivers' confidence in caring for themselves had a significant negative relationship with perceived stress. Specifically, study findings indicate caregivers with greater confidence in managing demands of caregiving have lower levels of stress, and caregivers with greater confidence in caring for themselves, specifically, have lower levels of perceived stress. Study findings highlight the importance of caregivers' self-care needs. Health care practitioners should recognize and intervene to support caregivers' self-care needs in order to prevent additional, needless health problems in this population.
Background/Aims: Families require more specialised support to manage behaviours of concern following acquired brain injury within community settings. Evidence supports the involvement of family caregivers in behaviour interventions, however there are no validated behaviour support approaches for individuals with acquired brain injury emphasising family involvement. This research aims to (1) gain insight from rehabilitation professionals and family caregivers on best practice in behaviour support following acquired brain injury in community settings, and (2) obtain feedback on the proposed Family-directed Positive Behaviour Support Programme, which aims to enhance the capability of family caregivers in supporting behavioural changes in an individual following acquired brain injury. Methods: Rehabilitation professionals (n=8) and family caregivers (n=3) completed a three-round Delphi study with the aim of reaching consensus (75% agreement) regarding research objectives. Findings: All items presented regarding best practice in supporting family caregivers with behaviour support reached consensus. Results were used to refine the content and format of delivery of the Family-directed Positive Behaviour Support programme. Conclusions: Findings suggest an agreement regarding what support is needed, yet this is still not being provided. The Delphi process has made significant contribution to the Family-directed Positive Behaviour Support programme, which aims to inform a family-directed approach to behaviour support following acquired brain injury in community settings.
Accessible Summary: Asthma is a problem for many people. Some people need help with their medicines for asthma. People who help with medicines should know how medicines work and how they are used. This study found that many helpers need more education about asthma medicines. Abstract: Background: People who have an intellectual or developmental disability (IDD) and asthma are at greater risk of poor health outcomes. They often require assistance from caregivers when managing their medicines. The objective of this pilot study was to assess the level of understanding of asthma self‐management concepts of family caregivers who provide assistance to people who IDD and asthma. Results will inform future needs assessment and intervention studies. Materials and Methods: Nineteen caregivers of people who have asthma and IDD completed a mailed survey. The survey included scales to measure asthma self‐management concepts, inhaler technique knowledge, medication adherence and control of asthma. The caregivers were instructed to complete most of the scales with reference to the person with IDD. Results: Most caregivers had acceptable health literacy, but had low scores on the asthma self‐management and inhaler technique tests. The most frequently cited barriers to controlling asthma were inadequate caregiver and patient education about the illness as well as knowing and avoiding asthma triggers. The most frequently cited barriers to medication management were knowing inhaler technique, knowledge of medication and forgetting to use medication. Asthma was controlled in 63.2% of patients, while almost 75% of patients were considered nonadherent to controller therapy. Conclusions: Most caregivers had inadequate understanding of asthma self‐management as well as inhaler technique despite having high health literacy. Improving caregiver and patient knowledge and skills may lead to better asthma control.
Chronic diseases are mostly managed by family caregivers that often face the "caregiver burden". This study aimed to understand whether a multidisciplinary theoretical-practical training course could influence the burden, health literacy and needs of caregivers. Seventy-six familial caregivers were asked to complete the Caregiver Burden Inventory-CBI, Caregiver Needs Assessment-CNA, and Health Literacy Questionnaire-HLQ, before and after the course. A significant decrease in CBI and an increase of CNA were observed. However, a significantly higher rate of CBI decrease and a lower increase of CNA were detected in the neurological compared to the oncological group (p = 0.001). Moreover, the ability of the participants to look for and find health information significantly improved. The course contrasted caregivers' burden, increased their search for health information, and revealed their requiring of training and emotional and social support. Caregiver education plays a pivotal role in the management of chronic patients, enhancing the quality of life of both patients and caregivers. Highlights • Caregivers' ability to care for chronic patients can affect patients' outcomes. • Caregivers' needs assessment and education are often neglected in healthcare. • A training course positively influenced caregivers' burden, health literacy and needs. • Caregivers' education is fundamental for the management of chronic patients.
Different perspectives on dementia, held by people with dementia, carers and professionals working in helping service industries, were examined in 111 interviews across Australia in 2017 to add a recipients' view on what public health campaigning should address. Contrasts were found between the priorities of the different perspectives, plus a common feeling that dementia should become a normal part of social life. Rather than reflecting stigmatising behaviour, all groups expressed a need for knowledge on how to communicate and interact with people with dementia. In contrast to current campaigns, information on prevention and health-care systems were a low priority.
The Global Carework Summit, organised by the Carework Network and hosted by the University of Massachusetts Lowell’s Center on Women and Work, brought together more than 150 attendees from 25 countries at the University of Massachusetts Lowell (UMass Lowell) in the USA during 1–3 June 2017. The Carework Network, formed almost 20 years ago by a small group of sociologists studying care, is an all-volunteer, international organisation of researchers, policymakers and advocates involved in various domains of care work. Although it is primarily based in the social sciences, it welcomes members from all academic disciplines and advocacy organisations with an interest in the study of care and care work.
This paper explored the support needs of family caregivers of people living with a mental illness in Iran. This descriptive study focused on the experiences of 20 family caregivers as well as the views of 29 professional support workers through individual face-to-face interviews. From these interviews three key themes emerged in regards to the care needs of family caregivers: (i) social support; (ii) emotional support; and (iii) safety and security. These themes highlighted the complex role of caring for a family member with a mental illness and the emotional, social and economic challenges that these caregivers experienced as a result. Iranian caregivers garnered support not only from other family members but also from neighbors and religious leaders but lacked the much needed respite care found in western countries. This research study highlighted the importance of ensuring that the caregivers themselves receive appropriate and adequate support to fulfill their caregiving role.
The prevalence of dementia will continue to increase with the ageing of the population. Many people living with dementia will reach a stage where surrogate decision-makers-mostly family carers-will need to make a range of decisions on their behalf. The aim of this study was to learn from surrogate decision-makers how they can be most effectively supported in this role. The study employed a qualitative design using semi-structured face-to-face or telephone interviews with a purposive sample of 34 surrogate decision-makers of people living with dementia. Transcripts of participant interviews were reviewed using a thematic approach to analysis. Four main themes were identified from this analysis: needing greater community awareness of dementia and its impact; intervening early in cognitive decline; relying on health professionals for ongoing support; and seeking and using support from wherever is relevant for each person. Based on this analysis and a review of the literature, we propose a wholistic set of recommendations for the support of surrogate decision-makers. Healthcare professionals need to help family carers understand the likely trajectory of dementia, including the significance of surrogate decision-making. They can support the person living with dementia and their surrogates to undertake advance care planning and they can act as empathic guides during this process. Health and community care organisations need to provide a "key worker" model wherever possible so that the person living with dementia and their surrogate decision-maker do not have to seek support from multiple staff members or organisations. Carer support programmes can routinely include information and resources about surrogate decision-making. Community and government organisations can help people prepare for the possibility of becoming surrogate decision-makers by promoting a greater public awareness and understanding of both dementia and advance care planning.
BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable lung disease whose intrusive symptoms rob patients of their quality of life. Patients with IPF rely on their caregivers for support and assistance in amounts that vary according to patients' individual circumstances and disease severity. Knowledgeable and well-informed patients and caregivers are best suited to deal with life-altering conditions like IPF. METHODS: We conducted twohour-long focus groups with 13 patients with IPF and four caregivers of patients with IPF to better understand their informational needs and in what format such information should be delivered. RESULTS: Patients discussed the challenges IPF creates in their daily lives. They wanted information on how to live well despite having IPF, practical information on how they could remain active and travel and how they could preserve their quality of life despite living with a life-threatening disease like IPF. Caregivers wanted information on the general aspects of IPF, because it would help them understand what patients were going through. They also wanted specific information on how to give care to a patient with IPF, even when physical care may not be needed (as in earlier phases of the disease). Patients and caregivers both needed efficient information delivery from trustworthy sources, including the healthcare team involved in their care. They considered both spoken and written information valuable, and ease of access was critical. CONCLUSION: This study provides valuable insight regarding the informational needs of IPF patients and their caregivers. It is hoped that identifying or creating sources of this information, and insuring that patients and caregivers have access to it, will improve well-being for patients with IPF and their caregivers.
Respite services play an important role in supporting older adults and their carers. When an older person is unable to fully represent themselves, provision of respite care relies on effective information-sharing between carers and respite staff. This study aimed to explore, from carers' perspectives, the scope, quality and fit of information-sharing between carers, older people and respite services. An explorative, cross-sectional qualitative study involving a purposive sample of 24 carers, recruited via carer support groups and community groups in voluntary organisations, was undertaken in North East Scotland. Data were collected from August 2013 to September 2014, with participants taking part in a focus group or individual interview. Data were analysed systematically using the Framework Approach. The multiple accounts elicited from carers identified how barriers and facilitators to information-sharing with respite services changed over time across three temporal phases: 'Reaching a point', 'Trying it out' and 'Settled in'. Proactive information-sharing about accessibility and eligibility for respite care, and assessment of carers' needs in their own right, were initially important; as carers and older people moved on to try services out, time and space to develop mutual understandings and negotiate care arrangements came to the fore; then, once shared expectations had been established, carers' chief concerns were around continuity of care and maintaining good interpersonal relationships. The three temporal phases also impacted on which modes of information-sharing were available to, and worked best for, carers as well as on carers' perceptions of how information and communication technologies should be utilised. This study highlights the need for respite staff to take proactive, flexible approaches to working with carers and to make ongoing efforts to engage with carers, and older people, throughout the months and years of them utilising respite services. Information and communication technologies have potential to enhance information-sharing but traditional approaches will remain important.
BACKGROUND: As the population is aging, the number of persons living with multiple chronic conditions (MCC) is expected to increase. This review seeks to answer two research questions from the perspectives of older adults with MCC, their caregivers and their health care providers (HCPs): 1) What are the health and social care needs of community-dwelling older adults with MCC and their caregivers? and 2) How do social and structural determinants of health impact these health and social care needs? METHODS: We conducted a scoping review guided by a refinement of the Arksey & O'Malley framework. Articles were included if participants were 55 years or older and have at least two chronic conditions. We searched seven electronic databases. The data were summarized using thematic analysis. RESULTS: 36 studies were included in this review: 28 studies included participants with MCC; 12 studies included HCPs; five studies included caregivers. The quality of the studies ranged from moderate to good. Five main areas of needs were identified: need for information; coordination of services and supports; preventive, maintenance and restorative strategies; training for older adults, caregivers and HCPs to help manage the older adults' complex conditions; and the need for person-centred approaches. Structural and social determinants of health such as socioeconomic status, education and access influenced the needs of older adults with MCC. CONCLUSION: The review highlights that most of the needs of older adults with MCC focus on lack of access to information and coordination of care. The main structural and social determinants that influenced older adults' needs were their level of education/health literacy and their socioeconomic status. [Abstract]
Background: Approaching end of life is often a time of vulnerability; this is particularly so for people with dementia and their families where loss of capacity and the ability to communicate, make assessment and shared decision-making difficult. Research has consistently shown that improvements in care and services are required to support better quality and more person-centred care for people with dementia towards and at end of life. However, the views of people with dementia about what factors contribute to high-quality care at this time are a neglected area. Aim: The aim of this study was to identify the aspects of end-of-life care for people with dementia that are most important to them and their carers. Design: Q-methodology, a mixed method combining qualitative and quantitative techniques to study subjectivity, was used to identify the views of people with mild dementia, their family carers and bereaved carers on end-of-life care for people with dementia. Fifty-seven participants were included in the study. Results: Four distinct views were identified: family involvement, living in the present, pragmatic expectations and autonomy and individuality. Some areas of consensus across all views included compassionate care, decisions being made by healthcare professionals and information availability when making decisions. Conclusion: Our findings reveal several different views on what is important about end-of-life care for people with dementia; therefore, a ‘one-size-fits-all’ approach to care is unlikely to be most appropriate. Notwithstanding the differing viewpoints could provide a framework for service providers and commissioners for future care.
In the US today, there are more than 32 million unpaid family caregivers providing complex care to a family member in the home. In 2012, American Association of Retired Persons (AARP) released the results of Home Alone: Family Caregivers Providing Complex Chronic Care (http://www.aarp.org/content/dam/aarp/research/public_policy_institute/health/home-alone-family-caregivers-providing-complex-chronic-care-rev-AARP-ppi-health.pdf). The study, conducted by the AARP Public Policy Institute and the United Hospital Fund, was a nationally representative population-based online survey of 1677 family caregivers to determine the medical/nursing tasks they performed. Study findings challenged the notion of family caregiving as limited to personal care, such as bathing and dressing, and assistance with household chores, shopping, and paying bills. Here, Fulton talks about caregiver's lack of knowledge in home and post-op care.
Hospitalisation of a parent with acute mental health problems impacts the consumer, their extended family/carers and children. Mental health nurses are at the forefront of promoting recovery for consumers in an acute inpatient setting. Recovery-oriented care can include provision of family-focused care which supports recovery of the parent-consumer and their family members and contributes to prevention of intergenerational mental illness. The aim of this narrative literature review was to explore existing knowledge regarding the experiences, care and support needs of parent-consumers, their family members/carers and children during the parent's acute mental health hospitalisation. It also aims to explore existing knowledge about the practices of mental health nurses providing care to this consumer group, to inform future healthcare practice and strengthen parent, child and family outcomes. Nineteen published studies addressed the review questions. In the context of hospitalisation, the majority of research regarding parenting with a mental illness is focused on mothers. Parents reported experiencing stigma during their hospitalisation. Separation from children was a concern for parents and their extended family, but admission provided an opportunity for the parent to receive treatment and for the family to receive support. Mental health nurses did not always identify parental status on admission. When parental status was identified, nurses reported issues regarding logistics and practicalities of using family rooms, children visiting the unit, and their own professional knowledge and organisational support regarding familyfocused care. Implications for practice are identified, highlighting how mental health nurses can develop their practice to support the recovery of parent-consumers.
Around 50% of people with multiple sclerosis (MS) experience neurogenic bowel dysfunction (constipation and/or faecal incontinence), reducing quality of life and increasing carer burden. No previous qualitative studies have explored the experiences of bowel problems in people with MS, or the views of their family carers. This study sought to understand ‘what it is like’ to live with bowel dysfunction and the impact this has on people with MS and carers. Using exploratory qualitative methods, 47 semi-structured interviews were conducted with participants recruited from specialist hospital clinics and community sources using purposive and chain-referral sampling. Data were analysed using a pragmatic inductive-deductive method. Participants identified multiple psychological, physical and social impacts of bowel dysfunction. Health care professional support ranged from empathy and appropriate onward referral, to lack of interest or not referring to appropriate services. Participants want bowel issues to be discussed more openly, with clinicians instigating a discussion early after MS diagnosis and repeating enquiries regularly. Bowel dysfunction impacts on the lives of people with MS and their carers; their experience with care services is often unsatisfactory. Understanding patient and carer preferences about the management of bowel dysfunction can inform clinical care and referral pathways.
BACKGROUND: Previous research into improving patient safety has emphasised the importance of responding to and learning from concerns raised by service users and carers. Expertise gained by the experiences of service users and their carers has also been seen as a potential resource to improve patient safety. We know little about the ease of raising concerns within mental health services, and the potential benefits of involving service users and carers in safety interventions. This study aimed to explore service user and carer perceptions of raising safety concerns, and service user, carer and health professional views on the potential for service user and carer involvement in safety interventions. METHODS: UK service users, carers and health professionals (n=185) were recruited via social media to a cross-sectional survey focussed on raising concerns about safety issues and views on potential service user and carer participation in safety interventions. Data were analysed using descriptive statistics, and free text responses were coded into categories. RESULTS: The sample of 185 participants included 90 health professionals, 77 service users and 18 carers. Seventy seven percent of service users and carers reported finding it very difficult or difficult to raise concerns. Their most frequently cited barriers to raising concerns were: services did not listen; concerns about repercussions; and the process of raising concerns, especially while experiencing mental ill health. There was universal support from health professionals for service user and carer involvement in safety interventions and over half the service users and carers supported involvement, primarily due to their expertise from experience. CONCLUSIONS: Mental health service users and carers experience difficulties in raising safety concerns meaning that potentially useful information is being missed. All the health professionals and the majority of service users and carers saw potential for service users and carer involvement in interventions to improve safety, to ensure their experiences are taken into consideration. The results provide guidance for future research about the most effective ways of ensuring that concerns about safety can be both raised and responded to, and how service user and carer involvement in improving safety in mental health care can be further developed.
Background: There are an increasing number of people living with dementia, as well as an expectation that care decisions are made collaboratively with those with the disease entering the end stage and their families. This has increased the burden on family carers. Aim: To explore the evidence on the decisional support needs of informal carers of people with end-stage dementia. Design: A rapid scoping review was undertaken of peer-reviewed publications between 2000 and 2016, which included all health-care settings and the person's own home. Six databases were searched (CINAHL, MEDLINE, EMBASE, BNI, PSYCHINFO, Web of Science) and all papers meeting the inclusion criteria were read. A thematic analysis was undertaken of the selected papers using a pragmatic approach based on how the papers addressed the research question. Results: Sixty papers were individually appraised, with 40 being included in the review. Of these papers, 11 were literature reviews and 29 were primary studies. The themes identified were: the influential factors in carer decision making, the scope of carer decision making, the conflicts/problems in carer decision making, the resources carers need to make decisions and the impact of carer decision making. Conclusion: To date, the emphasis in dementia care has been on living well with dementia, but realistically there is a need to plan for a 'good death' that includes the person and their carers. There is a need to support people with dementia and their carers to make an advance care plan, while the person with dementia can take part in the decision-making process. This proactive intervention is likely to reduce carer decision burden at end of life and facilitate achievement of death in the person's preferred place, which is usually the home or care home.
Objectives: To investigate the characteristics of the caregiving experience according to age at onset of dementia to adapt support programmes. Method: Fifty-seven spouse caregivers of persons with early-onset dementia (PEOD) and 93 spouse caregivers of persons with late-onset dementia (PLOD) participated. The characteristics of the caregiving experience were assessed using questionnaires. The authors compared the two groups according to age at onset of the disease using a multivariate test, Pillai's Trace test. Results: The analysis showed that there were similarities and differences between the two groups of spouse caregivers. All spouse caregivers were confident in their caregiving role and fairly well prepared for future needs and reported mild depressive and anxious symptoms. However, they lacked informal support, had low confidence in requesting respite care and reported effects on their health. Compared to spouse caregivers of PLOD, spouse caregivers of PEOD had more severe perceptions of the cognitive disorders of persons with dementia (PWD) and had a better sense of preparedness and knowledge of services. Spouse caregivers of PLOD were more confident in their ability to control disturbing thoughts. Conclusion: The results suggest that programmes should provide information on support networks to improve preparedness for spouse caregivers of PLOD as well as emphasizing positive coping strategies for caregivers of PEOD to maintain good-quality relationships with PWD, which influences the perception of the symptoms. For both groups, family relationships should be considered.
Theories of social justice have identified the revaluation of caregiving work as a global challenge. Still, struggles for recognition are shaped by the specific cultural and institutional contexts in which they emerge. This article explores struggles for the recognition of caregiving work in Spanish eldercare, focusing on advocacy for family carers and for domestic workers. Drawing on interviews, findings reveal that domestic workers' needs are politicised to a greater extent than family carers' needs; empowerment and claims for workers' rights contrast with notions of self-care and mutual support. While the struggles are differentiated, the undervaluation of eldercare is a common theme.
Background: The number of people living with dementia (PWD) is increasing worldwide, corresponding with an increasing number of caregivers for PWD. This study aims to identify and describe the literature surrounding the needs of caregivers of PWD and the solutions identified to meet these needs. Method: A literature search was performed in: PsycInfo, Medline, CINAHL, SCIELO and LILACS, January 2007–January 2018. Two independent reviewers evaluated 1,661 abstracts, and full-text screening was subsequently performed for 55 articles. The scoping review consisted of 31 studies, which were evaluated according to sociodemographic characteristics, methodological approach, and caregiver’s experiences, realities, and needs. To help extract and organize reported caregiver needs, we used the C.A.R.E. Tool as a guiding framework. Results: Thirty-one studies were identified. The most common needs were related to personal health (58% emotional health; 32% physical health) and receiving help from others (55%). Solutions from the articles reviewed primarily concerned information gaps (55%) and the education/learning needs of caregivers (52%). Conclusion: This review identified the needs of caregivers of PWD. Caregivers’ personal health emerged as a key area of need, while provision of information was identified as a key area of support. Future studies should explore the changes that occur in needs over the caregiving trajectory and consider comparing caregivers’ needs across different countries.
The role of carers in supporting people with HIV is largely hidden in Western countries in the contemporary era of antiretroviral treatments. Little is known about their needs. A scoping review was undertaken to describe the research available on the needs of this group and identify gaps in existing knowledge. Findings reveal that carers of people with HIV have similar needs to other carers but are currently mostly invisible to support services. The article suggests that the discourse of independence underpinning the new HIV treatment era may be difficult for carers to 'disrupt' by naming what they do as 'care'.
AIMS AND OBJECTIVES: To identify and synthesise the needs of care partners of older people living at home with assistance from home care services., BACKGROUND: "Ageing in place" is a promoted concept where care partners and home care services play significant roles. Identifying the needs of care partners and finding systematic ways of meeting them can help care partners to cope with their role., DESIGN/METHODS: This study is based on the PRISMA reporting guidelines. The systematic review of qualitative and quantitative studies was guided by the Joanna Briggs Institute methodology., RESULTS: In total, 16 studies were included in the review, eleven qualitative and five quantitative. Three main categories were revealed in the analysis: the need for quality interaction, the need for a shared approach to care and the need to feel empowered., CONCLUSION: Care partners of older people have several, continuously unmet needs. A person-centred perspective can contribute new understandings of how to meet these needs. A knowledge gap has been identified regarding the needs of care partners of older people with mental health problems. There is a need to develop a tool for systematic collaboration between home care services and care partners, so that the identified needs can be met in a more thorough, systematic and person-centred way., RELEVANCE TO CLINICAL PRACTICE: The carers in home care services need competence to identify and meet the needs of care partners. The implementation of person-centred values in home care services can contribute to meet the needs of care partners to a greater extent than today. Future research on the needs of care partners of older people with mental health problems needs to be undertaken.
Background: As with many other populations, abuse of older adults is a growing problem across the Africa Diaspora. Modernization and urbanization are eroding the traditional values of respect for older adults. Also, older adults living in environments with limited social and economic resources, and having no means of economic support create a recipe for elder abuse and neglect. Methods: This article reviews the current literature on the epidemiology, risk factors, and interventions used for elder abuse across the African Diaspora. Results: Reports of elder abuse range from 24.9% to 81.1% across the Diaspora. Risk factors include cognitive and physical impairment, social isolation, lack of resources and widowhood. Conclusion: Community-based programs using the unique social networks of older populations of African descent can provide a venue to improve caregiver training and support, reinforce traditional filial and informal caregiving practices, increase the utilization of available governmental and institutional.
Background Clinicians, researchers and politicians are seeking to better assess caregiver's needs. Challenges exist in broadly implementing this so as to provide appropriate support. The aim of this review was to compile self-administered instruments for assessment of caregiver's needs that are deemed to be scientifically robust. Methods The Medline database was searched for publications reporting self-administered instruments assessing caregiver's needs with acceptable psychometric properties. These instruments were analyzed in terms of the development context, target population, concept, purpose, structure, content and psychometric properties. The dimensions of the needs were listed and categorized. Results A total of nine self-administered instruments were analyzed. They averaged 32 items, they were specifically developed for a targeted subpopulation of caregivers and dedicated to epidemiological research. Response devices were based on Likert scales. The main dimensions of the needs identified were 'Health and Care', 'Psychological - Emotional Support', 'Information - Knowledge', 'Social Life - Work - Finance'. None was specifically geared toward caregivers for the elderly, children or teenagers. In the absence of transcultural validation, no instrument was directly usable in Europe. Conclusions Assessing caregivers' needs is a key part in providing caregivers with appropriate support. The development of self-administered instruments constitutes a complex field that is still underexplored at the international level; strict specifications with psychometric validation are essential. To be efficient, the instrument should be integrated in a larger process including: upstream, recognition, identification and assessment of the overall situation of the caregiver; and downstream, guidance, establishment and follow-up of a suitable action plan.
Background: Globally, most care for people with life-limiting illnesses is provided by informal caregivers. Identifying characteristics of caregivers that may have unmet needs and negative outcomes can help provide better support to facilitate adjustment. Aim: The authors compared characteristics, expressed unmet needs and outcomes for spousal caregivers, with other caregivers at the end of life, by gender and age. Design: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey wherein respondents are asked about end-of-life care. Setting/participants: Participants were aged over 15 years, resided in households in South Australia and had someone close to them die from a terminal illness in the last 5 years. Results: Of the 1540 respondents who provided hands-on care for someone close at the end of life, 155 were widows/widowers. Bereaved spousal caregivers were more likely to be older, female, better educated, have lower incomes, less full-time work, English as second language, sought help with grief and provided more day-to-day care for longer periods. Spousal caregivers were less likely to be willing to take on caregiving again, less able to ‘move on’ with life and needed greater emotional support and information about illness and services. The only difference between widows and widowers was older age of spouse in women. Younger spousal caregivers perceived greater unmet emotional needs and were significantly less likely to be able to ‘move on’. Conclusion: Spousal caregivers are different from other caregivers, with more intense needs that are not fully met. These have implications for bereavement, health and social services.
Spousal caregivers of persons with dementia often have difficulty engaging persons with dementia in leisure activities. This qualitative descriptive study identifies how caregivers perceive their spouses’ participation in leisure activities since dementia onset and the professional guidance caregivers require to increase persons with dementia participation in shared leisure activities. Nine spousal caregivers from a hospital-based caregiver intervention attended one of three focus groups. Using symbolic interactionism and selective optimisation with compensation theory as guiding frameworks, thematic content analysis was performed. Three major themes were identified: Recognising and acknowledging changes, Making sense of changes and conflicts, and Embracing changes and forging ahead. Findings can be used by healthcare providers to better understand caregivers’ needs for engaging persons with dementia in shared leisure activities, and inform development of feedback protocols to enhance caregiver interventions.
Care of the elderly with dementia represents one of the major challenges for the modern society worldwide. The burden of dementia care often falls on the family members, entailing heavy psychosocial and economic consequences. The aim of this study was to evaluate the caregiver's perspective concerning the support for disease management on behalf of the physicians and the local Sicilian administrations (Italy), and the burden of care and effects on their lifestyle, to propose new prevention strategies and service for managing dementia and caregiver's burden. Fifty-nine caregivers of Italian elderly people with dementia (mean age, 73; age range: 63-83) were interviewed, and 55 of them completed an ad hoc self-report questionnaire composed of 54 multiple-choice questions. Our findings suggest that caregivers need more information on the disease's management, as well as on how to deal with the stress due to the disease burden. Moreover, a negative perception about the services offered from the local administration emerged. Assistive technology (AT) could be useful in promoting interaction between general practitioners and specialized centers for diagnosis, pharmacological and psychosocial treatments, and in saving costs. Moreover, case manager could follow patients and support family members within the care pathway, besides collecting and sharing information among the different health professionals involved. Further studies should be aimed at investigating whether AT and/or the use of specific educational strategies could be the right approach for meeting the needs of families living with dementia.
Background Family caregivers of people with dementia have significant unmet health needs. There is a lack of research that differentiates between the needs that are specifically relevant to partner and offspring caregivers. Objective The aim of this study was to examine the health needs of partner and offspring caregivers of older people with dementia, including the barriers they experience in meeting their needs. Method Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analysed using thematic analysis. Results Five themes were identified within the data. The first theme represents caregivers' overall assessment and perception of their health needs. The remaining four themes represent the most important aspects of caregivers' health needs; mental health, emotional support and social relationships, healthy diet and exercise, and personal time. While these themes were similar for offspring and partner caregivers, the specific needs and barriers within these areas were different. A prominent barrier for partner caregivers was that they had difficulty in acknowledging their needs. Despite this, partner caregivers demonstrated unmet emotional support needs, as they no longer had emotional support from their partner with dementia. They also had an unmet need for time away from the care-giving role, yet they were reluctant to leave the person with dementia. Offspring caregivers' unmet health needs were easily identified and were focused on their unmet mental health needs and feeling socially isolated. These unmet mental health and social support needs were related to their unmet health needs in other areas such as exercise, diet and having time to themselves. Conclusion Caregivers have significant unmet needs and these are often complex, multidimensional, and they often differ between partner and offspring caregivers. Gaining a more detailed understanding of the needs and barriers that are particularly relevant to either partner or offspring caregivers will assist in the development of interventions that are tailored to the unique needs of caregivers.
Objectives To explore the associations between stress, sleep disturbances, fatigue severity and social support among primary family caregivers in intensive care units during the early period of ICU hospitalisation.Design Cross-sectional, descriptive correlational study.Setting Intensive Care Units in a teaching hospital in Taiwan.Main outcome measures Perceived stress (Impact of Events Scale-Revised), sleep disturbances (General Sleep Disturbance Scale), fatigue severity (Lee’s Fatigue Scale), social support (Norbeck Social Support Questionnaire) and one open-ended question.Results The primary family caregivers (N = 87) were distressed and experienced poor sleep quality and fatigue during the early period of ICU hospitalisation. Primary family caregivers have various social support needs but being updated on the patients’ prognosis was at the top of the list. Perceived ICU hospitalisation stress was the only significant predictor for fatigue while age along with perceived event stress were the significant predictors for sleep disturbances.Conclusion Stress-coping interventions are needed to reduce stress-related symptoms for the primary family caregivers. Social supports did not buffer stress in this study, which calls for further research to explore the culture variance and quality of social support.
Background: A growing number of studies are emphasizing the importance of positive and negative appraisals of caregiving and the utilization of social resources to buffer the negative effects of caring for persons with dementia. By assessing the roles of unmet needs and formal support, this study tested a hypothesized model for Korean family caregivers’ satisfaction and burden in providing care for persons with dementia. Methods: The stress process model and a two-factor model were used as the conceptual framework for this study. Data for 320 family caregivers from a large cross-sectional survey, the Seoul Dementia Management study, were analyzed using structural equation modeling. In the hypothesized model, the exogenous variables were patient symptoms, including cognitive impairment, behavioral problems, and dependency on others to help with activities of daily living and with instrumental activities of daily living. The endogenous variables were the caregiver's perception of the unmet needs of the patient, formal support, caregiving satisfaction, and caregiving burden. Results: The adjusted model explained the mediating effect of unmet needs on the relationship between patient symptoms or formal support and caregiving satisfaction. Formal support also had a mediating effect on the relationship between patient symptoms and unmet needs. Patient symptoms and caregiving satisfaction had a significant direct effect on caregiving burden. Conclusion: The level of unmet needs of persons with dementia and their family caregivers must be considered in the development of support programs focused on improving caregiving satisfaction.
Older family carers of people with dementia provide a substantial amount of care for people with dementia in the UK. Caregiving can be stressful and burdensome for these individuals, who are also experiencing psychological and physical changes resulting from their own ageing process. However, little is known about what impacts their quality of life, how this can be improved and what we should prioritise. This brief report asks one simple question to older family carers of people living with dementia – “What would most help improve your quality of life as a carer?” Qualitative data were collected from 150 carers who completed an anonymous paper survey during the development and validation of a quality of life tool for use with this population (DQoL-OC). Participants were individuals aged 60 and over and were providing care for a family member with dementia at home in the UK. Carers were recruited from a variety of voluntary organizations, community-based carers’ groups, health services and via online forums. A thematic approach was used to analyse the carers’ comments and three main overarching themes were identified. The quality of life of older family carers can be enhanced by having more time away from caregiving, accessing health and social services that are dementia friendly and by having economic support. Future care, policies and research should aim to address these key areas in order to promote better quality of life for older carers of people with dementia. Further implications for practice, policy and research are discussed.
Purpose Micro-finance self-help groups empower caregivers to indulge in productive activities based on the local availability of resources to reduce their financial burden. The purpose of this paper is to assess the need for and feasibility of initiating micro-finance groups for the caregivers of persons with mental disability in a rural socio-economically backward community of Karnataka, India. Design/methodology/approach The design of the study was a cross-sectional survey, with mixed methodology design out of the eight localities where the Mental Health Public Health Centres (PHC) were running successfully in Konandur area, Thirthahalli Taluk, Karnataka, one PHC was selected using simple Random Sampling Design and a 5 kms radius from Konandur town was selected as the area of the survey (190 households). During door-to-door survey, if the family indicated that a particular member is mentally unwell, the GHQ-5 and Symptoms and Others checklist were administered on him/her and the women caregiver was interviewed using qualitative needs assessment schedule and Perceived Social Support Scale. Findings Ten persons/households with mental illness (5.26 per cent) were identified in the community. Themes of financial needs, capacity of the caregiver, community resources, need for the microfinance self-help groups, informational needs, social support, burn out, and stigma elicited in the interview were depicted in the form of a conceptual framework to understand the inter-connectedness between the various themes. Research limitations/implications This study is the first initiative in the field of micro-finance self-help groups for the persons with mental illness and families. The design of the study was a cross-sectional survey, which is found globally to be the most suited in conducting prevalence studies, as it provides accurate results for future studies as well as it is the first step to obtain accurate baseline values to later plan a prospective follow up study. The study used mixed methodology design. Though the sample size was small, the information collected from the participants in qualitative and quantitative method was triangulated and conceptual frameworks were developed. As this study is one of the first of its kind in the country, the results of this study from the stated sample can be considered as an important pilot for future longitudinal and cross-sectional studies to be planned in the community. Originality/value There is hardly any scientific literature which talks about the need for Micro-finance self-help groups for Persons with Disability, especially with person with mental disability. In order to initiate any Micro-finance SHG activities, it is essential to first undertake the need for and feasibility of initiating such micro-finance group activities in any given area. This study will be an important milestone in initiating any self-help group activity for caregivers of persons with mental disability, as it would help us understand the financial needs of the community, based on which a draft proposal to initiate micro-finance self-help group activities can be drawn up.
This text is one of the first comprehensive resources on understanding and working with families in the intensive care unit. The text provides a conceptual overview of the Family ICU Syndrome, a constellation of physical morbidity, psychopathology, cognitive deficits, and conflict. Outlining its mechanisms, the book presents a guide to combating the syndrome with an interdisciplinary team. The text represents the full array of the interdisciplinary team by also spotlighting administrative considerations for health care management and approaches to training different members of the health care team. Family voices are featured prominently in the text as well. The book also addresses the complete trajectory of needs of care, including survivorship and end-of-life care. Written by experts in the field, Families in the Intensive Care Unit: A Guide to Understanding, Engaging and Supporting at the Bedside is a state-of-the-art reference for all clinicians who work with families in the ICU.
Background: Providing effective support to the increasing number of people with dementia to remain at home is a challenge for families, health professionals, service providers, and governments worldwide. The aim of this paper was to summarize and disseminate the current international research evidence on the met and unmet needs of people with dementia and their carers, to inform researchers and policy-makers. Method: A scoping review methodology was used to guide a search of studies published between 2004 and 2015 using specified search terms; 27 studies relevant to the aim were included. A constant comparison approach was used to thematically analyze the data. Results: Holistic needs encompassing basic human survival, medical, financial, and social needs were experienced by people with dementia and carers, regardless of country or methodology used to collect data. A gap was identified frequently between what was needed and the supports that were received; this gap encompassed quantity, quality, and flexibility of services underpinned by service delivery models. Conclusion: The needs of people with dementia and their carers were diverse and not always effectively met by the services designed to support them. Recommendations are offered to service providers, policy-makers, and researchers to support more effective service provision tailored to meet the needs of people with dementia and their carers while they are living in the community.
Background: The family often takes care of an elderly person who suddenly becomes dependent. This greatly affects different aspects of the caregivers’ lives. The aim of this study is to explore the initial experiences, during the first year of care, of persons who suddenly become caregivers for elderly dependent relatives. Methods: A search in CINAHL, PsycINFO, WOS, Medline, and Scopus and a metasynthesis of qualitative research were conducted including 19 articles. Results: Three categories were developed to explain the process of becoming a caregiver ‘taking on the role’ (life changes, uncertainty and confusion, and acceptance or resistance); ‘beginning to realise’ (new needs, impact, and appraisal); and ‘implementing strategies’ (seeking help and self-learning, reordering family and social relationships, solving problems, and devising strategies to decrease negative emotions and stress). Conclusions: The synthesis provides a comprehensive understanding of the experience of becoming a caregiver in order to help health-care professionals to adapt care plans to this situation.
Cities across England will see a growing number of informal carers as the population ages, many of whom do not begin this role equipped with the knowledge they need to access social care services and supports. One of the more significant changes brought by passage of the Care Act of 2014 is local governments’ increased responsibility to improve the provision of information and advice on social care to informal carers, long recognized as a policy priority. To better understand where improvements can be made on a local level in order to achieve the goals laid out in the Care Act, this study considers carers’ experiences accessing information and advice on social care services and supports in a city with a population of over 250,000 in the south of England. This was done through the collection of semi-structure qualitative interviews with 11 carers to people aged 65 and older from April 2015 to July 2015. Thematic analysis of interviews revealed a tension between carers’ varying levels of knowledge and experience with the social care system and information services’ one-size-fits-all approach to providing information. Findings suggest local governments should focus on creating information services that more actively reach out to carers, provide greater guidance to those carers who need it, and work to flexibly meet informal carers information needs, acknowledging that some carers will be less familiar than others with aspects of the social care system.
As the incidence of dementia is increasing, so health and social care professionals are facing a challenge to deliver good quality end-of-life care. Historically, it is not an area that has been afforded much attention until recently, but interventions such as Admiral Nursing are well placed and equipped to work with and support families at this time. It is essential, in supporting a family to live as well as they can following a diagnosis of dementia, to facilitate dying well with or from dementia. This article uses a case study approach, combined with professional reflective practice, to explore the importance of good communication in the last few months, weeks and days of life in a family affected by dementia.
Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL). Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses. Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both. Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support QOL. The perspectives of people with dementia are informative when identifying needs.
Purpose Measure Yourself Concerns and Wellbeing (MYCaW) is a validated person-centred measure of the concerns and wellbeing of people affected by cancer. Research suggests that the concerns of informal caregivers (ICs) are as complex and severely rated as people with cancer, yet MYCaW has only been used to represent cancer patients’ concerns and wellbeing. This paper reports on the development of a new qualitative coding framework for MYCaW to capture the concerns of ICs, to better understand the needs of this group. Methods This multicentred study involved collection of data from ICs receiving support from two UK cancer support charities (Penny Brohn UK and Cavendish Cancer Care). Qualitative codes were developed through a detailed thematic analysis of ICs’ stated concerns. Results Thematic analysis of IC questionnaire data identified key themes which were translated into a coding framework with two overarching sections (1) ‘informal caregiver concerns for self’ and (2) ‘informal caregiver concerns for the person with cancer’. Supercategories with specific accompanying codes were developed for each section. Two further rounds of framework testing across different cohorts allowed for iterative development and refinement of the framework content. Conclusions This is the first person-centred tool specifically designed for capturing IC’s concerns through their own words. This coding framework will allow for IC data to be analysed using a rigorous and reproducible method, and therefore reported in a standardised way. This may also be of interest to those exploring the needs of ICs of people in other situations.
Carers have a vital role in end of life care in all settings. They are essential in enabling people to live at home at the end of their lives. Carers give and receive care, and have a range of support needs related to this complex role. This article explores the context of caring at the end of life and considers the experience of carers, in particular those who have a non-professional and unpaid relationship with someone who is at the end of life, and the support they require.
Objectives Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course. Design In an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role. Interviews took place on three occasions at 4-month to 6-month intervals. Demographic, burden and quality of life data were collected, in addition to the open-ended responses. We carried out descriptive statistical analysis and thematic analysis of qualitative data. Setting and participants Home interviews at baseline (n=81) and on two further occasions (n=56, n=41) with informal caregivers of people with ALS attending the National ALS/MND Clinic at Beaumont Hospital, Dublin, Ireland. Results The majority of caregivers were family members. Hours of care provided and caregiver burden increased across the interview series. Thematic analysis identified what would help them in their role, and needs related to external support and services, psychological-emotional factors, patient-related behaviours, a cure and ‘nothing’. Themes were interconnected and their prevalence varied across the interview time points. Conclusion This study has shown the consistency and adaptation in what caregivers identified as helpful in their role, across 12–18 months of a caregiving journey. Support needs are clearly defined, and change with time and the course of caregiving. Caregivers need support from family, friends and healthcare professionals in managing their tasks and the emotional demands of caregiving. Identifying the specific needs of informal caregivers should enable health professionals to provide tailored supportive interventions.
Introduction Stroke events deeply affect not only the stroke survivor but also often the quality of life and physical and psychological health of the family and friends who care for them. There is a need for further information about the unmet needs of these informal carers in order to develop support services and interventions. The primary objective of this review is to report and synthesise the research describing the unmet needs of carers of stroke survivors. Methods and analysis A systematic review of quantitative and qualitative studies that report on the unmet needs of carers will be conducted. The following databases will be searched for relevant articles: MEDLINE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, EMBASE, Allied and Complementary Medicine Database and Scopus. No publication date constraints will be applied. Studies will be limited to those published in English and conducted among humans. Eligible studies will report on the unmet needs of informal carers of stroke survivors, defined as family members, friends and other unpaid caregivers. Studies which focus on formal, clinical or medical caregivers will be excluded. A narrative synthesis and pooled analysis of the main outcomes will be reported. Ethics and dissemination This review will be submitted to a peer-reviewed journal. Our findings are expected to provide new insights into the unmet needs of stroke survivors’ carers. Knowledge about the unmet needs of carers will inform the development and refinement of interventions and services to address these needs and better support carers of stroke survivors. The findings of this systematic review will be disseminated publicly and in peer-reviewed journals and may be the topic of research presentations. Trial registration number CRD42017067391.
Aims and objectives To examine the relationship between significant others' expected and received knowledge and their background characteristics in three Mediterranean countries (Cyprus, Greece, Spain), all of which deal with economic restrictions, have similar social support systems with the family members acting as family caregivers, and cultural similarities. Background Significant others' role is a key element in the older patients' postoperative recovery. However, people who take care of persons older than 65 years, as persons undergoing arthroplasty, are usually old themselves and need special support. Design Multicentre, descriptive, correlational study. Methods Data were collected preoperatively from 189 and postoperatively from 185 significant others using the Knowledge Expectations and the Received Knowledge of Significant Others Scales during 2010‐2012. Results Approximately one‐fourth of the significant others were older than 65 years. Their knowledge expectations were not adequately addressed in any of the countries they expected to be educated more on biophysiological issues and received the lowest knowledge regarding financial issues. The highest difference between expected and received knowledge was found in Greece and the lowest in Cyprus. Significant others may be less prepared for dealing with situations at home due to the knowledge difference between expected and received knowledge. Conclusions Significant others receive less education comparing to what they expect therefore, they are not prepared for dealing with problematic situations during their old relative's recovery. This is especially important in Mediterranean countries, where family members often provide patient care. Implications for practice As health care is changing towards active participation of patients and family, it is important that nurses provide the education needed, as lower education may lead to poor patient outcomes and higher education may lead to significant others' anxiety. Nurses may keep in mind that older significant others do not report higher knowledge difference, but may have lower expectations.
Objectives: To examine people with dementia and carer preferences for home support attributes in early-stage dementia, building on the paucity of evidence in this area. Method: Preferences from 44 people with dementia and 103 carers, recruited through memory clinics and an online questionnaire, were assessed with a Discrete Choice Experiment survey, with attributes informed by an evidence synthesis and lay consultation. A conditional logit model was used to estimate preference weights for the attributes within a home support ‘package’. Results: The most preferred attributes were support with personal feelings and concerns, provided by a trained counsellor at home (coefficient 0.67, p = <0.001) and information on coping with dementia, provided by an experienced worker at home (coefficient 0.59, p = <0.001). However, for people with dementia, opportunities for social and recreational activities were considered the most important (coefficient 0.48, p = <0.001). Conclusions: These preferences concur with emerging evidence on psychosocial interventions in dementia. Support with personal feelings, information and social engagement are important components. Additionally, knowledge of preferences of people with dementia and their carers can identify other attributes that may be important to effectiveness in ‘living well’ but for which there remains limited evidence.
Purpose: Clinical guidelines emphasise the central role of family members in supporting people with bipolar disorder. However, there has been little focus on the challenges family members face in supporting their relative. This qualitative study explored the challenges of providing support to a relative with bipolar disorder, and how family members attempted to meet these challenges. Factors that helped or hindered their efforts were also explored, including experiences of professional support. Methods: Semi-structured interviews were conducted with 18 family members (partners, parents, adult children, and siblings). Transcripts were analysed using the Framework approach. Results: Participants faced numerous challenges pertaining to the nature of the disorder and specific illness phases, their relative’s responses to their attempts to help, and the limitations of support from healthcare professionals. Although participants were resourceful in managing these challenges, they strongly valued professional input. Six themes were identified: ‘Not knowing: like being in a minefield’, ‘It’s out of my control: sitting waiting for the next thing to happen’, ‘Treading on eggshells’, ‘Picking up on signs’, ‘Times of crisis: between a rock and a hard place’, and ‘I have to make my voice heard’. Conclusions: Family members supporting a relative with bipolar disorder face significant challenges but show considerable resourcefulness in managing them. The findings underline the importance of input from healthcare professionals to help family members effectively support their relative and manage the challenges they face. Professional support should be strengths-based, and tailored to family members’ needs.
Background: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. Methods: Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project “Patient-centred palliative care pathways in advanced cancer and chronic disease” (InSup-C). Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions. Results: On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers’ burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures. Conclusions: Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the ‘unit of care’ and partner in caregiving, to improve their knowledge about, and access to, and the support available.
The aim of this study was to explore the needs of Family Caregivers of people living with mental illness in Kumasi, Ghana. An exploratory research design using a Qualitative approach was employed for the study and one on one interview was used to collect data. A total of 13 participants who were identified as Family Caregivers of mentally ill persons having their rehabilitation in Kumasi were used for the study. Thematic content analysis was used to analyse and interpret the qualitative data. The results indicated that Family Caregivers were in need of medical attention as well as helping hand to assist them in their many physical engagement and adequate sleep and time off to replenish their lost energies to prevent stress. They were also in need of shelter to accommodate their mentally ill relatives as well as social affection. Others were in need of information to gain insight into patient's treatment and condition as well as financial support. Family Caregivers needed support from friends and society in order to psyche them for their task. It is, therefore, necessary that the needs of Family Caregivers are addressed so that they can function accordingly.
Objectives Family caregivers of cancer patients have a vital role in facilitating and sharing information about cancer, revealing a need to develop caregiver health literacy skills to support caregiver communication. The goal of this study was to investigate caregiver print materials and develop and assess a new caregiver communication resource titled A Communication Guide for CaregiversTM. Methods Using a model of six domains of caregiver health literacy skills, print cancer education materials were collected and evaluated for caregiver communication support. A new caregiver communication resource was also developed and assessed by caregivers and healthcare providers. Caregivers reviewed content and assessed utility, relatability, and reading quality. Healthcare providers also assessed whether the material would be understandable and usable for cancer caregivers. Results Only three of the 28 print materials evaluated were written at the recommended sixth grade reading level and only five addressed all six caregiver health literacy skills. Readability scores for A Communication Guide for CaregiversTM were at the sixth grade level, and caregivers reported its contents were relatable, useful, and easy to read. Healthcare providers also rated the material as easy for patient/family members of diverse backgrounds and varying levels of literacy to understand and use. Conclusions Existing print-based caregiver education materials do not address caregivers' health literacy skill needs and are aimed at a highly literate caregiving population. A Communication Guide for CaregiversTM meets health literacy standards and family caregiver and provider communication needs. The findings are relevant for healthcare professionals who provide cancer education.
BACKGROUND: Parents often become the caregivers for their adult children with serious mental illness (SMI) due to the chronic and debilitating course of the illness and shortages in funding for community mental health services and residential placements. OBJECTIVE: To examine parents' management styles when caring for adult children with SMI and parents' perspectives on what type of community-based mental health interventions would support and/or enhance overall family functioning. DESIGN: A qualitative descriptive study using semistructured interviews with parents caring for adult children with SMI. The study was undergirded by Knafl and Deatrick's Family Management Style Framework. RESULTS: Four major themes emerged from the data describing prolonged and difficult phases that parents and the family undergo in caring for an adult child with SMI. CONCLUSIONS: Successful management of these phases must include increasing access to mental health information, mental health screening, early interventions, and violence prevention for adult children and their families.
WHAT IS KNOWN ON THE SUBJECT?: Existing literature provides insight into the general experience of carers of people with a mental illness. Previous studies have found that carers experience a range of emotions when looking after their relatives with a mental illness. However, experiences of carers as they engage with the healthcare system is largely absent from the literature. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This paper identified the experiences of carers when their relatives are experiencing a crisis or acutely unwell. Carers found themselves in the middle between mental health services and their relatives. Strategies employed by carers to ensure their relatives receive adequate care were identified from this study. This paper identified how carers needed to become more assertive in order to receive adequate care for their relatives, and this finding has implications for any future carer education. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: The participants identified the need to work more collaboratively with carers of people with a mental illness as they seek treatment for their relatives in order to achieve better health outcomes for the patients. Improved health service engagement of carers was seen by participants to assist them to better care for their relative. The study also found that there needs to be a clearer definition as to what constitutes mental health crisis and how carers are able to intervene during this period. Services could provide clear information concerning crisis services and in particular triage.
This study explored the caregiving experiences of wives of patients with prostate cancer. Twenty wives revealed those older, educated, or married longer were less burdened by caregiving, but needed more information. Findings contribute new dimensions in caregiving for patients with prostate cancer and their wives.
Rationale: Given the high number of young adults caring for a family member, and the potential for adverse psychosocial outcomes, there is a need for a screening tool, with clinical utility, to identify those most vulnerable to poor outcomes and to aid targeted interventions. Objectives: (i) To determine whether current knowledge from cancer literature regarding young carers is generalisable to chronic conditions and, therefore, whether an existing screening tool could be adapted for this population. (ii) To develop a measure of unmet needs in this population and conduct initial psychometric analysis. Design: This was mixed method interviews in study one informed measure development in study two. Inclusion criteria were as follows: having a parent with a chronic condition and being aged 16-24 years. In study 1, an interpretative phenomenological analysis was conducted on interviews from seven young adults (age range 17-19 years). Study 2 explored factor structure, reliability and validity of the Offspring Chronic Illness Needs Inventory (OCINI). Participants were 73 females and 34 males (mean ages 18.22, SD = 1.16 18.65, SD = 1.25). Main outcome measures OCINI, Depression Anxiety and Stress Scale, and the Adult Carers Quality of Life Scale. Results: Interviews communicated that the impact of their parent's condition went unacknowledged and resulted in psychosocial, support and informational needs. An exploratory principal axis analysis of the OCINI yielded five factors. Significant and positive correlations were found between unmet needs and stress, anxiety, and depression, and inversely with quality of life. Conclusions: The scale has applications in clinical settings where these young people, who are at risk of negative psychological outcomes, may be assessed and unmet needs targeted appropriately. References
Background: To improve perceived value of nutrition support and patient outcomes, the present study aimed to determine the nutrition and food‐related roles, experiences and support needs of female family carers of community‐dwelling malnourished older adults admitted to rehabilitation units in rural New South Wales, Australia, both during admission and following discharge. Methods: Four female family carers of malnourished rehabilitation patients aged ≥65 years were interviewed during their care‐recipients’ rehabilitation admission and again at 2 weeks post‐discharge. The semi‐structured interviews were audiotaped, transcribed and analysed reflecting an interpretative phenomenological approach by three researchers. A series of ‘drivers’ relevant to the research question were agreed upon and discussed. Results: Three drivers were identified. ‘Responsibility’ was related to the agency who assumed responsibility for providing nutrition support and understanding family carer obligation to provide nutrition support. ‘Family carer nutrition ethos’ was related to how carer nutrition beliefs, knowledge and values impacted the nutrition support they provided, the high self‐efficacy of family carers and an incongruence with an evidence‐based approach for treating malnutrition. ‘Quality of life’ was related to the carers’ focus upon quality of life as a nutrition strategy and outcome for their care‐recipients, as well as how nutrition support impacted upon carer burden. Conclusions: Rehabilitation units and rehabilitation dietitians should recognise and support family carers of malnourished patients, which may ultimately lead to an improved perceived benefit of care and patient outcomes. Intervention research is required to make strong recommendations for practice.
Objectives Severe necrotising soft tissue infections (NSTI) are rare life threatening rapidly progressing bacterial infections requiring immediate diagnosis and treatment. The aim of the study was to explore the experience of family caregivers of patients with necrotising soft tissue infection during the acute stage of disease. Methods Our study had a qualitative descriptive binational design using qualitative content analysis to explore diaries written by close family members (n=15). Participants were recruited from university hospitals in Denmark and Sweden. Findings Three main categories emerged: Trajectory, Treatment, and Patient & Family. The first helped us construct an overview of the NSTI trajectory showing issues of importance to patient and family caregivers. The following categories were analysed further to describe four themes central to the family caregiver experience: craving information, needing to be near, suffering separation and network taking over. Conclusions Necrotising soft tissue infections are uncommon causing shock and concern. Centralised treatment might involve physical separation of patient and family during the acute stage of illness. Family accommodations near the patient and accessibility to adequate communication devices at the bedside are recommended. Health professionals need to keep in mind the importance of information and reassurance on the wellbeing of the family and ultimately of the patient.
Context: Pain management was the most identified burden faced by family caregivers in end-of-life caregiving. Objectives: To synthesize current scientific evidence on family caregivers' experience of pain management in end-of-life care. Methods: A systematic review was conducted using CINAHL, Embase, PubMed, and Cochrane Library electronic databases. Data were extracted from each included paper and organized into tables to synthesize the findings. Results: Fourteen research papers focusing on family caregivers' experience of pain management and strategies in end-of-life care were included. Nine were observational studies, 3 were case studies, and 2 were experimental studies. These studies mainly focused on exploring family caregivers' engagement in pain management and communication with the hospice care team about pain control family caregivers' knowledge, skills, and self-efficacy in pain management and family caregivers' concerns and experience of pain management. Conclusion: This review identified themes similar to previous reviews on family caregivers of patients with cancer or in palliative care: inadequate knowledge and assessment skills in pain management, misunderstanding of pain medications, and poor communication with the care team. Future research should design educational programs and material for family caregivers to improve their pain management knowledge and skills, communication, and engagement in care. The scientific knowledge on this topic is scarce, and level of evidence is low it is therefore imperative to have more exploratory studies to expand the quality and quantity of evidence and increase our understanding of family caregivers' needs and barriers to pain management based on larger and more diverse patient and caregiver samples.
All doctors, irrespective of their specialty or the setting in which they work, will care for patients who die. Around half of all deaths occur in hospitals. Evidence suggests that the quality of communication around this process is poorer in hospitals than in other settings, according to responses from relatives who have experienced bereavement. Over half of NHS complaints concern care of the dying.This article discusses how to best support relatives and carers at the end of a patient's life. While the focus is on the hospital setting, the principles are applicable to community and care home settings. In this article, "relative" encompasses family members, care givers, and those close to the patient. The article presumes throughout that the patient has given consent for information to be shared with relatives.
Objective: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers. Method: The study was conducted during 2014 in Western Australia. Some 30 family caregivers and 4 care advisors participated in trialing the CSNAT intervention, which involved two visits from care advisors (6–8 weeks apart) to identify and address support needs. The feedback from family caregivers was obtained via telephone interviews and that of care advisors via a self-administered questionnaire. Results: A total of 24 caregivers completed the study (80% completion rate) and identified the highest support priorities as “knowing what to expect in the future,” “knowing who to contact if concerned,” and “equipment to help care.” The majority found that this assessment process adequately addressed their needs and gave them a sense of validation, reassurance, and empowerment. Care advisors advocated the CSNAT approach as an improvement over standard practice, allowing them to more clearly assess needs, to offer a more structured follow-up, and to focus on the caregiver and family. Significance of Results: The CSNAT approach for identifying and addressing family caregivers' support needs was found to be relevant and feasible by MND family caregivers and care advisors. The tool provided a formal structure to facilitate discussions with family caregivers and thus enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services, ensuring that new and improved services are designed to meet the explicit needs of the family caregivers of people with a motor neurone disease.
Background When seeking care at international hospitals and clinics, medical tourists are often accompanied by family members, friends, or other caregivers. Such caregiver-companions assume a variety of roles and responsibilities and typically offer physical assistance, provide emotional support, and aid in decision-making and record keeping as medical tourists navigate unfamiliar environments. While traveling abroad, medical tourists’ caregiver-companions can find themselves confronted with challenging communication barriers, financial pressures, emotional strain, and unsafe environments. Methods To better understand what actions and activities medical tourists’ informal caregivers can undertake to protect their health and safety, 20 interviews were conducted with Canadians who had experienced accompanying a medical tourist to an international health care facility for surgery. Interview transcripts were subsequently used to identify inductive and deductive themes central to the advice research participants offered to prospective caregiver-companions. Results Advice offered to future caregiver-companions spanned the following actions and activities to protect health and safety: become an informed health care consumer assess and avoid exposure to identifiable risks anticipate the care needs of medical tourists and thereby attempt to guard against caregiver burden become familiar with important logistics related to travel and anticipated recovery timelines and take practical measures to protect one’s own health. Conclusion Given that a key feature of public health is to use research findings to develop interventions and policies intended to promote health and reduce risks to individuals and populations, the paper draws upon major points of advice offered by study participants to take the first steps toward the development of an informational intervention designed specifically for the health and safety needs of medical tourists’ caregiver companions. While additional research is required to finalize the content and form of such an intervention, this study provides insight into what practical advice former caregiver-companions state should be shared with individuals considering assuming these roles and responsibilities in the future. In addition, this research draws attention to the importance of ensuring that such an intervention is web-based and readily accessible by prospective caregiver-companions.
Background: This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey. Methods: During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient’s admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions. Results: FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for “bodily pain”, FCs’ quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80–83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3). Conclusions: This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs’ satisfaction with SIPC seemed to be high. A current multicenter study evaluates these findings longitudinally in a large cohort of FCs.
Aims and objectives: To explore the experiences of family members of patients treated with extracorporeal membrane oxygenation. Background: Sudden onset of an unexpected and severe illness is associated with an increased stress experience of family members. Only one study to date has explored the experience of family members of patients who are at high risk of dying and treated with extracorporeal membrane oxygenation. Design: A qualitative descriptive research design was used. Methods: A total of 10 family members of patients treated with extracorporeal membrane oxygenation were recruited through a convenient sampling approach. Data were collected using open‐ended semi‐structured interviews. A six‐step process was applied to analyse the data thematically. Four criteria were employed to evaluate methodological rigour. Results: Family members of extracorporeal membrane oxygenation patients experienced psychological distress and strain during and after admission. Five main themes (Going Downhill, Intensive Care Unit Stress and Stressors, Carousel of Roles, Today and Advice) were identified. These themes were explored from the four roles of the Carousel of Roles theme (decision‐maker, carer, manager and recorder) that participants experienced. Conclusion: Nurses and other staff involved in the care of extracorporeal membrane oxygenation patients must pay attention to individual needs of the family and activate all available support systems to help them cope with stress and strain. Relevance to clinical practice: An information and recommendation guide for families and staff caring for extracorporeal membrane oxygenation patients was developed and needs to be applied cautiously to the individual clinical setting.
It has been well‐established that social environmental factors can increase the risk of rehospitalization for people receiving home healthcare services. For caregivers who might be challenged to keep up with sometimes unfamiliar health monitoring tasks or to know when to seek help, mobile health technology offers the potential to enhance the skills of informal caregivers and to improve the communication between home and clinical care. This paper described our recent work to determine the usability, functionality, and style of interaction that would be needed to provide an effective and well‐accepted tool. Caregivers would likely adopt new mobile health tools, as long as care is taken to eliminate potential barriers, for example, by providing adequate training, and to include design aspects that enhance one's motivation to use a tool, such as by supporting autonomy and engagement.
Objective: As the first stage in developing an intervention for family caregivers of individuals with advanced cancer, we conducted a focus group study to understand their needs. Background: Family caregivers play an important role in the care of advanced cancer patients. Despite substantial burden and distress experienced by family caregivers of individuals with advanced cancer, their needs are not addressed systematically. Method: The study took place at a large urban cancer center in Canada. We conducted 2 focus groups: one with 7 current family caregivers, the other with 7 bereaved caregivers. Participants were asked about their support needs while providing care, how and when they preferred to receive support, and the perceived barriers and facilitators to addressing their support needs. Responses were analyzed using the conventional content analysis method. Results: Family caregivers wished for support in relation to 3 domains: decision‐making in the face of uncertainty, information about death and dying, and current and anticipated emotional distress. They identified 3 barriers to receiving support: the organization of cancer care around the patient, rather than the family; the timing of information provision; and caregivers' tendency to dismiss their own needs. Caregivers expressed a strong need for caregiver‐specific support. Conclusion: This study allowed us to identify caregiver‐perceived intervention needs, barriers to access and continuity of intervention, and suggestions for intervention design. Implications: This information is of value to inform the design of interventions for this population.
Increasing attention is being paid to specific difficulties experienced by bereaved family caregivers (FCs). Limited capacity within health and social care structures results in high intensity of informal caregiving. The focus of recent research is the identification of specific predictors of adverse FC outcomes, in order to identify those FCs who will benefit most from intervention and support. Research is challenged by multiple influencing and confounding variables. This study aimed to evaluate factors of care associated with higher grief intensity in bereaved adult–child (AC‐FCs) and spousal FCs (S‐FCs). Data from the Qualycare study, a mortality follow‐back study of bereaved FCs of patients who died of cancer, was analyzed. Four hundred eighty‐four patient–FC dyads were included: 246 AC‐FCs and 238 S‐FCs. S‐FCs received more formal (SPC) (p = 0.026), and AC‐FCs more informal (p < 0.001), support. AC‐FCs were more likely to continue to work while caregiving (p < 0.001). Patients with AC‐FCs were more likely to spend time in and die in a nursing home (p < 0.001). Higher grief intensity was associated with higher caregiving intensity (p < 0.001), as well as other factors. AC‐FCs whose relative died in NH experienced significantly lower grief intensity (p < 0.001). Intensity of caregiving predicted 11.6% of variance in grief intensity for AC‐FCs compared to 0.5% for S‐FCs. The ‘relief model’ of bereavement is relevant for AC‐FCs. The support needs of AC‐FCs and S‐FCs differ. AC‐FCs should be targeted for practical supports and interventions, in order to support home‐death, if desired by patient and FC, and optimize bereavement outcomes.
Purpose: As the population ages, older adults are more often living with functional limitations from chronic illnesses, such as stroke, and require assistance. Because stroke occurs suddenly, many stroke family caregivers in the United States are unprepared to assume caregiving responsibilities post-discharge. Research is limited on how family members become ready to assume the caregiving role. In this study, we developed a theoretical model for improving stroke caregiver readiness and identifying gaps in caregiver preparation. Design and Methods: We interviewed 40 stroke family caregivers caring for 33 stroke survivors during inpatient rehabilitation and within 6 months post-discharge for this grounded theory study. Data were analyzed using dimensional analysis and constant comparative techniques. Results: Caregivers identified critical areas where they felt unprepared to assume the caregiving role after discharge from inpatient rehabilitation. Steps to improve preparation include (a) conducting a risk assessment of the patient and caregiver; (b) identifying and prioritizing gaps between the patient’s needs and caregiver’s commitment and capacity; and (c) developing a plan for improving caregiver readiness. Implications: The model presented provides a family-centered approach for identifying needs and facilitating caregiver preparation. Given recent focus on improving care coordination, care transitions, and patient-centered care to help improve patient safety and reduce readmissions in this population, this research provides a new approach to enhance these outcomes among stroke survivors with family caregivers.
Purpose/Objectives: To explore family caregivers’ perspectives of caring for patients with terminal hepatocellular carcinoma (HCC) as patients approached the end of life. Research Approach: Longitudinal, qualitative descriptive design. Setting: Oregon Health and Science University in Portland and Veterans Affairs Portland Health Care System in Oregon. Participants: 13 family caregivers with a mean age of 56 years (range = 22–68 years). The majority of family caregivers were female (n = 10) and identified as White (n = 11). Methodologic Approach: Interview data were collected from family caregivers once a month for as many as six months, for a total of 39 interviews. Data were analyzed using conventional content analysis. Findings: Five core categories and nine subcategories were identified. From the time of the terminal diagnosis to the end of life, family caregivers felt unprepared, uncertain, and in need of information. They struggled with whether symptoms were HCC- or cirrhosis-related. Interpretation: Nurses can support family caregivers by eliciting their knowledge and concerns, and attending to symptom presentation and interpretation and to treatment challenges. Understanding challenges caregivers experience is crucial for developing interventions that address their desire for information, support, and help along the HCC disease trajectory. Implications for Nursing: Nurses play a critical role in preparing caregivers to understand the importance of pain assessment and management and early referral to palliative care.
Objectives: Caring for community-residing patients with heart failure can affect caregivers’ emotional wellbeing. However, few studies have examined caregivers’ well-being longitudinally, or identified factors associated with positive and negative outcomes. The objective of this longitudinal cohort study was to examine changes in caregivers’ well-being over time, and to identify patient and caregiver factors associated with positive and negative outcomes. Method: Fifty caregiver/heart failure patient dyads were recruited from an acute care facility and followed in the community. All participants completed surveys at hospital admission and 3, 6 and 12 months later. Caregivers completed assessments of depression symptoms and positive affect and standardized measures to capture assistance provided, mastery, personal gain, social support, participation restriction, and patients’ behavioral and psychological symptoms. From patients, we collected demographic characteristics and health-related quality of life. Individual Growth Curve modelling was used to analyze the data. Results: Caregivers’ negative and positive emotions remained stable over time. Depression symptoms were associated with higher participation restriction in caregivers. Positive affect was associated with more personal gain and more social support. Patients’ health-related quality of life and their behavioral and psychological symptoms were not significantly associated with caregivers’ emotional outcomes. Conclusion: Interventions should be offered based on caregivers’ needs rather than patients’ health outcomes, and should focus on fostering caregivers’ feelings of personal gain, assisting them with securing social support, and engaging in valued activities.
Significant others are often crucial for suicidal persons or suicide attempters’ access to care, yet little is known about their efforts to seek help. This article presents the findings of a qualitative pilot study carried out in Switzerland on the help-seeking process of 18 significant others, their perception of the care received by their loved one, and the interactions and collaboration they experienced with professionals. Most significant others repeatedly sought out support for their loved one and themselves. The help-seeking process seemed mostly difficult, was seldom successful on the first attempt, and was filled with multiple difficulties, such as availability and continuity of care and cooperation issues with professionals. Two-thirds of participants were not satisfied with the care provided to their loved ones and half of them faced challenges in their cooperation with professionals, i.e., poor sharing of information or not being acknowledged as partners or supported by professionals. Based on their experience, providing education about suicidal crises and care programs to significant others might lighten their burden and improve their cooperation with professionals, who in turn may benefit from training in communication issues and specific methods of cooperation with significant others in suicidal situations.
Frailty is a common condition in older age and is a public health concern which requires integrated care and involves different stakeholders. This meta-synthesis focuses on experiences, understanding, and attitudes towards screening, care, intervention and prevention for frailty across frail and healthy older persons, caregivers, health and social care practitioners. Studies published since 2001 were identified through search of electronic databases; 81 eligible papers were identified and read in full, and 45 papers were finally included and synthesized. The synthesis was conducted with a meta-ethnographic approach. We identified four key themes: Uncertainty about malleability of frailty; Strategies to prevent or to respond to frailty; Capacity to care and person and family-centred service provision; Power and choice. A bottom-up approach which emphasises and works in synchrony with frail older people's and their families' values, goals, resources and optimisation strategies is necessary. A greater employment of psychological skills, enhancing communication abilities and tools to overcome disempowering attitudes should inform care organisation, resulting in more efficient and satisfactory use of services. Public health communication about prevention and management of frailty should be founded on a paradigm of resilience, balanced acceptance, and coping. Addressing stakeholders’ views about the preventability of frailty was seen as a salient need.
In the palliative phase of a person's illness, the needs of the patient and informal caregivers are paramount. Caregivers often look to palliative care practitioners for support, guidance and emotional comfort. This article reviews the role of the informal caregiver at the end of life, summarising their concerns and needs. The paper also highlights caregiver difficulties in making the coping transition when the patient's medical condition becomes advanced and they require end-of-life care. The focus of the review is placed on discussions about Advanced Care Planning (ACP). ACP is a complex legal, ethical and practical issue that can enable caregivers to consider future strategies and enable them to provide high quality care at the end of life. The paper looks at some of the ethical and legal issues associated with this sensitive end-of-life issue.
Background/Aims: Despite reporting high levels of burden, supporters of people with young onset dementia (YOD) underuse formal community services. Previous quantitative studies in YOD are of limited utility in guiding service design because they did not consider important contextual barriers to service use. The aim of this study was to identify all relevant barriers and describe the service features considered most important to improving uptake by people with YOD and their supporters.
Methods: Eighty-six people with consensus-confirmed YOD (mean onset age 55.3 years) and/or their primary supporter participated in quantitative interviews, and 50 also participated in one of seven qualitative focus groups. Interview participants reported levels of community service use and reasons for non-use, functional impairment, behavioural and psychological symptoms, supporter burden, social network, and informal care provision. Focus group participants expanded on reasons for non-use and aspects of an ideal service.
Results: Although at least one community service was recommended to most participants (96.8%), 66.7% chose not to use one or more of these. Few of the clinical or demographic factors included here were related to service use. Qualitative analyses identified that lack of perceived need, availability, and YOD-specific barriers (including ineligibility, unaffordability, lack of security, lack of childcare) were commonly reported. Five aspects of an ideal service were noted: unique, flexibile, affordable, tailored, and promoting meaningful engagement.
Conclusion: People with YOD and their families report that formal community services do not meet their personal and psychological needs. Researchers can provide ongoing assessment of program feasibility, suitability, and generalisability.
Background: Palliative care for Parkinson's disease (PD) is an emerging area of interest for clinicians, patients and families. Identifying the palliative care needs of caregivers is central to developing and implementing palliative services for families affected by PD. The objective of this paper was to elicit PD caregiver needs, salient concerns, and preferences for care using a palliative care framework.
Materials and Methods: 11 PD caregivers and one non-overlapping focus group (n = 4) recruited from an academic medical center and community support groups participated in qualitative semi-structured interviews. Interviews and focus group discussion were digitally recorded, transcribed and entered into ATLAS.ti for coding and analysis. We used inductive qualitative data analysis techniques to interpret responses.
Results: Caregivers desired access to emotional support and education regarding the course of PD, how to handle emergent situations (e.g. falls and psychosis) and medications. Participants discussed the immediate impact of motor and non-motor symptoms as well as concerns about the future, including: finances, living situation, and caretaking challenges in advanced disease. Caregivers commented on the impact of PD on their social life and communication issues between themselves and patient. All participants expressed interest and openness to multidisciplinary approaches for addressing these needs.
Conclusions: Caregivers of PD patients have considerable needs that may be met through a palliative care approach. Caregivers were receptive to the idea of multidisciplinary care in order to meet these needs. Future research efforts are needed to develop and test the clinical and cost effectiveness of palliative services for PD caregivers.
Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients’ best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers’ satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-to-use ‘blended care’ instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country- or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.
Objective: to reveal the felt and normative needs of primary family caregivers when providing instrumental support to older adults enrolled in a Home Care Program in a Primary Health Service in the South of Brazil.
Methods: using Bradshaw's taxonomy of needs to explore the caregiver's felt needs (stated needs) and normative needs (defined by professionals), a mixed exploratory study was conducted in three steps: Descriptive quantitative phase with 39 older adults and their caregiver, using a data sheet based on patient records; Qualitative exploratory phase that included 21 caregiver interviews, analyzed by content analysis; Systematic observation, using an observation guide with 16 caregivers, analyzed by descriptive statistics.
Results: the felt needs were related to information about instrumental support activities and subjective aspects of care. Caregivers presented more normative needs related to medications care.
Conclusion: understanding caregivers' needs allows nurses to plan interventions based on their particularities.
Aims and objectives: To explore parents’ involvement in the informal and professional care of their young adult child with mental illness. A further aim was to examine concepts in the caring theory of ‘Involvement in the light–Involvement in the dark’ in the context of mental health care.
Background: Mental illness has increased among young people in high‐income countries, and suicide is now the leading cause of death for this group. Because of their disease, these young people may have difficulty in carrying out daily, taken‐for‐granted, tasks. Consequently, they often become dependent on their parents, and their parents shoulder a considerable responsibility.
Design: A secondary descriptive design with a deductive content analysis was used.
Methods: Ten parents who have a son or daughter with long‐term mental illness (aged 18–25 years) were interviewed. The deductive analysis was based on the caring theory of ‘Involvement in the light–Involvement in the dark’.
Results: The results are described using the following concepts in the theory: ‘Knowing’, ‘Doing’, ‘Being’ and ‘Attitude of the health professionals’. The result are to a great extent consistent with the ‘Involvement in the dark’ metaphor, which describes an isolated involvement in which the parents were not informed, seen or acknowledged by the health professionals. Continuous support by professionals with a positive attitude was described as being of decisive importance for meaningful involvement. The theory's transferability is strengthened to the mental health care context.
Conclusions: Parents have a considerable need for knowledge that can enable them to choose how they should act (be) and what they should do, in order to help and support their child.
Relevance to clinical practice: Since the patient, the family members and the professionals are mutually dependent, it is important to make use of each other’s knowledge in a partnership to achieve a common caring strategy.
Objective: To describe the extent and correlates of caregiving‐related needs among family caregivers of Singaporeans aged 75+ with ≥1 activity of daily living limitations (care‐recipients).
Methods: National survey data of 1181 care‐recipient/caregiver dyads were used. Caregiver's report (yes/no) of 16 needs was assessed. Care‐recipient and caregiver correlates of each need were determined through logistic regression analysis.
Results: Caregiving‐related needs were expressed by 42.3% caregivers. The most commonly reported need was keeping care‐recipient safe at home (24.5%). Needs concerned with caring for care‐recipients were more frequent than those concerned with the caregiver's own needs. The most frequent correlate was care‐recipient's extent of mood impairment (associated with 13 needs).
Conclusion: Caregivers should not neglect themselves when engaging in care provision. Families and service providers should explore whether reported lack of needs reflects limited awareness and/or under‐reporting.
Objectives: Health and social care services are increasingly reliant on informal caregivers to provide long-term support to stroke survivors. However, caregiving is associated with elevated levels of depression and anxiety in the caregiver that may also negatively impact stroke survivor recovery. This qualitative study aims to understand the specific difficulties experienced by caregivers experiencing elevated symptoms of anxiety and depression.; Methods: Nineteen semi-structured interviews were conducted with caregivers experiencing elevated levels of depression and anxiety, with a thematic analysis approach adopted for analysis.; Results: Analysis revealed three main themes: Difficulties adapting to the caring role; Uncertainty; and Lack of support.; Conclusions: Caregivers experienced significant difficulties adapting to changes and losses associated with becoming a caregiver, such as giving up roles and goals of importance and value. Such difficulties persisted into the long-term and were coupled with feelings of hopelessness and worry. Difficulties were further exacerbated by social isolation, lack of information and poor long-term health and social care support.; Clinical Implications: A greater understanding of difficulties experienced by depressed and anxious caregivers may inform the development of psychological support targeting difficulties unique to the caring role. Improving caregiver mental health may also result in health benefits for stroke survivors themselves.
Background: This systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment.; Methods: Ten electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes.; Results: Fifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1-84.4%), fatigue (18-76.3%), and "being informed about benefits and side-effects of treatment" (4-66.7%). The most commonly identified unmet needs for informal caregivers were information needs, including illness and treatment information (26-100%) and care-related information (21-100%). Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey (N = 8) and Problems and Needs in Palliative Care questionnaire (N = 5). The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross-sectional study design using single time-point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies.; Conclusion: Both advanced cancer patients and informal caregivers reported a wide range of context-bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.
Background: More than 5.4 million informal caregivers (ICGs) in the United States care for persons with dementia (PWD). Failure of ICGs to incorporate self-care into their routine may lead to adverse health consequences. Caregivers and researchers need to understand the evidence around dementia ICGs' self-care practices.; Purpose: To synthesize evidence on the self-care needs and behaviors of Alzheimer's and dementia ICGs and its research implications.; Methods: PubMed, CINAHL, Scopus, and Web of Science were searched to conduct a systematic review of research. Orem's self-care theory and a concept analysis of self-management behaviors provided a framework for the review.; Results: Three themes emerged from 29 included studies: self-care needs and behaviors of ICGs, barriers to performing self-care, and enablers of self-care. The self-care needs of dementia ICGs included sleep, social engagement and support, and leisure activities. Self-care behaviors identified by this review were engaging in activities with the PWD, spiritual and religious activities, and taking a break from caregiving. Barriers to self-care were gender roles, self-sacrificing, minority ethnicity, and burden of caregiving. Enabling self-care involved acknowledging personal consequences of caregiving, balancing self-care needs with the PWD's needs, and positioning oneself as an objective/subjective duality.; Implications: Self-care is a dynamic, challenging aspect to caregiving, but supporting evidence is often limited or cannot be generalized. More studies are needed that include random sampling, heterogeneous samples, and quantitative methods. Additional research is needed to understand how self-care needs, behaviors, and barriers differ by caregiver race/ethnicity, gender, or relationship to the PWD.
Objectives: The individual burden of caring for one's relatives not only depends on care characteristics but is also related to contextual factors. The objective of this study is to determine whether regional formal long-term care provision is linked to the well-being of spousal caregivers introducing the concept of "control" as central pathway to explain this link.; Method: We applied multilevel analysis using data from the Survey of Health, Ageing and Retirement in Europe (SHARE) from over 29,000 Europeans and 1,800 spousal caregivers located in 138 regions in 11 countries to analyze the effects of regional contexts on caregiver well-being. The provision of formal care in a region was measured by the number of long-term care beds in nursing and residential homes among the older population.; Results: We found that spousal caregivers' well-being, measured in terms of life satisfaction, loneliness, and depression, was positively linked to the regional availability of formal care, which is partly due to higher perceived control in regions with more formal care provision.; Discussion: Our results suggest that formal care supply is essential not only for care recipients but also for caregivers: perceived alternatives to the private care arrangement go along with greater well-being of informal caregivers.
Background: Web-based peer support interventions have shown promise in reducing social isolation and social support deficits among informal caregivers, but little research has examined how caregivers use and perceive these interventions.; Objective: In this study, we examined utilization and perceptions of a Web-based social support intervention for informal caregivers of wounded, ill, and injured United States military service members and veterans.; Methods: This was a mixed-methods study that used quantitative survey data and qualitative data from focus groups and interviews with informal caregivers enrolled in a Web-based peer support intervention to explore their use and perceptions of the intervention. The intervention was delivered via a website that featured interest groups organized around specific topics, webinars, webchats, and messaging functionality and was moderated by professionally trained peers. This study occurred in the context of a quasi-experimental outcome evaluation of the intervention, where intervention participants were compared with a group of military caregivers who were not enrolled in the intervention.; Results: Survey findings indicated that caregivers used the website infrequently, with 60.7% (128/211) visiting the website once a month or less, and passively, with a minority (32/144, 22.2%) of users (ie, those who had visited the website at least once during the past 3 months, N=144) posting comments or links to the network. Nonetheless, most users (121/144, 84.0%) endorsed moderate or greater satisfaction with the website on the survey, and focus group and interview participants reported benefiting sufficiently from passive use of the website (eg, reading posts). Quantitative and qualitative findings suggested that users viewed the website primarily as a source of informational support. Among 63.2% (91/144) of users who completed the survey, the most commonly reported network-related activity was obtaining information from the network's resource library, and focus group and interview participants viewed the network primarily as an informational resource. Focus group and interview participants expressed an unmet need for emotional support and the desire for a more personal touch in the forms of more active engagement with other caregivers in the network and the creation of local, in-person support groups for caregivers.; Conclusions: These findings suggest that Web-based peer support interventions may lend themselves better to the provision of informational (vs emotional) support and may need to be supplemented by in-person peer support groups to better meet caregivers' needs for emotional support.
Purpose: The transition out of acute cancer treatment has been identified as a time of stress and uncertainty for cancer survivors, but little is known about how caregivers fare during this period. In this paper, we discuss caregiving work up to and including transition from initial care and the needs of caregivers during transition and beyond.; Methods: We held four focus groups with breast, prostate, and colorectal cancer survivors who had completed treatment with intent to cure and two with caregivers for the same population. Participants were affiliated with either an urban academic or rural community cancer center. The discussions focused on cancer-related experiences and needs during the transition out of acute cancer care.; Results: Focus groups included 47 people: 28 survivors and 19 caregivers. Three key caregiving themes identified the significance of support for the patient in the clinic, support for the patient in the home, and for caregiver self-care.; Conclusions: Discussions revealed aspects of caregiving that created difficulties for the caregiver themselves or between the caregiver and the cancer survivor. Caregiver experiences and needs may warrant explicit attention as survivors and caregivers are adjusting to a "new normal" that is no longer centered on getting through treatment.; Implications For Cancer Survivors: Patients and informal caregivers are often conceptualized as a "unit of care"; consideration of the needs of both is important for the provision of appropriate and effective health services.
Purpose: To describe the experiences of informal caregivers with the nursing care received by relatives hospitalized for mania.; Design and Methods: Multicenter phenomenological study using open interviews. Data were analyzed using the Stevick-Colaizzi-Keen method.; Findings: The essence of the experiences was the importance of communication, about being informed and involved in treatment during hospitalization of their relative. The experiences depended on the nature of the relation between participant and relative.; Practice Implications: Nurses should listen to caregivers' experiences, inquire about the expectations of caregivers regarding nursing care, and advise informal caregivers on how to take care of their relatives.
Background: Population aging places greater demands on the supply of informal carers. The aims of this study were to examine (1) the types of unmet support needs of carers of older Australians and (2) the association of unmet needs with mental health.; Methods: Utilizing new data from the 2015 Australian Bureau of Statistics (ABS) Survey of Disability, Ageing and Carers, we calculated the prevalence of carers experiencing specific and multiple unmet needs for support, using single and multiple item measures. Logistic regression models were fitted to examine the association between unmet needs and psychological distress (using the Kessler psychological distress scale), once demographic and health factors were controlled for.; Results: In 2015, 35% of carers of older Australians cited at least one unmet need for support. Among this group, almost two-thirds cited multiple unmet support needs (64.7%). The most prevalent types of unmet needs included financial (18%), physical (13%), and emotional support (12%), as well as additional respite care and support to improve carer health (12%). After controlling for demographic and health characteristics of the carer, having any unmet need for support increased the odds of psychological distress by twofold (OR = 2.20, 95% CI = 1.65, 2.94). With each successive unmet need for support, the odds of psychological distress increased 1.37 times (OR = 1.36, 95% CI = 1.22, 1.54). Those who had received assistance with care, but required further support were 1.95 times more likely (OR = 1.95, 95% CI = 1.17, 3.24) to be in distress and those who had not received care assistance were about 2.4 times more likely (OR = 2.38 95% OR = 1.56, 3.62) to be in distress relative to those with no unmet need.; Conclusions: Addressing unmet support needs of carers is important, not only for the planning of services for carers in an aging population, but also because of the association between unmet support needs and carers mental health.
The CSNAT is an evidence-based tool that facilitates tailored support for family members and friends (carers) of adults with long term life-limiting conditions. The research underpinning this tool was informed by carers and practitioners.
It comprises 14 domains (broad areas of need) in which carers commonly say they require support. Carers may use this tool to indicate further support they need both to enable them to care for their family member or friend and to preserve their own health and well-being within their caregiving role.
It is short and simple to use for both carers and practitioners. Online training is also available
The online training can be accessed free of charge and allows health and social care practitioners to access Continuing Professional Development (CPD) accredited training in how to implement The CSNAT Approach, in order to best meet the needs of carers of patients with life-limiting illness. The training also addresses key organisational issues to be considered in planning, piloting and sustaining implementation in the longer term.
To improve the care of seniors living with dementia, current initiatives typically target better identification and treatment of the patient. Our recent survey, however, shows we should also focus more on the needs of the informal caregivers who care for this population in primary care settings. This three-round Delphi survey sought caregivers' views on the most frequent and difficult decisions that seniors with dementia, their informal caregivers, and health care providers face in primary care settings in the province of Quebec. Respondents consisted of 31 health care professionals, informal caregivers, managers, representatives of community-based organizations devoted to these seniors, and clinical researchers involved in the organization of care or services to seniors with dementia. When we asked respondents to rank 27 common but difficult decisions involving benefit/harm trade-offs, 83% ranked the decision to choose an option to reduce the burden of informal caregivers as one of the five most important decisions. Choosing a treatment to manage agitation, aggression or psychotic symptoms followed closely, with 79% of respondents selecting it as one of the five most important decisions. Our results point to the importance of attending to the needs of informal caregivers and improving the management of behavioural and psychological symptoms of dementia.
Background: Oldest-old persons frequently receive potentially inappropriate medication. Medication use takes place under the patients' informal caregivers' influence. We explored informal caregivers' perspectives on medication of (relatively) independent oldest-old persons to identify starting points for safer medication prescription/handling.; Methods: In this exploratory qualitative interview study we interviewed 45 informal caregivers of 45 oldest-old persons (23 with potentially inappropriate medication/22 without potentially inappropriate medication). Interviews were recorded, transcribed and content analyzed (deductive/inductive coding).; Results: Interviewees had little knowledge about/influence on oldest-old persons' medication, but declared to monitor oldest-old persons' needs for assistance. They were unaware of the concept of potentially inappropriate medication but sometimes sensitive to substance dependency. Most informal caregivers were satisfied with the oldest-old persons' medication and viewed medication as increasing the patients' quality of life. Inadequate communication was found between informal caregivers and general practitioners.; Conclusions: Influence of informal caregivers on (relatively) independent oldest-old persons' medication seems low. Stakeholders need to be aware that there is a transitional period where independency of oldest-old persons decreases and support needs increase which may be missed by (in-)formal caregivers or concealed by oldest-old persons. Monitoring patients' medication competencies; measures supporting communication between informal caregivers and health care professionals; provision of educational and support resources for informal caregivers and the acceptance of oldest-old persons' increasing assistance needs may increase medication safety.
Objective: To describe and explain stroke survivors and informal caregivers' experiences of primary care and community healthcare services. To offer potential solutions for how negative experiences could be addressed by healthcare services.; Design: Systematic review and meta-ethnography.; Data Sources: Medline, CINAHL, Embase and PsycINFO databases (literature searched until May 2015, published studies ranged from 1996 to 2015).; Eligibility Criteria: Primary qualitative studies focused on adult community-dwelling stroke survivors' and/or informal caregivers' experiences of primary care and/or community healthcare services.; Data Synthesis: A set of common second order constructs (original authors' interpretations of participants' experiences) were identified across the studies and used to develop a novel integrative account of the data (third order constructs). Study quality was assessed using the Critical Appraisal Skills Programme checklist. Relevance was assessed using Dixon-Woods' criteria.; Results: 51 studies (including 168 stroke survivors and 328 caregivers) were synthesised. We developed three inter-dependent third order constructs: (1) marginalisation of stroke survivors and caregivers by healthcare services, (2) passivity versus proactivity in the relationship between health services and the patient/caregiver dyad, and (3) fluidity of stroke related needs for both patient and caregiver. Issues of continuity of care, limitations in access to services and inadequate information provision drove perceptions of marginalisation and passivity of services for both patients and caregivers. Fluidity was apparent through changing information needs and psychological adaptation to living with long-term consequences of stroke.; Limitations: Potential limitations of qualitative research such as limited generalisability and inability to provide firm answers are offset by the consistency of the findings across a range of countries and healthcare systems.; Conclusions: Stroke survivors and caregivers feel abandoned because they have become marginalised by services and they do not have the knowledge or skills to re-engage. This can be addressed by: (1) increasing stroke specific health literacy by targeted and timely information provision, and (2) improving continuity of care between specialist and generalist services.; Systematic Review Registration Number: PROSPERO 2015:CRD42015026602.
Aims and Objective: To explore the experiences of community patients living with a urethral catheter and those caring for them.; Background: Living at home with an indwelling urethral catheter often results in consequences that create a double-edged burden: first, on patients and their relative carers and second, in terms of unscheduled community nurse service "out-of-hours" provision.; Design: One-to-one interviews were conducted with patients living at home, their relative carers, qualified community nurses, augmented home carers and healthcare assistant. Quantitative data in relation to frequency, duration and reason for visits were extracted from the community nurse "out-of-hours" service database.; Results: Quantitative data showed that 20% of all community nurses unscheduled "out-of-hours" visits were triggered by an indwelling urethral catheter consequence. Qualitative data revealed that health and social care staff felt knowledgeable and skilled in urethral catheter management. Conversely, patients and relative carers felt poorly equipped to manage the situation when something went wrong. The majority of patients described the catheter as being a debilitating source of anxiety and pain that reduced their quality of life.; Conclusion: Urethral catheter complications are frequent and impact seriously on quality of life with informal carers also affected. Community nurses experienced frequent unscheduled visits. Patients often feel isolated as well as lacking in knowledge, skills and information on catheter management. Having better urethral catheter information resources could increase patient and relative carer confidence, encourage self-care and problem solving, as well as facilitate meaningful consistent dialogue between patients and those who provide them with help and support.; Relevance To Clinical Practice: Better patient information resources regarding urethral catheter management have potential to improve patient and relative carer quality of life and reduce service provision burden.
Background: Medication management is commonly performed by informal caregivers, yet they are often unprepared and ill-equipped to manage complex medication regimens for their older adult care recipients. In order to develop interventions that will enhance the caregiver's ability to safely and confidently manage medications, it is critical to first understand caregiver challenges and unmet needs related to medication management.; Objectives: To explore how informal caregivers manage medications for their older adult care recipients by identifying the activities involved in medication management and the tools or strategies used to facilitate these activities.; Methods: Four focus groups with caregivers of older adults were conducted with 5-9 caregivers per group. Participants were asked to describe the medication management activities performed and the tools or strategies used to facilitate these activities. Focus groups were recorded, transcribed verbatim, and analyzed for themes using an inductive approach.; Results: Caregivers were commonly involved in 2 types of activities: direct activities requiring physical handling of medications such as obtaining medications, preparing pill boxes, and assisting with medication administration; and indirect activities that were more complex and required more of a cognitive effort by the caregiver, such as organizing and tracking medications, gathering information, and making treatment decisions. They utilized a variety of tools and strategies to support these medication management activities; however, these approaches often needed to be modified or personalized to meet the specific needs of their caregiving situation.; Conclusions: Informal caregivers play a vital role in ensuring safe and appropriate medication use by older adults. Medication management is complex and involves many activities that are supported through the use of a variety of tools and strategies that have been adapted and individualized to each specific caregiving scenario. Caregivers should be an important component of interventions that aim to improve medication use among older adults.
Objectives: To describe nurses' practices, confidence, and knowledge of evidence-based interventions for cancer caregiver strain and burden and to identify factors that contribute to these aspects. ; Sample & Setting: 2,055 Oncology Nursing Society members completed an emailed survey.; Methods & Variables: Pooled analysis of survey results. Variables included the baseline nursing assessment, intervention, confidence, knowledge, strategies used, and barriers encountered. ; Results: Nurses tend to overestimate the strength of evidence for interventions not shown to be effective and have moderate confidence in assessing and intervening with caregivers. Having been an informal caregiver and having received care from an informal caregiver were associated with higher reported practice and confidence. Major strategies used were referral to social workers and others. Barriers reported were financial, caregiver emotional responses, and distance. ; Implications For Nursing: An opportunity exists to increase nurses' knowledge and confidence in assessment and intervention with caregivers. Greater use of technology may help nurses overcome some barriers to working with caregivers. Findings can be used to plan continuing education, develop clinical processes, and identify resources nurses need to address strain and burden among informal caregivers.
Objective: To translate, culturally adapt, and psychometrically evaluate the Spanish version of the "Scale for End-of Life Caregiving Appraisal" (SEOLCAS).; Method: Observational cross-sectional study. Convenience sample of 201 informal end-of-life caregivers recruited in a southern Spanish hospital. The reliability of the questionnaire was assessed through its internal consistency (Cronbach's α) and temporal stability (Pearson's correlation coefficient [r] between test-retest). The content validity index of the items and the scale was calculated. Criterion validity was explored through performing a linear regression analysis to evaluate the SEOLCAS' predictive validity. Exploratory factor analysis was used to examine its construct validity.; Results: The SEOLCAS' reliability was very high (Cronbach's α = 0.92). Its content validity was excellent (all items' content validity index = 0.8-1; scale's validity index = 0.88). Evidence of the SEOLCAS' criterion validity showed that the participants' scores on the SEOLCAS explained approximately 79.3% of the between-subject variation of their results on the Zarit Burden Interview. Exploratory factor analysis provided evidence of the SEOLCAS' construct validity. This analysis revealed that two factors ("internal contingencies" and "external contingencies") explained 53.77% of the total variance found and reflected the stoic Hispanic attitude toward adversity. Significance of resultsThe Spanish version of the SEOLCAS has shown to be an easily applicable, valid, reliable, and culturally appropriate tool to measure the impact of end-of-life care provision on Hispanic informal caregivers. This tool offers healthcare professionals the opportunity to easily explore Hispanic informal end-of-life caregivers' experiences and discover the type of support they may need (instrumental or emotional) even when there are communicational and organizational constraints.
Background/objective: Informal caregivers of patients with advanced cancer experience a challenging time, especially while caring for the patient at home. The aim of this study is to compare experiences, perceived burdens, and needs during home care of informal caregivers of brain tumor patients and informal caregivers of non-brain tumor patients.; Methods: 28 informal caregivers (17 brain tumor group, 11 non-brain tumor group) participated in this study. Semi-structured interviews were conducted to gather information retrospectively. Data was analyzed using principles of thematic analysis method.; Results: The results support existing evidence that the themes assessment of the situation, dealing with the situation, effects of the situation, and support by others are of importance to all informal caregivers. Caregivers in the brain tumor group put more emphasis on information and perception of the situation by others than caregivers in the non-brain tumor group.; Conclusion: The emerging need for information of caregivers and the effects for caregivers of changes in the perception of the situation by others should be addressed to better support informal caregivers of brain tumor patients.
Background: Informal caregivers provide extended support to people with cancer but they receive little support from the health care system to assist them in their caring role. The aim of this single-blind, multi-centre, randomised controlled trial was to test the efficacy of a telephone outcall program to reduce caregiver burden and unmet needs, and improve psychological well-being among cancer caregivers, as well as evaluating the potential impact on patient outcomes.; Methods: Cancer patient/caregiver dyads (N = 216) were randomised to a telephone outcall program (n = 108) or attention control group (n = 108). The primary outcome was self-reported caregiver burden. Secondary endpoints included depressive symptoms, unmet needs, self-esteem, self-empowerment, and health literacy. Data were collected at baseline and at both 1 and 6 months post-intervention. An intention to treat analysis was performed.; Results: The intervention had no effect on the primary outcome (caregiver burden), but reduced the number of caregiver unmet needs (intervention group baseline, mean = 2.66, 95% confidence interval (CI) [1.91-3.54]; intervention group 1 month post intervention, mean = 0.85, 95%CI [0.42-1.44]; control group baseline, mean = 1.30 95%CI [0.80-1.94], control group 1 month post intervention, mean = 1.02 95%CI [0.52-1.69]; p = 0.023). For caregivers at risk for depression, the intervention had a significant effect on caregivers' confidence in having sufficient information to manage their health (p = 0.040). No effects were found for patients' depressive symptoms, unmet needs, self-empowerment, and other health literacy domains.; Conclusions: While caregiver burden was not reduced, the outcall program was effective in reducing unmet needs in caregivers. Provision of cancer information and support via a telephone service may represent a feasible approach to reducing unmet needs among cancer caregiver populations.; Trial Registration: ACTRN12613000731796 ; prospectively registered on 02/07/2013.;
Background: Many people with Parkinson's disease (PD) (PwP) require care from either informal or formal carers, due to worsening symptoms. Carer strain is a recognised consequence of caring. However there are few data on the role and profile of informal carers and if this impacts on carer strain.; Method: People with moderate to advanced PD, with an informal carer were invited to participate. Data regarding motor and non-motor symptoms of the participant, along with demographics, tasks and duration of caring and health issues of the carer were collected.; Results: One-hundred and fifteen participants and their carer were recruited. Mean carer age was 70.7 years, 66.1% were female caring for a median of 16 hours per day. Over 80% provided help in housework and companionship activities, 63.2% with dressing and 49.1% with feeding. There was a significant relationship between disease stage and level of strain. Participant age, physical and cognitive disability were significantly associated with greater care need. High care need was associated with poor carer quality of life.; Conclusions: The care needs of PwP are considerable. To reduce carer strain and improve quality of life, carers' needs must be considered to enable them to carry on with their vital role.
Objectives: The purpose of this review was to examine and synthesize recent literature regarding problems experienced by informal caregivers when providing care for individuals with heart failure in the home.; Design: Integrative literature review.; Data Sources: A review of current empirical literature was conducted utilizing PubMed, CINAHL, Embase, Sociological Abstracts, Social Sciences Full Text, PsycARTICLES, PsycINFO, Health Source: Nursing/Academic Edition, and Cochrane computerized databases. 19 qualitative, 16 quantitative, and 2 mixed methods studies met the inclusion criteria for review.; Review Methods: Computerized databases were searched for a combination of subject terms (i.e., MeSH) and keywords related to informal caregivers, problems, and heart failure. The title and abstract of identified articles and reference lists were reviewed. Studies were included if they were published in English between January 2000 and December 2016 and examined problems experienced by informal caregivers in providing care for individuals with heart failure in the home. Studies were excluded if not written in English or if elements of caregiving in heart failure were not present in the title, abstract, or text. Unpublished and duplicate empirical literature as well as articles related to specific end-stage heart failure populations also were excluded. Methodology described by Cooper and others for integrative reviews of quantitative and qualitative research was used. Quality appraisal of the included studies was evaluated using the Joanna Briggs Institute critical appraisal tools for cross-sectional quantitative and qualitative studies.; Results: Informal caregivers experienced four key problems when providing care for individuals with heart failure in the home, including performing multifaceted activities and roles that evolve around daily heart failure demands; maintaining caregiver physical, emotional, social, spiritual, and financial well-being; having insufficient caregiver support; and performing caregiving with uncertainty and inadequate knowledge.; Conclusions: Informal caregivers of individuals with heart failure experience complex problems in the home when providing care which impact all aspects of their lives. Incorporating advice from informal caregivers of individuals with heart failure will assist in the development of interventions to reduce negative caregiver outcomes. Given the complex roles in caring for individuals with heart failure, multicomponent interventions are potentially promising in assisting informal caregivers in performing these roles.
Background: Persons with dementia (PWDs) and their caregivers often face difficult housing decisions, that is, decisions about their living arrangements, in which the perspectives of all members of the care network should be involved.; Objective: We performed a qualitative data analysis to assess the extent to which housing decisions for PWDs with their formal and informal caregivers correspond to an interprofessional shared decision making (IP-SDM) approach, and what light this approach sheds on their experiences with decision making.; Research Design and Methods: We used the IP-SDM model to content-code and analyze data from 4 care networks, each consisting of a PWD, 2 informal and 2 formal caregivers.; Results: Decision making in all networks corresponded to most IP-SDM elements, but never included all network members. Decision making was guided by the wishes of the PWD, but their actual involvement decreased over time.; Discussion: Results show that while the IP-SDM model was helpful, the options change with cognitive decline and moving to a nursing home can become inevitable in spite of preferences.; Implications: Timely and honest communication helps to mitigate the distress of deciding against patient preferences, as could advance care planning about future housing transitions.
Informal caregiving is the most common form of long-term care provided in the United States, and with the projected rapid growth of older adults, informal caregiving will be even more critical in the foreseeable future. In the United States, slightly more than 20% of informal caregivers provide care for more than one care recipient, and 10% provide care for three or more care recipients. Caring for a dependent, older adult patient may have negative effects on physical, psychological, psychosocial, social and financial health of caregivers. Careful assessment of the impact of informal caregiving on the caregiver's functioning is imperative, and will enable a practitioner to not only find ways to help caregivers shoulder the effects of caregiving, but also to measure the effectiveness of interventions that seek to mitigate the effects of caregiving.
Informal caregiving is the most common form of long-term care provided in the United States, and with the projected rapid growth of older adults, informal caregiving will be even more critical in the foreseeable future. In the United States, slightly more than 20% of informal caregivers provide care for more than one care recipient, and 10% provide care for three or more care recipients. Caring for a dependent, older adult patient may have negative effects on physical, psychological, psychosocial, social and financial health of caregivers. Careful assessment of the impact of informal caregiving on the caregiver's functioning is imperative, and will enable a practitioner to not only find ways to help caregivers shoulder the effects of caregiving, but also to measure the effectiveness of interventions that seek to mitigate the effects of caregiving.
Informal carers play a key role in supporting patients with chronic obstructive pulmonary disease (COPD), particularly when disease is advanced. They also enable delivery of healthcare professional advice. There is a well-established impact of the caring role on carers in both the generic and COPD-specific literature. The needs of carers of patients with COPD are both generic to the caring role and disease specific. Healthcare professionals and health systems supporting patients with COPD need to actively identify and support carers. Carer assessment enables unmet needs to be identified and appropriately addressed. Assessments should consider carers' support needs, their caring capacity and practices, and carers own clinical needs. This narrative review outlines considerations for the assessment process including what should be assessed, who should conduct assessment and what should happen as a result of assessment.
Introduction: Worldwide, most people with dementia live at home and are cared for by informal carers. During the dementia care trajectory, creating and maintaining a stable care situation is a guiding principle of informal carers and a desirable outcome of contemporary healthcare policies. However, though there is an extensive body of research focusing on the course of dementia care trajectories, it remains unclear how stability of home-based care arrangements is constituted and what are the essential factors that influence this stability. This paper outlines a protocol of a systematic review that aims to address these gaps in knowledge.; Methods and Analysis: To theorise the complex phenomenon of stability of home-based care arrangements for people with dementia, we will conduct a meta-study. Meta-studies include three analytical components (meta-data analysis, meta-method and meta-theory) that are combined and finally culminate in an integrative knowledge synthesis. Originally, meta-study was designed to include qualitative studies only. To capture relevant contributions to our target phenomenon from all types of evidence, we will extend the original methodology and apply it to studies with qualitative, quantitative and mixed-methods designs and to (systematic) reviews. Eligible studies will be identified by systematic database searches (PubMed, CINAHL and PsycINFO), backward/forward citation tracking, snowballing and theoretical sampling. All identified studies will be screened against predefined inclusion criteria. The main analytical approach for all analyses is thematic synthesis. The meta-study will generate a more comprehensive understanding of dementia care trajectories and will be used to identify research gaps, develop future research questions and define relevant outcomes.; Dissemination: The findings of the meta-study will be published in a series of articles in peer-reviewed scientific journals and will be presented at national and international scientific conferences.; Prospero Registration Number: CRD42016041727.
Objective: The aim of this study was to explore the support needs of Dutch informal caregivers of patients with amyotrophic lateral sclerosis (ALS).; Method: Individual semi-structured interviews were conducted with 21 caregivers of ALS patients. Audio-taped interviews were transcribed and data were analyzed thematically. Result A total of four global support needs emerged: "more personal time", "assistance in applying for resources", "counseling", and "peer contact". Despite their needs, caregivers are reluctant to apply for and accept support. They saw their own needs as secondary to the needs of the patients. Significance of results ALS seems to lead to an intensive caregiving situation with multiple needs emerging in a short period. This study offers targets for the development of supportive interventions. A proactive approach seems essential, acknowledging the importance of the role of the caregivers in the care process at an early stage, informing them about the risk of burden, monitoring their wellbeing, and repeatedly offering support opportunities. Using e-health may help tailor interventions to the caregivers' support needs.
Background: Dementia is a globally prevalent disease that requires ongoing and increasing levels of care, often provided in the first instance by informal caregivers. Supporting transitions in informal caregiving in dementia is a pertinent issue for caregivers, care providers and governments. There is no existing systematic review that seeks to identify and map the body of literature regarding the review question: 'What happens for informal caregivers during transition to increased levels of care for the person with dementia?'; Methods/design: ASSIA, CINAHL+, MEDLINE, PsycINFO, SCIE, Social Service Abstracts and Web of Science will be systematically searched. Specialist dementia research libraries will be contacted. Reviews identified as relevant during the search process, their reference lists, and reference lists of accepted papers will be hand-searched. Qualitative, quantitative and mixed methods studies that seek to represent the experiences of, or examine the impact upon, informal caregivers during transition to increased formal care for the person with dementia will be eligible for inclusion. Synthesis will be segregated into qualitative and quantitative papers. Findings will be summarised, and the review will be prepared for publication.; Discussion: The review will seek to identify potentially vulnerable groups in need of support and as such, inform the practice of those offering support. It will also inform future research by highlighting areas in which current literature is insubstantial.; Systematic Review Registration: PROSPERO CRD42017067248.;
Dementia is one of the main causes of disability later in life. Interventions in support of patients with dementia aim at granting the highest level of independence in activities of daily living and at delivering the required facilities; formal and informal caregivers represent the interface between patients and health services. The aims of our study were to assess caregivers' perceived needs and to relate them to their own socio-cultural features and to patients' clinical characteristics. During three consecutive months, 50 caregivers of patients with dementia were interviewed about their needs in the assistance of subjects with dementia by means of three structured questionnaires (Caregiver Needs Assessment [CNA], Zarit Burden Inventory [ZBI], Neuropsychiatric Inventory-Questionnaire [NPI-Q]) and of two open-ended questions. Higher scores of CNA (suggestive of more needs) were associated with a major burden in caregiving and were related to a more severe behavioral and psychological profile of patients with dementia. ZBI was highly correlated with NPI distress score. Among caregivers, the children of patients reported more needs, particularly about information on disease and how to cope with it. CNA emerged as a complete and reliable instrument, with need for safety being the only item missing from the questionnaire and identified by means of the open-ended questions. Our results showed how the use of simple and brief instruments can increase the communication between health operators and caregivers and could thus improve the quality of formal and informal assistance.
Background: People with dementia and their informal carers often do not receive appropriate professional support or it is not received at the right time.; Objectives: Description and comparison of common pathways to formal community dementia care in eight European countries as a part of the transnational Actifcare project.; Materials and Methods: The German team was responsible for creating an individual case scenario as a starting point. The research teams in Ireland, Italy, the Netherlands, Norway, Portugal, Sweden, and the United Kingdom were then asked to describe a common pathway to formal dementia care by writing their own vignette using the provided individual case scenario.; Results: A transnational qualitative content analysis was used to identify the following categories as being the most important: involved professionals, dementia-specific and team-based approaches, proactive roles, and financial aspects. General practitioners (GPs) are described as being the most important profession supporting the access to formal care in all the involved countries. In some countries other professionals take over responsibility for the access procedure. Dementia-specific approaches are rarely part of standard care; team-based approaches have differing significances in each of the countries. Informal carers are mainly proactive in seeking formal care. The Nordic countries demonstrate how financial support enhances access to the professional system.; Conclusion: Enhanced cooperation between GPs and other professions might optimize access to formal dementia care. Team-based approaches focusing on dementia care should be developed further. Informal carers should be supported and relieved in their role. Financial barriers remain which should be further investigated and reduced.
Objective: To optimize personalized medicine for patients with hematological malignancies (HM), we find that knowledge on patient preferences with regard to information provision and shared decision-making (SDM) is of the utmost importance. The aim of this study was to investigate the SDM preference and the satisfaction with and need for information among newly diagnosed HM patients and their informal caregivers, in relation to sociodemographic and clinical factors, cognitive coping style, and health related quality of life.; Methods: Newly diagnosed patients and their caregivers were asked to complete the Hematology Information Needs Questionnaire, the Information Satisfaction Questionnaire, and the Threatening Medical Situations Inventory. Medical records were consulted to retrieve sociodemographic and clinical factors and comorbidity by means of the ACE-27.; Results: Questionnaires were completed by 138 patients and 95 caregivers. Shared decision-making was preferred by the majority of patients (75%) and caregivers (88%), especially patients treated with curative intent (OR = 2.7, P = .041), and patients (OR = 1.2, P < .001) and caregivers (OR = 1.2, P = .001) with a higher monitoring cognitive coping style (MCCS). Among patients, total need for information was related to MCCS (P = .012), and need for specific information was related to MCCS and several clinical factors. Importantly, dissatisfaction with the information they received was reported by a third of the patients and caregivers, especially patients who wanted SDM (χ2 = 7.3, P = .007), and patients with a higher MCCS (OR = 0.94, P = .038).; Conclusion: The majority of HM patients want to be involved in SDM, but the received information is not sufficient. Patient-tailored information is urgently needed, to improve SDM.
Informal caregivers play an increasingly important role in caring for aging Americans. Yet existing social policies that could support informal caregiving have experienced "policy drift," a failure to adapt to social risks that develop after policies are initially enacted. This article examines policy makers' success at updating seven major policies to address caregiver needs. It draws on an original data set of legislation in this area introduced between 1991 and 2006 (n = 96). Findings indicate that drift is more likely when policy updates are costly, lack support from members of majority parties in the House and Senate, and fail to generate bipartisan support.
As dementia progresses, caregivers increasingly have to manage the decline of food-related abilities with little outside information or input from support services The provision of food coping skills and knowledge can lessen the burden on caregivers. However, there is little research on caregivers' perspectives on food-related services. This paper reports on a qualitative study to investigate informal caregivers' experiences of, and views on, food-related information and support services in dementia. Twenty informal caregivers were interviewed and the transcripts from these interviews were analysed using both deductive and inductive thematic analysis. Four categories emerged. 'Direct food-related Information', covers written material, training, 'Direct food-related informal support': lunch clubs, 'Indirect non-food related formal support services' covers respite services and domestic help at home. Finally 'no services required' covers those who did not feel they needed any form of intervention due to confidence in managing food-related processes or having no change in dementia progression and food responsibility. Most caregivers will need different levels of information and support at different stages of dementia. It is necessary therefore to undertake ongoing individual assessment of food information and support needs.
Aims In occupational settings, burnout is a common response to chronic exposure stressors and has been frequently documented in formal caregivers (i.e. paid psychiatric staff). However, the literature is limited on reports of burnout among informal caregivers and particularly within early psychosis groups. The current study sought to investigate reports of burnout in carers of young adults treated within a specialist early psychosis service and links with key appraisals reported about the illness and coping. Methods Seventy-two carers completed the Maslach Burnout Inventory along with self-report measures of coping styles and illness beliefs. Results Seventy-eight per cent of carers reported high burnout in at least one of the three key burnout markers (i.e. emotional exhaustion, depersonalization or low personal accomplishment). Seven per cent of carers met full criteria for high burnout across all the three domains. A carer's belief about the negative consequences of the illness for themselves was a significant predictor of emotional exhaustion and depersonalization. Low personal accomplishment was linked to a carer's less optimistic beliefs about the illness timeline and fewer reports of adaptive coping. Conclusions The results provide preliminary support for the importance of asking carers in the early illness phase about their experiences of caregiving. Targeted assessment may serve as a helpful tool to identify and intervene with carers in need of additional support with stress management, use of adaptive coping strategies, and balanced recovery focused information about psychosis.
Purpose: To examine the impact of changes in an older person's frailty on the care-related quality of life of their informal caregiver.; Methods: Five research projects in the TOPICS-MDS database with data of both older person and informal caregiver at baseline and after 12 months follow-up were selected. Frailty was measured in five health domains (functional limitations, psychological well-being, social functioning, health-related quality of life, self-rated health). Care-related quality of life was measured with the Care-Related Quality of Life instrument (CarerQoL-7D), containing two positive (fulfilment, perceived support) and five negative dimensions (relational problems, mental health problems, physical health problems, financial problems, problems combining informal care with daily activities).; Results: 660 older person/caregiver couples were included. Older persons were on average 79 (SD 6.9) years of age, and 61% was female. Caregivers were on average 65 (SD 12.6) years of age, and 68% was female. Results of the multivariable linear and logistic regression analyses showed that an increase in older person's frailty over time was related to a lower total care-related quality of life of the caregiver, and to more mental and physical health problems, and problems with combining informal care with daily activities at follow-up. A change in the older person's psychological well-being was most important for the caregiver's care-related quality of life, compared to the other health domains.; Conclusions: Health professionals observing decreasing psychological well-being of an older person and increasing hours of informal care provision should be aware of the considerable problems this may bring to their informal caregiver, and should tailor interventions to support informal caregivers according to their specific needs and problems.
Background: This study aims to review the methodologies used to identify the needs, the existing needs assessment instruments and the main topics of needs explored among caregivers of patients with mild cognitive impairment to dementia.; Methods: MEDLINE, PsycINFO, The Cochrane Library and Web of science were searched from January 1980 to January 2017. Research studies in English or French were eligible for inclusion if they fulfilled the following criteria: quantitative, qualitative and mixed method studies that used instrument, focus group or semi-structured interviews to assess the informal caregiver's needs in terms of information, coping skills, support and service.; Results: Seventy studies (n = 39 quantitative studies, n = 25 qualitative studies and n = 6 mixed method studies) met the inclusion criteria and were included. Thirty-six quantitative instruments were identified but only one has been validated for the needs assessment of dementia caregivers: the Carer's Needs Assessment for Dementia (CNA-D). The main areas of needs explored in these instruments were: information, psychosocial, social, psychoeducational and other needs.; Conclusions: No instrument has been developed and validated to assess the needs of informal caregivers of patients with cognitive impairment, whatever the stage and the etiology of the disease. As the perceived needs of caregivers may evolve with the progression of the disease and the dementia transition, their needs should be regularly assessed.
Objectives: Few studies have examined what might enable or prevent resilience in carers of people with dementia. Consequently, there are limited insights as to how it should be understood, defined and measured. This creates challenges for research, and also practice in terms of how it might best be promoted. This study aimed to address these limitations and add new insights, identifying the essential features of resilience in dementia caregiving. Methods: A Delphi consensus study was conducted, consulting a multi-disciplinary panel of informal caregivers and experts with relevant professional expertise. Panellists rated the relevance of various statements addressing essential components of resilience; ‘adversity’ and ‘successful caregiving’ on a 5-point Likert scale. Based on the median and Inter Quartile Range, the most relevant statements with moderate consensus were proposed in Round 2 in which panellists selected up to five statements in order of importance. Results: Moderate consensus was reached for all statements after two rounds. Patients’ behavioural problems and feeling competent as a caregiver were selected by both caregivers and professionals as essential resilience features. Caregivers also emphasized the importance of social support, the quality of the relationship with their relative and enjoying spending time together. Professionals considered coping skills, experiencing positive aspects of caregiving, and a good quality of life of caregivers most relevant. Conclusion: The essential elements of resilience selected from multiple stakeholder perspectives can be used to select appropriate outcomes for intervention studies and give guidance to policy to support caregivers more effectively and better tailored to their needs.
Although the burden of caring is well described, the value of home as a potential place of wellbeing and support for informal caring networks when providing end-of-life care is not well recognised. Interviews and focus groups with 127 primary carers and members of informal care networks revealed their collaborative stories about caring for a dying person at home. Four themes emerged from the data: home as a place of comfort and belonging; places of social connection and collaborative caring; places of connection to nature and the non-human; places of achievement and triumph. When support is available, nurturing carer wellbeing may be best achieved at home.
Introduction: Multimorbidity is often combined with functional limitations among older adults. It is therefore important to ensure the built and social environment encourages older adults to safely age while maintaining independence. Previous findings have focused on the impact of the built environment as a barrier to an active lifestyle, but not specific to accessing community-based health and social care (CHSC). We propose to investigate the impact of patient and caregiver limitations on accessing care, including the impact of the built environment. Methods: Secondary thematic coding analysis was undertaken with 53 patient and 38 informal caregiver interviews from communities in Canada and New Zealand. Reported findings are from a broader research program titled, Implementing integrated Care for Older Adults with Complex Health needs (iCOACH). Older complex seniors were recruited for participation from a community primary healthcare team if they were greater than 50 years of age, and managing ongoing chronic conditions. Caregivers were unpaid informal carers of older adults. A specific thematic code about unmet need was extensively reviewed for examples related to the built environment and access to care. Results: Functional limitations hindered self-management at home as well as accessing CHSC. Attributes of the physical environment at home impacted the use of assistive devices, and impaired the ability to leave the home. Physical barriers within the social environment included the inability to use public transportation, access community programs, and conduct daily living tasks. Consequences from not being able to access supports included greater financial strain, social isolation, poor safety at home, lack of independence, and greater caregiver strain. Older adults appeared to be less impacted by access barriers when living in supportive housing settings, where on-site staff were available to provide direct support, or initiate referrals for additional services. Discussions: Experiences of older adults and informal caregivers highlighted access to care issues specific to the immediate and external physical environment, and examples of when support was efficiently provided. When considering how to best deliver services to people with complex care needs and their caregivers, it is important to consider how those services can be accessed. Conclusions: When services cannot be easily accessed, patients and caregivers may make critical trade-offs. To maintain independence and safety, it is important to design services which consider the adaptations and supports that are required to support older adults both at home, as well as the environment they have to navigate to access care.
Purpose Of Review: Informal carers play a key role in supporting patients living with breathlessness in advanced disease, but with considerable impacts on their own well being. The purpose was to review recent advances in our understanding of the caring role in refractory breathlessness, its impacts on carers, and interventions to support them.; Recent Findings: A systematic literature search resulted in 28 included articles that could be mapped to four broad areas of carer enquiry: the carer role (n = 6), role impact (n = 7), carer support (n = 11) and carer views (n = 4). Search terms focused on breathlessness, but few of the included articles were exclusively on breathlessness: most were disease-related, predominantly chronic obstructive pulmonary disease (COPD). There were a range of methodologies, including four systematic reviews; UK studies were most common.; Summary: Carers of patients with breathlessness take on a role characterized by uncertainty, largely unsupported by healthcare professionals (HCPs). HCP acknowledgement of these carers, their contribution and the impact of the caring role, is lacking. The patient-carer dyad should be considered the unit of care. Carer intervention should be individualized, supporting carers as clients and coworkers. There was a dearth of studies recruiting via primary care, focusing on conditions other than COPD and longitudinal work.
Objective: This study examined the moderating effect of domestic helpers on distress of offspring caring for parents with cognitive impairments and with or without behavioural problems.; Method: This secondary analysis of data involved 5086 Hong Kong Chinese adults aged 60 or older applying for public long-term care services from 2010 to 2012. All variables were measured using the mandatory Hong Kong version of the Minimum Data Set-Home Care 2.0.; Results: Regarding taking care of parents with cognitive impairments, 10.7% of offspring primary caregivers were aided by domestic helpers, 55.54% reported distress, and 75.70% lived with their parents. Assistance from domestic helpers reduced offspring caregiver distress if the offspring provided psychological support to parents (ratio of OR = 0.655, p < .05) and were not living with parents (ratio of OR = 1.183, p < .01).; Conclusion: These findings might suggest: a) the positive effects of audience on psychological responses to stress; b) caregiving is usually less stressful for informal caregivers not residing with care recipients. Conversely, having a domestic helper could add to caregiving distress if offspring caregivers live with their parents, most likely because offspring may witness difficulties that domestic helpers face in providing dementia care.
Objective: We evaluate whether strong associations between unmet need and work interruption observed among informal elder caregivers are explained by caregiver personal characteristics, caregiving situations, or diminished caregiver well-being.; Method: We analyze a proprietary survey of informal elder caregivers conducted by a single large U.S. employer ( N = 642 caregivers).; Results: Unmet need was about twice as common among those experiencing mild (29.79%) or severe interruption (35.00%) relative to those who did not interrupt work (16.87%). Although caregiver characteristics and aspects of caregiving situation show links to either unmet need or work interruption specifically, the association between unmet need and work interruption was not explained by these factors, or by caregiver well-being.; Discussion: Needs-related work interruptions may arise by other workplace processes, such as organizational culture, that should be measured and tested explicitly by future research.
There has been little research that provides a comprehensive account of the nature and aspects of information needs of informal carers. The authors have previously developed and validated a framework that accounts for major underlying states of information need. This paper aims to apply this framework to explore whether there are common demographic and socioeconomic characteristics that affect the information needs states of carers. A questionnaire about the information needs states was completed by 198 carers above 18 years old. We use statistical methods to look for similarities and differences in respondents' information needs states, in terms of the demographic and socioeconomic variables. At least one information needs state varies among carers, in terms of seven demographic and socioeconomic variables: the age of the patient(s) that they are caring for; the condition(s) of the patient(s) that they are caring for; the number of patients that they are caring for; their length of time as a carer; their gender; the country that they live in; and the population of the area that they live in. The findings demonstrate the utility of the information needs state framework. We outline some practical implications of the framework.
A landmark report on global carer priorities, featuring policies and programs that safeguard carers’ health and well-being, minimize financial stress, facilitate access to information, create flexible workplaces and support evidence-informed decision-making.
Legislation
Financial support
Working arrangments
Pension credits
Respite care
Information & training
Background and Objectives: Meeting the unique and changing needs of individuals living with Alzheimer's disease and their family caregivers can be very challenging given the dynamic and often unpredictable nature of the disease. Effective programs are available to help families manage the challenges they will face. Research Design and Methods: This article first describes the educational, information, and support needs of individuals living dementia and their family caregivers across all stages of Alzheimer's. Next, we describe the variety of services and program models targeted to the needs of individuals living with Alzheimer's disease or other types of dementia and their families. Results: These programs can help ensure that person- and family-centered care is maintained from time of first symptoms through end-of-life. Discussion and Implications: We end with our recommendations for maintaining person- and family-centered care through the provision of targeted information, education, and support to individuals and their families.
Introduction: Caring for stroke survivors may be burdensome with adverse consequences on caregivers' physical health. This study examined the prevalence of musculoskeletal symptoms and associated factors among family caregivers of stroke survivors in Nigeria. Methods: A hospital-based cross-sectional study involving 90 stroke caregiver and stroke survivor dyads was conducted. Data on the participants' demographics and post-stroke duration were obtained. Seven-day prevalence of musculoskeletal symptoms among the caregivers and level of stroke survivors' disability were respectively assessed using the Nordic Musculoskeletal Questionnaire and Modified Rankin Scale. Prevalence of musculoskeletal symptoms was presented as percentages while participants' characteristics associated with prevalence of musculoskeletal symptoms were examined using inferential statistics. Results: Mean (SD) age of caregivers and stroke survivors was 33.2 (10.7) years and 58.9 (9.7) years respectively. Majority of the caregivers were females (61.1%), and children of the stroke survivors (58.9%). Prevalence of musculoskeletal symptoms was 82.2%. The low back was the most affected body region (72.2%) followed by the upper back (40%) while musculoskeletal symptoms in the wrist was least prevalent (3.3%). Female caregivers, caregivers of female stroke survivors and spousal caregivers had significantly higher prevalence of musculoskeletal symptoms compared to other categories of caregivers. Only 5 (5.6%) caregivers had however received any training on safe care giving methods while only 21 (28.4%) caregivers with musculoskeletal symptoms had received treatment. Conclusion: With the high prevalence of musculoskeletal symptoms among family caregivers of stroke survivors, effective preventive strategies including training and education as well as timely access to treatment would be required.
Severe brain injuries can have dramatic consequences on family life, often changing rules and routines and fostering intense and prolonged caregiving duties. People affected by the injuries have to face relevant restrictions in their activities and a loss of independence. Thus, primary caregivers are often involved in their assistance, which can entail the help for self-care, movements and many activities of daily living. Furthermore, cognitive and behavioural symptoms can complicate communication, disrupt previous relationships and put an additional strain on all family members. Indeed, caregiving relationships take place in wider familial and societal contexts and are obviously influenced by previous characteristic of such relationships, as they were before the onset of the pathological condition. Therefore, a thorough examination of typical emotions, feelings and thoughts that can emerge during caregiving must be paralleled by an ecological and developmental perspective, in order to appraise the complexity of these cases and provide effective interventions. The present work aims to address such topics taking inspiration from a clinical case.
Introduction: Indian families are known for adopting the role of caregiver naturally when someone in the family falls ill to cancer. Although there were strong family structure and system existed here, now the changing family pattern and structure are challenging the role of cancer caregiving as well. Objective: This study analyses the life situation of caregivers of cancer survivors during the course of treatment and attempts to explore the areas of interventions for caregivers themselves. Methods: A descriptive research design was adopted for the study. A sample of 40 respondents was chosen for the study through purposive sampling technique. Results: Majority of the caregivers were females (75%) and fell into the age group of 35 to 45 years (65%). The education among the caregivers was varying between illiteracy to postgraduation. Majority of 95% of them adapted the dual role voluntarily and 85% of them felt that they were finding it very difficult to cope with the dual responsibility. About 60% of them felt that they would fail in their roles and were not satisfied with their performances dually. Conclusion: Adaptation to a dual role involves time factor and as part of care to the caregiver, a guided interaction and orientation towards managing these roles would help them better ways to adapt. Given the scarcity of support system on Indian settings, the caregivers who do dual role have huge responsibility and challenges to deliver quality caregiving and fulfill their other roles as well. It is the duty of the complete health care system to seriously take this into consideration and to act on it.
This article examines the experiences of family caregivers working with patients affected by overactive bladder ( OAB) in Hong Kong. Chronic diseases create physical and emotional burdens not only for patients but also for family caregivers, who often experience physical and emotional burnout and social impairment. Extensive literature has pertained to caregiver experiences in western and non-western settings; however, few studies have addressed the livelihoods and experiences of family caregivers of patients with OAB in ethnic Chinese communities. Because of the increasing prevalence of OAB worldwide, this study investigated the experiences of such caregivers in Hong Kong, examining their emotional and social needs. A qualitative research design with individual semistructured interviews was adopted, and snowball sampling was used to recruit 35 family caregivers who were referred by patients with OAB. The participants were interviewed individually from May to August 2013. A phenomenological approach was adopted in the data analysis. The data revealed that all participants had unpleasant experiences in caring for family members with OAB. A sense of powerlessness, helplessness, confusion and guilt, as well as grievances and social withdrawal, was prevalent, causing great physical and emotional suffering and subsequent physical and emotional burnout. These negative experiences were often caused by confusion regarding caretaking duties. The negative emotions of the participants and their family members also caused a lack of communication and mutual understanding about the disease, causing care-giving to be even more confusing and difficult. Furthermore, because of traditional Chinese cultural values and gender expectations, male participants experienced the triple burden of employment, domestic duties and care-giving. More holistic social and healthcare support services should be provided for care-giving family members of patients with OAB patients, empowering such caregivers to attend to family members and care for their own emotional well-being.
Accessible summary: Family members often support people with intellectual disabilities who display challenging behaviour. Family carers should be listened to and included in important decisions. We asked family carers how professional services had helped their relative with challenging behaviour. Family carers said that the care of people with intellectual disabilities who display challenging behaviour can be improved. Family carers sometimes felt left out of decisions and said that they needed more information. Listening to parent carers' experiences can help to improve the services that are provided to people with intellectual disabilities and their families.
Abstract: Background: There is relatively little published data that report the experiences and views of family carers of people with intellectual disabilities who display challenging behaviour who are prescribed psychotropic medication. Materials and methods: An online structured questionnaire was created by the Challenging Behaviour Foundation, a UK charity, and family carers of people with intellectual disability. Questions concerned the management of challenging behaviour and asked family carers about their experiences and views on the use of psychotropic medication. Responses were gathered between August and October 2016. Results are summarised using descriptive and inferential statistics and descriptive analysis of free‐text comments. Findings: Ninety‐nine family carers completed the survey. Family carers reported gaps in the holistic and proactive management of challenging behaviour. Whilst some felt involved in decisions around psychotropic medication prescribing, others described feeling marginalised and lacking information and influence. The decision to prescribe psychotropic medication evoked complex emotions in family carers and medication use was associated with mixed outcomes in those prescribed. Family carers identified areas of good practice and those areas where they believe improvements are needed. Conclusions: Psychotropic medication should be only one option in a multimodal approach to challenging behaviour, but this may not always be reflected in current practice. Greater effort needs to be made to ensure that services are equipped to provide optimum care and to embed shared decision‐making into routine practice.
Background: Although family caregivers provide a significant portion of health and support services to adults with serious illness, they are often marginalized by existing healthcare systems and procedures. Objective: We examine the role of caregivers in existing systems of care, identify needed changes in structures and processes, and describe how these changes might be monitored and assessed and who should be accountable for implementing them. Design: Based on a broad assessment of the caregiving literature, the recent National Academy of Sciences Report on family caregiving, and descriptive data from two national surveys, we describe structural and process barriers that limit caregivers' ability to provide effective care. Subjects: To describe the unique challenges and impacts of caring for seriously ill patients, we report data from a nationally representative sample of older adults and their caregivers (National Health and Aging Trends Study [NHATS]; National Study of Caregiving [NSOC]) to identify the prevalence and impact on family caregivers of seriously ill patients who have high needs for support and are high cost to the healthcare system. Measurements: Standardized measures of patient status and caregiver roles and impacts are used. Results: Multiple structural and process barriers limit the ability of caregivers to provide effective care. These issues are exacerbated for the more than 13 million caregivers who provide care and support to 9 million seriously ill older adults. Conclusions: Fundamental changes are needed in the way we identify, assess, and support caregivers. Educational and workforce development reforms are needed to enhance the competencies of healthcare and long-term service providers to effectively engage caregivers.
Aims and objectives: To explore the experiences of female spousal caregivers in the care of husbands with severe mental illness. Background: Family involvement in the care of patients with chronic illness is essential to provide a backbone of support for them. However, little is known about how female spousal caregivers are confronted with challenges while taking care of their husbands with severe mental illness. Design: An exploratory qualitative study. Methods: Fourteen female spousal caregivers of people with severe mental illness (defined here as schizophrenia, schizoaffective disorders and bipolar affective disorders) were recruited using purposive sampling and were interviewed using a semistructured in‐depth interview method. Data were analysed by conventional content analysis until data saturation was achieved. Results: Care of a husband with severe mental illness had a disruptive influence on the emotional relationships of the family and resulted in emotional detachment over time. Despite the caregivers’ struggle to protect their families, the lack of supportive resources caused emotional exhaustion. Caregiving tasks interfering with their many other responsibilities, along with being a reference for family matters, led to loss of self. Consequently, they experienced psychological distress because of the transition to a caregiver role without any supportive resources. Conclusion: Constant caring, without supportive resources, forced them to do various roles and manage other issues within the family. Being unprepared for a caregiving role led to the psychological distress of female spousal caregivers. Therefore, adequate information, education and supportive resources must be provided for spouses to facilitate their transition to caregiving roles. Relevance to clinical practice: It is necessary to pay close attention to the spousal caregivers’ own mental health problems while they care for their mentally ill husbands. Mental health professionals should adopt a new approach to the prioritisation and planning of policies that support both family caregivers and patients.
Background: In recent years, UK policy has increasingly recognised the importance of end-of-life care in dementia. While professional consensus on optimal palliative care in dementia has been reported, little is known about the perspectives of people with dementia and family carers. Aim: To compare the views of people with dementia and family carers of people with dementia (current and recently bereaved) on optimal end-of-life care. Design: Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed. Setting/participants: Participants comprised people with early stage dementia, living at home in the north-east of England (n = 11); and current and bereaved carers (n = 25) from six services providing end-of-life care in England. Findings: Seven areas were identified as important to end-of-life care for people with dementia and/or family carers. People with dementia and carers expressed the need for receiving care in place, ensuring comfort and a skilled care team. However, they disagreed about the importance of planning for the future and the role of families in organising care and future decision-making. Conclusion: Further comparison of our findings with expert consensus views highlighted key areas of divergence and agreement. Discordant views concerning perceptions of dementia as a palliative condition, responsibility for future decision-making and the practical co-ordination of end-of-life care may undermine the provision of optimal palliative care. Professionals must explore and recognise the individual perspectives of people with dementia and family carers.
Objectives: 1) To explore the association between family caregivers' involvement in managing care recipients' medications and their information-seeking behavior related to caregiving; and 2) to examine the sources used by caregivers when seeking information.; Methods: A retrospective analysis of cross-sectional data from 2 national studies, the 2011 National Health and Aging Trends Study (NHATS) and its supplement, the National Study of Caregiving (NSOC), was conducted. A nationally representative sample of community-dwelling adults (≥65 years of age) completed NHATS interviews, and a sample of their family caregivers participated in NSOC. Caregiver involvement in medication management was assessed with the use of 2 items asking caregivers if they helped keep track of care recipients' medications or helped with injecting medications. Information seeking was assessed with the use of an item asking caregivers if they ever looked for caregiving-related information.; Results: Out of 1367 caregivers interviewed, 54% reported helping to keep track of care recipients' medications and 8.7% assisting with injecting medications. Approximately 10.2% (n = 149) of caregivers reported seeking information to help them care for their care recipients. Caregivers sought information primarily on their own either through online resources or asking friends or relatives (73.3%). Sixty-four percent also sought information from medical providers or social workers. Adult children of caregivers were more likely to seek information for their older adult parents, based on bivariate analysis (P <0.01). In multivariable-adjusted models, caregivers who helped to keep track of medications had 2.30 (95% confidence interval [CI] 1.18 to 4.51) times higher odds of seeking information to help them to provide care for their care recipients. Caregivers helping with injecting medications were less likely to seek information (odds ratio 0.32, 95% CI 0.14 to 0.76).; Conclusion: Specific caregiver responsibilities, such as assisting with medication management activities, are associated with caregivers' information-seeking behavior related to care recipients' health. Health care providers, including pharmacists, can play an important role in helping caregivers to identify proper resources for information and in educating them about medication management.; Copyright © 2017 American Pharmacists Association®. Published by Elsevier Inc. All rights reserved.
Traumatic brain injury (TBI) is a family affair, affecting those with the injury and their families. Psychological distress, often measured as depression or depressive symptoms, is highly prevalent among family members. Predictors of depression in family members of civilians with TBI have been examined, but predictors of depression in family members of military veterans have received very little research attention and are poorly understood. To address the knowledge gap, this study explored factors related to depressive symptoms in family members of veterans in the United States, using an ecological framework. Baseline data from 83 family members were used. Family members with higher caregiver burden, presence of a veteran with posttraumatic stress disorder (PTSD), and greater financial difficulty experienced significantly more depressive symptoms. Findings suggest that efforts to support family members and decrease their depression should aim to reduce caregiver burden and financial difficulty, and help family members cope with veteran PTSD and TBI. Family-focused interventions are needed.
Background: Crisis resolution teams (CRTs) can provide effective home-based treatment for acute mental health crises, although critical ingredients of the model have not been clearly identified, and implementation has been inconsistent. In order to inform development of a more highly specified CRT model that meets service users' needs, this study used qualitative methods to investigate stakeholders' experiences and views of CRTs, and what is important in good quality home-based crisis care. Method: Semi-structured interviews and focus groups were conducted with service users (n = 41), carers (n = 20) and practitioners (CRT staff, managers and referrers; n = 147, 26 focus groups, 9 interviews) in 10 mental health catchment areas in England, and with international CRT developers (n = 11). Data were analysed using thematic analysis. Results: Three domains salient to views about optimal care were identified. 1. The organisation of CRT care: Providing a rapid initial responses, and frequent home visits from the same staff were seen as central to good care, particularly by service users and carers. Being accessible, reliable, and having some flexibility were also valued. Negative experiences of some referral pathways, and particularly lack of staff continuity were identified as problematic. 2. The content of CRT work: Emotional support was at the centre of service users' experiences. All stakeholder groups thought CRTs should involve the whole family, and offer a range of interventions. However, carers often feel excluded, and medication is often prioritised over other forms of support. 3. The role of CRTs within the care system: Gate-keeping admissions is seen as a key role for CRTs within the acute care system. Service users and carers report that recovery is quicker compared to in-patient care. Lack of knowledge and misunderstandings about CRTs among referrers are common. Overall, levels of stakeholder agreement about the critical ingredients of good crisis care were high, although aspects of this were not always seen as achievable. Conclusions: Stakeholders' views about optimal CRT care suggest that staff continuity, carer involvement, and emotional and practical support should be prioritised in service improvements and more clearly specified CRT models.
Objective: To describe bereaved caregivers' experiences of providing care at home for patients with advanced cancer, while interacting with home care services. Methods: Caregivers of patients who had completed a 4-month randomized controlled trial of early palliative care versus standard oncology care were recruited 6 months to 5 years after the patient's death. All patients except one (control) had eventually received palliative care. In semi-structured interviews, participants were asked about their experiences of caregiving. Grounded theory guided all aspects of the study. Results: Sixty-one bereaved caregivers (30 intervention, 31 control) were interviewed, including spouses (33), adult children (19), and other family (9). There were no differences in themes between control and intervention groups. The core category of Taking charge encompassed caregivers' assumption of active roles in care, often in the face of inadequate formal support. There were 4 interrelated subcategories: (1) Navigating the system-navigating the complexities of the home care system to access resources and supports; (2) Engaging with professional caregivers-interacting with visiting personnel to advocate for consistency and quality of care; (3) Preparing for death-seeking out information about what to expect at the end of life; and (4) Managing after death-managing multiple administrative responsibilities in the emotionally charged period following death. Conclusions: Caregivers were often thrust into assuming control in order to compensate for deficiencies in formal palliative home care services. Policies, quality indicators, and guidelines are needed to ensure the provision of comprehensive, interdisciplinary home palliative care.
Background: living with dementia has been described as a process of continual change and adjustment, with people with dementia and their families adopting informal strategies to help manage everyday life. As dementia progresses, families increasingly rely on help from the wider community and formal support. Methods: this article reports on a secondary analysis of qualitative data from focus groups and individual interviews with people with dementia and their carers in the North of England. In total, 65 people with dementia and 82 carers took part in the research: 26 in interviews and 121 in focus groups. Focus group and interview audio recordings were transcribed verbatim. A qualitative, inductive, thematic approach was taken for data analysis. Findings: the article applies the metaphor of scaffolding to deepen understanding of the strategies used by families. Processes of scaffolding were evident across the data where families, communities, professionals and services worked together to support everyday life for people with dementia. Within this broad theme of scaffolding were three sub-themes characterising the experiences of families living with dementia: doing things together; evolving strategies; and fragility and fear of the future. Conclusions: families with dementia are resourceful but do need increasing support (scaffolding) to continue to live as well as possible as dementia progresses. More integrated, proactive work is required from services that recognises existing scaffolds and provides appropriate support before informal strategies become unsustainable; thus enabling people with dementia to live well for longer.
Background: Family caregivers experience spiritual and existential concerns while caring for their terminally ill family members. Aim: To evaluate and synthesise studies on spirituality among family caregivers in palliative care. Design: An integrative literature review of peer-reviewed articles published between 2000 and 2016. Sample: Participants were family caregivers (parents, spouses, relatives or friends) caring for an adult (age>18 years) family member with a terminal illness in a palliative care setting. Results: Data from 26 published research papers were systematically analysed. Five themes were identified regarding spirituality and family caregiving: a close and meaningful connection, spirituality as a way of coping, spiritual needs and expressions among family caregivers, spirituality to transcend fears, and spirituality in family caregivers' decision-making. Implications for Practice: Nurses are encouraged to explore the spirituality and spiritual experiences of family caregivers to support their spiritual wellbeing while caring for their terminally ill family members.
Background: Delayed hospital discharge (also known as Alternate Level of Care or ALC) is a global health care quality issue with negative implications for people (e.g., functional decline) and the health care system (e.g., costly interruptions in hospital flow and procedures). ALC disproportionately impacts people with cognitive impairment, and insight into the needs and experiences of this specific sub population and their carers is lacking. The purpose of this study was to understand the hospital experience of carers (e.g., family members) of patients with ALC and cognitive impairment who were waiting for long-term care from the hospital. Methods: This is a qualitative descriptive study entailing 12 semi-structured interviews with 15 carers of patients with ALC from three hospitals in Northwestern Ontario. Interviews were conducted between October 2015 and February 2016. Two reviewers thematically analyzed the interview data. Results: Five core themes were identified from the interview data: patient over person, uncertain and confusing process, inconsistent quality in care delivery, carers addressing gaps in the system, and personalization of long-term care. Conclusions: Waiting for long-term care from the hospital is a stressful and uncertain time for family carers. ALC is an 'in-between' phase when patients and carers may be at their most vulnerable yet receive the least care from the formal care system. Carers provide critical insight into the needs and behaviors of patients as well as processes that need to be improved to enhance their experience. Such insights will help health systems internationally as they grapple with the issue of ALC whilst trying to optimize engagement with patients and their families.
Background: Previous work shows that more affluent patients with cancer are more likely to die at home, whereas those dying from non-cancer conditions are more likely to die in hospital. Family caregivers are an important factor in determining place of death. Aim: To investigate associations between family caregivers' household income, patients' access to specialist palliative care and place of patients' death, by level of personal end-of-life care. Design: A cross-sectional community household population survey. Setting and participants: Respondents to the Household Survey for England. Results: One-third of 1265 bereaved respondents had provided personal end-of-life care (caregivers) (30%). Just over half (55%) of decedents accessed palliative care services and 15% died in a hospice. Place of death and access to palliative care were strongly related (p < 0.001). Palliative care services reduced the proportion of deaths in hospital (p < 0.001), and decedents accessing palliative care were more likely to die at home than those who did not (p < 0.001). Respondents' income was not associated with palliative care access (p = 0.233). Overall, respondents' income and home death were not related (p = 0.106), but decedents with caregivers in the highest income group were least likely to die at home (p = 0.069). Conclusion: For people who had someone close to them die, decedents' access to palliative care services was associated with fewer deaths in hospital and more home deaths. Respondents' income was unrelated to care recipients' place of death when adjusted for palliative care access. When only caregivers were considered, decedents with caregivers from higher income quartiles were the least likely to die at home. Family caregivers from higher income brackets are likely to be powerful patient advocates. Caregiver information needs must be addressed especially with regard to stage of disease, aim of care and appropriate interventions at the end of life.
This commentary discusses the information needs of family caregivers and care recipients in the United States. Health sciences library services and outreach activities that support family caregivers include: (1) advocacy, (2) resource building, and (3) programming and education. Ethical issues related to the privacy and confidentiality of clients are outlined in the commentary for information service providers. Also, continuing professional education resources are identified to assist librarians in providing high-quality information services for this special family caregiver population, such as those designed by the National Library of Medicine (NLM) through the NLM 4 Caregivers program.
Background: Little is known about the experiences of family caregivers of hospitalized patients with confirmed methicillin-resistant Staphylococcus aureus/multiresistant gram-negative bacteria (MRSA/MRGN) diagnosis at the end of life. The study at hand is a subproject of an interdisciplinary cooperation project that aims at developing a patient-, family-, and team-centered approach in dealing with MRSA/MRGN-positive hospitalized patients in palliative and geriatric care. Objectives: The present study aimed to assess the individual effects of the patient's MRSA/MRGN colonization or infection and isolation measures on family caregivers. Design: Between April 2014 and September 2015, all known family caregivers associated with an MRSA/MRGN-positive patient from a palliative care unit, a hospital palliative care support team, and a geriatric ward were considered for study participation. A qualitative interview study with family caregivers and an additional focus group was conducted. Data were analyzed using the principles of Grounded Theory. Results: Family caregivers ( N = 62) raised suggestions regarding the provision of information and communication on the MRSA/MRGN diagnosis and hygiene measures from staff members and the consistency of hygiene procedures. Family caregivers requested not to be stigmatized or being disadvantaged due to the MRSA/MRGN diagnosis of the patient, and they wished to receive psychosocial and emotional support. Conclusions: Staff members and institutional stakeholders should be aware that family caregivers might be burdened and upset by positive MRSA/MRGN diagnosis and the required hygiene measures. The need for detailed and understandable information on MRSA/MRGN, adequate communication between staff members and family caregivers, and support for family caregivers should be of special attention in particular in end-of-life care.
Purpose: Family caregivers play a significant role in the care of cancer patients, especially in their end of life. Identifying and meeting the needs of these caregivers is essential to improving their quality of patient care. This study was conducted to identify the unmet needs of the caregivers of end-of-life cancer patients. Methods: A total of 18 semi-structured interviews were held with the family caregivers of end-of-life cancer patients using purposive sampling. The interviews were recorded, transcribed, and analyzed using qualitative content analysis. Results: The analysis of the data led to the formation of three main categories, including social needs, cognitive needs, and psychological needs. The social needs category comprised of the subcategories of support for care, effective communication and financial support. The cognitive needs category comprised of educational support and support in decision-making. The psychological needs category comprised of support for psychological trauma, preparation to confront the reality of the death of a loved one, and support for mourning. Conclusions: The family caregivers of end-of-life cancer patients take on the responsibility of many aspects of care for their patient, but many of their own needs remain unmet. The findings of this study can be used for healthcare policy planning and the development of palliative interventions, particularly for the family caregivers of end-of-life cancer patients.
Context: Family caregivers (FCGs) of hospice cancer patients face significant challenges related to pain management. Addressing many of these challenges requires effective communication between FCGs and hospice nurses, yet little empirical evidence exists on the nature of communication about pain management between hospice nurses and FCGs. Objectives: We identified ways in which FCGs of hospice cancer patients communicated their pain management challenges to nurses during home visits and explored nurses' responses when pain management concerns were raised. Methods: Using secondary data from audio recordings of hospice nurses' home visits, a deductive content analysis was conducted. We coded caregivers' pain management challenges and immediate nurses' responses to these challenges. Results: From 63 hospice nurse visits, 101 statements describing caregivers' pain management challenges were identified. Thirty percent of these statements pertained to communication and teamwork issues. Twenty-seven percent concerned caregivers' medication skills and knowledge. In 52% of the cases, nurses responded to caregivers' pain management challenges with a validating statement. They provided information in 42% of the cases. Nurses did not address 14% of the statements made by caregivers reflecting pain management challenges. Conclusion: To optimize hospice patients' comfort and reduce caregivers' anxiety and burden related to pain management, hospice nurses need to assess and address caregivers' pain management challenges during home visits. Communication and educational tools designed to reduce caregivers' barriers to pain management would likely improve clinical practice and both patient- and caregiver-related outcomes.
OBJECTIVE The aim of this descriptive study was to determine challenges experienced by and quality of life of relatives of cancer patients requiring palliative care at home. METHODS This research was conducted with the relatives of patients hospitalized in the palliative care service. Data collection tools used in the study were the "Questionnaire to Assess Challenges of Home Care Providers" and the "Caregiver Quality of Life Index-Cancer Scale" (CQOLC). RESULTS Mean age of the caregivers was 44.4±13.2. Of them, 50% were women. Of the women, 61.7% were housewives. Of all caregivers, 75% had difficulty fulfilling their responsibilities, 53.3% experienced problems in maintaining family relationships, 96.7% did not utilize home care services, and 43% did not receive information about home care. The caregivers also had trouble managing the following issues: pain (80%), nausea/vomiting (70%), defecation (56.7%), and mobility (35%). Mean CQOLC score of the caregivers was 49.7. Mean score on subscales of the CQOLC was 21.58 on the burden subscale, 39.7 on the disruptiveness subscale, 57.7 on the financial concern subscale, and 116.1 on the positive adaptation subscale. Respondents' quality of life was generally low. CONCLUSION Palliative care team should be aware of the needs of caregivers and provide support. Expanding the scope and content of palliative and home healthcare services, improving the quality of these services, and organizing well-educated teams in this branch will better meet the needs of patients and their caregivers and promote their quality of life.
We examined psychological parameters in family caregivers of palliative cancer patients before and after the death of the patients. Caregivers’ data about depression and anxiety (Hospital Anxiety and Depression Scale), quality‐of‐life (Short Form‐8 Health Survey), and social support (Oslo Social Support Scale) were collected at the beginning of home care (t1) and 2 months after the patient had died (t2). Regression models were employed to examine factors related to depression and anxiety in the bereaved caregivers. We interviewed 72 relatives, who were the primary caregiver of a patient. One‐third (31.9%) of caregivers had high anxiety levels and 29.2% had high depression levels (t1, cut‐off = 10). At t2, anxiety and depression had decreased significantly. There were no changes in quality‐of‐life over time. At both points of assessments, quality‐of‐life was lower than in the general population. Relevant factors for higher anxiety and depression in the bereaved caregivers were high levels of distress at t1, insufficient social support and low physical function. Bereaved caregivers were particularly depressed when they had been the spouse of the patient. Healthcare professionals should consider social isolation of caring relatives both during homecare and afterwards. Thus, it seems to be important to routinely offer support to spouses.
Background: Carers are family members or friends who support people with a mental health problem without being paid. Carer involvement in mental health treatment has been consistently supported by research evidence and promoted by policies but its implementation rates are poor. Particularly when patients are treated in inpatient units, carers often report being left without information or being excluded from decisions about treatment. In this study we have explored, along with staff perspectives, views of patients and carers who had a recent experience of inpatient mental health care on how to improve the implementation of carer involvement in inpatient care. Methods: Sixteen focus groups were held with carers, patients and clinicians in London, United Kingdom. We included staff working in inpatient units and patients and carers who had experience of inpatient care in the last five years. Data from focus groups were analysed using thematic analysis. Results: Eighty six participants in total (31 service users, 22 carers and 33 clinicians) attended the focus groups. Participants identified that generally, carer involvement should happen as soon as possible after admission, although this may be challenging in some cases. Carer involvement should include receiving information, participating in decisions about care and discharge and receiving emotional support by staff. When carers are involved, their personal knowledge of the patient's condition should be utilised. Challenges to carer involvement may include problems with identifying carers during a mental health crisis, obtaining valid patient consent, sharing appropriate information, and contacting and engaging carers. Additionally, it was perceived that all the ward staff need to be actively engaged in order to make carer involvement happen and this cannot be left only to specifically trained clinicians. Conclusions: These findings identify basic components that all family interventions in inpatient units should have. Further studies are needed to explore how and if purposively designed clinical interventions can improve carer involvement in inpatient treatment and, consequently, patient outcomes.
As the older adult population continues to grow, the prevalence of chronic diseases is also increasing, leading to the need for novel ways of managing this large population of patients. One solution is to focus on informal caregivers. These informal caregivers already make a substantial contribution to our nation's healthcare finances and patient health outcomes. Caregivers also derive benefits from caring for their family member or friend; however, it is not uncommon for these individuals to experience negative health consequences, or what is often called 'burden of care.' Those called to care are not without their own burdens, and they must frequently make significant lifestyle adjustments that impact their own health. Therefore, for caregivers to be effective, caring for the caregivers must be a focus of medicine in the twenty-first century.
Background: Approximately one-third of people suffering from multiple sclerosis (MS) need long-term care by their families, however, we know little of their experiences. Exploring these experiences can be a guideline to improve the quality of care for MS patients. The goal of this study is to explore informal caregivers' experiences regarding care of MS patients. Materials and Methods: A qualitative content analysis method was used to conduct this study in 2014. The study participants were 23 informal caregivers of MS patients who were chosen by purposeful sampling from the MS association of Iran. Data was analyzed by content analysis. Results: The analysis resulted in the emergence of six themes and seventeen subthemes. The main themes were being plagued, mental health damage, being captive among obstacles, perception of the affected family, being an emotional supporter, and need to maintain the functional independence of the patient. Conclusions: The findings represent the mean of long-term care by informal caregivers of MS patients, as well as the needs and challenges of this relationship. The findings can serve to create a framework for developing nursing care processes and planning educational sessions and support programs for MS patients and their informal caregivers.
BACKGROUND: While providing physical, psychological, and spiritual care to their loved ones with cancer, family caregivers (FCGs) are physically and emotionally vulnerable to the tolls of caregiving. Patients and FCGs experience the uncertainty that comes with illness and treatment, its side effects, the lack of control, the emotional upheaval, the spiritual doubt, and the helplessness of advancing disease. OBJECTIVES: This study was conducted to better understand the quality-of-life needs of the FCG population, particularly those who encounter financial strain related to patients' cancer and treatment. METHODS: This qualitative study of FCG concerns was conducted in association with a randomized trial of an FCG support intervention. Twenty FCGs of patients with solid tumor cancers were interviewed in person or via telephone for this study. The FCG version of the City of Hope quality-of-life tool, which consists of four domains of well-being (physical, psychological, social, spiritual), was applied to the content analysis of interviews. FINDINGS: Care for FCGs is needed across all quality-of-life domains.
Background: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. Aim: To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Design: Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. Setting/participants: A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. Results: The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p < 0.001). Conclusion: Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers.
This consumer-led research investigated the client experiences and the individual and community benefits of a community-based cancer support service operating in a regional setting. The study included cross-sectional surveys, focus group discussions and key-informant interviews. In total, 114 clients, 28 carers and 20 therapists were surveyed; three client focus groups were conducted and five directors and staff were interviewed. For many clients and carers, the warm welcome experienced at first contact sets the tone for a long-term association with the organisation. The feeling of being cared for extends to the broader community and living with cancer becomes more than survivorship. Integral to the organisational model are opportunity (second-hand) shops that enable subsidised complementary therapies and other services, offer a way of giving back and assist disadvantaged community members. The organisational model has benefits, not only for people living with cancer and their families, but also for the wider community.
Background: Transcatheter aortic valve implantation (TAVI) is the treatment of choice for frail, older adults with severe symptomatic aortic stenosis. Although research about long-term clinical outcomes is emerging, there is limited evidence from the perspectives of patients and family caregivers on their perceived benefits and challenges after TAVI. Aims: The aim of this study was to describe older adults and family caregivers’ perspectives on undergoing TAVI at one year post-procedure. Methods: Qualitative description was the method of inquiry. A purposive sample of 31 patients and 15 family caregivers was recruited from a TAVI programme in western Canada. Semi-structured interviews were conducted with participants one year after TAVI. Data were analysed thematically. Results: All participants were satisfied with the decision to undergo TAVI. There were three central themes. First, recovery was experienced in the context of aging and comorbidities, which was shaped by patients’ limited options for care and post-procedure symptom burden. Second, reconciling expectations with reality meant that, for some patients, symptom burden remained prevalent and was also influenced by others’ expectations. Third, recommendations for recovery related to having information needs met, keeping informed of evolving care processes, and addressing individualised needs for support. Conclusions: The perspectives of participants provide a valuable contribution to the literature about undergoing TAVI. Clinicians need to be attentive to patients’ expectations of benefit and temper these with consideration of the individual’s broader health situation to provide treatment decision support. Patients and family caregivers also need adequate teaching and support to facilitate safe transition home given the shift towards early discharge after TAVI.
Objective: In December 2016, 66 health leaders from 14 countries convened at the Salzburg Global Seminar (SGS) to engage in cross-cultural and collaborative discussions centered on 'Rethinking Care Toward the End of Life'. Conversations focused on global perspectives on death and dying, challenges experienced by researchers, physicians, patients and family caregivers. This paper summarizes key findings and recommendations from SGS. Design: Featured sessions focused on critical issues of end of life care led by key stakeholders, physicians, researchers, and other global leaders in palliative care. Sessions spanned across several critical themes including: patient/family/caregiver engagement, integrating health and community-based social care, eliciting and honoring patient preferences, building an evidence base for palliative care, learning from system failures, and delivering end of life care in low-resource countries. Sessions were followed by intensive collaborative discussions which helped formulate key recommendations for rethinking and ultimately advancing end of life care. Results: Prominent lessons learned from SGS include learning from low-resource countries, development of evidence-based quality measures, implementing changes in training and education, and respecting the personal agency of patients and their families. Conclusion: There is a global need to rethink, and ultimately revolutionize end of life care in all countries. This paper outlines key aspects of end of life care that warrant explicit improvement through specific action from key stakeholders.
This feasibility study aimed to identify and address the support needs of family carers (FCs) of people living with dementia and to assess whether the use of the Carer Support Needs Assessment Tool (CSNAT) intervention in home‐based care was acceptable and relevant to FCs. The CSNAT intervention comprised two FC support needs assessment visits, 7 weeks apart, plus associated actions addressing prioritised needs by the Client Care Advisors of a community care service in Western Australia in 2015. Telephone interviews were conducted with FCs on their experience using the CSNAT at the end of the intervention. Twenty‐one FCs were involved in the intervention and 15 of them completed the feedback interviews. Care recipients had moderate to severe dementia. The top five support needs reported by FCs were: having time to yourself in the day; knowing what to expect in the future; practical help in the home; looking after your own health and dealing with your feelings and worries. Three themes summarised their experience: a straightforward structured approach; awareness, acknowledgement and acceptance of their situation; and provision of support. FCs appreciated the opportunity to be heard and acknowledged, to have their practical and psychosocial support needs facilitated, to identify what is important to them and to receive a response in a timely manner. The CSNAT approach offered a structured carer‐led, person‐centred, supportive intervention that facilitated discussion between the family carer and the service provider about support needs and strategies to address them.
Family carers have a central role in the care and support of people with MND and face the challenges of the disease from diagnosis to progression and the multiple losses of MND, but their support needs are often neglected. This study aimed to investigate the experiences of family carers at the time of diagnosis and their satisfaction with receiving the news. An anonymous postal survey was facilitated by all MND Associations in Australia (2014) and 190 family carers completed the questionnaire. The questions centred on the SPIKES protocol for communicating bad news. Two-thirds of family carers rated the skills of their neurologists as above average and were satisfied with the delivery of the diagnosis, in terms of having a significantly longer consultation time, the neurologist being warm and caring, satisfaction with the amount and content of information they received and relevant supports, and a plan for following up support. Conversely those who rated the neurologist's skills as below average commented on the difficulties they encountered and the long term emotional stress engendered by poor communication. The study emphasises previous research that suggested that neurologists may require education and training in communicating the diagnosis and this should include family carers as a vital member in MND care.; Copyright © 2016 Elsevier B.V. All rights reserved.
Introduction: Stroke causes disability that affects the life of patients, their relatives and the society in general. Global healthcare policies, suggest the sooner possible discharge of stroke patients from hospitals, but the transition to home is a stressful experience for family caregivers who are suddenly faced with the responsibility of homecare provision. Sufficient international evidence suggest that a pre-discharge educational program for preparing family caregivers could lead to better care, less complications and better quality of life, but Cyprus still do not provide such a program. Objectives: To challenge the current healthcare practices regarding the care of elderly patients with stroke and to propose an innovative training program that will be provided by the nurses during the pre-discharge period to family caregivers. Methodology: The proposed innovation is discussed around an overview of the international literature regarding the family caregivers' education in the improvement reforms that are being pursued with the new national health system of Cyprus. Additionally, it is suggested that the Ministry of Health should create discharge services of elderly stroke patients in each hospital with the creation of a Discharge Coordinator role, who could coordinate the proposed innovation, while he/she could also inform staff on how to provide the training program to family caregivers.discharge planning and the Lewin's change theory, since the development and implementation of the innovation as a whole is based on this theory. Results: International literature highlights that family caregivers have a diversity of responsibilities at home but also unmet training needs. If these needs are not met, they may cause burden to caregivers, thus impeding their capacity to provide safe homecare to patients. Considering the significance of post-discharge homecare to the elderly patients with stroke, a proposed training program was designed for family caregivers, in an effort to motivate nurses in Cyprus to provide this preparation. Conclusions and recommendations: An attempt should be made as for the proposed innovation to be included in the future planning of the care of stroke patients as part of the improvement reforms that are being pursued with the new national health system of Cyprus. Additionally, it is suggested that the Ministry of Health should create discharge services of elderly stroke patients in each hospital with the creation of a Discharge Coordinator role, who could coordinate the proposed innovation, while he/she could also inform staff on how to provide the training program to family caregivers.
Purpose: To evaluate the degree of psychological distress in family caregivers of people with dementia. Design and Methods: A nonprobabilistic sample of 54 dyads (people with dementia and family caregivers) was recruited. A sociodemographic questionnaire, the Brief Symptom Inventory (BSI), and the Barthel Index were used for data collection. Findings: About half of the caregivers had significant levels of psychological distress. Caregivers showed high scores in some BSI dimensions: somatization, obsessive–compulsion, interpersonal sensitivity, anxiety, and paranoid ideation. Practice Implications: Alleviating the caregivers’ distress is likely to have positive effects on the overall health and capacity to care. Frameworks for providing palliative care to people with advanced dementia and support the caregivers would enhance the quality of care provided and may reduce the distress on the caregiver.
Background: This paper presents a qualitative study protocol focusing on older peoples' experience of recovery in acute care following hip fracture and also the experiences of their family or informal carers. There is limited evidence regarding older people and their relatives'/carers' experiences of recovery in acute care.; Aim: The study had two research questions. First what is the experience of older people who have suffered a fractured hip and secondly what is the relatives'/carers' experience of being alongside a person who has suffered a fractured hip?; Methods: The methodology chosen is phenomenology using the methods of interviewing and participant observation. It is planned to recruit a purposive sample of up to 40 patients including those with memory loss who have suffered a fractured hip, and up to 30 of their relative/carers, and up to 20 staff may choose to take part in the observation sessions. Analysis will be through drawing out units of meaning, bringing them together to form categories and themes of experience.; Conclusion: This study will extend knowledge by exploring what is important to patients and their relatives/carers in the early phase of recovery. Practice based principles that can be integrated into the hip fracture pathway and enhance future care will be developed from the study findings.; Crown Copyright © 2016. Published by Elsevier Ltd. All rights reserved.
Background: End-of-life care must be relevant to the dying person and their family caregiver regardless of where they live. Rural areas are distinct and need special consideration. Gaining end-of-life care experiences and perspectives of rural patients and their family caregivers is needed to ensure optimal rural care.; Aims: To describe end-of-life care experiences and perspectives of rural patients and their family caregivers, to identify facilitators and barriers to receiving end-of-life care in rural/remote settings and to describe the influence of rural place and culture on end-of-life care experiences.; Design: A systematic literature review utilising the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.; Data Sources: Four databases (PubMed, CINAHL, Scopus and Web of Science) were searched in January 2016, using a date filter of January 2006 through January 2016; handsearching of included article references and six relevant journals; one author contacted; pre-defined search terms and inclusion criteria; and quality assessment by at least two authors.; Results: A total of 27 articles (22 rural/remote studies) from developed and developing countries were included, reporting rural end-of-life care experiences and perspectives of patients and family caregivers. Greatest needs were informational (developed countries) and medications (developing countries). Influence of rural location included distances, inaccessibility to end-of-life care services, strong community support and importance of home and 'country'.; Conclusion: Articulation of the rural voice is increasing; however, there still remain limited published rural studies reporting on patient and family caregivers' experiences and perspectives on rural end-of-life care. Further research is encouraged, especially through national and international collaborative work.
Purpose: There is a paucity of information regarding health related quality of life (HRQoL) of young adults (YAs) with cancer and caregivers. Therefore, we characterize YA and caregiver perspectives on the impact of cancer and its treatment on HRQoL.; Methods: We conducted descriptive qualitative in-depth, semi-structured interviews with YAs receiving cancer care at an academic health center in Albuquerque, New Mexico (USA) and primary informal caregivers. The interviews, conducted from September through December 2015, focused on perspectives on the impact of the disease and its treatment in terms of physical and emotional effects, coping, and strategies to enhance HRQoL. We used an iterative thematic analysis approach to identify emergent themes and create a coding structure.; Results: We reached thematic saturation after interviewing 8 YAs and 8 caregivers. YAs and caregivers discussed cancer triggered challenges such as anxiety, depression, isolation, fear, and financial hardships. YAs and caregivers coped by maintaining positive perspectives, relying on friends and family, and prayer. Caregivers discussed how expectations for and experiences of a "good day" changed depending on their loved ones' stage of cancer treatment. YAs navigated challenges by focusing on activities and thoughts that provided meaning to their lives. YAs and caregivers suggested strategies to enhance HRQoL through patient/provider communication, support services, and decision making tools as potential mechanisms for grounding patient-centered interventions to improve cancer care.; Conclusions: Implications include the development and evaluation of informational and behavioral interventions tailored and targeted to address the pragmatic needs of YAs undergoing cancer treatment and informal caregivers.; Copyright © 2017 Elsevier Ltd. All rights reserved.
Family caregivers are the backbone of the long-term care support system within the home environment. Comprehensive caregiver support programs require collaboration and coordination within the system. A new public health concept, Vade Mecum, aims to harmonize and professionalize family caregiver support initiatives in geriatric care settings in the Euregion Maas-Rhine. Exploration of the new concept recently started in Germany to gain in-depth insight into current support and the needs of the geriatric care team and family caregivers. Within the context of an exploratory qualitative study, a participatory health research (PHR) strategy was applied to make optimal use of experience and knowledge from the system. Care professionals, engaged as co-researchers, were responsible for decisions about the research question, data collection methods and procedures of engaging family caregivers. A research team representing all professions within the geriatric department was formed. Research objectives were formulated and an appropriate mix of qualitative data collection methods consisting of interviews, focus groups and story-telling was chosen. Needs and expectations of the new concept, and practical solutions for involving family caregivers were discussed. A PHR strategy resulted in initiating a qualitative study in a geriatric care setting carried out by care professionals from the department. Knowledge was generated in a co-creative manner, and co-researchers were empowered. A comprehensive understanding of the system serves as a starting point for advancement of the new family caregiver concept.
Background: Patients with advanced diseases often experience deficient continuity of care. Although integrated palliative care promotes continuity of care, it is not clear how it can be optimized to improve continuity of care experiences.; Aim: To examine how relational, informational and management continuity of care are experienced by patients with advanced diseases and their family caregivers receiving care from several integrated palliative care initiatives in five European countries.; Design: We adopted a longitudinal qualitative study design including two interviews (interval 3 months) with patients and family caregivers focusing on how health care professionals responded to their needs. Interviews were audio-recorded and transcribed verbatim. Analysis involved a two-step qualitative content approach.; Setting/participants: A total of 22 integrated palliative care initiatives (established local palliative care collaborations) were selected in Belgium, Germany, Hungary, the Netherlands and the United Kingdom. We recruited 152 patients (63% cancer, 24% chronic obstructive pulmonary disease, 13% heart failure; life expectancy <1 year; mean age 68 years, 56% female) and 92 family caregivers (mean age 61 years, 66% female).; Results: Trusted relationships with a small number of key health care professionals to receive tailored care and easily access help were essential. Relational continuity was often deficient, especially with general practitioners. Although informational and management continuity was often lacking in care provision, collaborative integrated palliative care initiatives were related to consistent and coherent care.; Conclusion: Patients and family caregivers most likely experience continuity of care by having a small number of trusted health care professionals who are available, provide multidisciplinary care and regularly transfer information to all health care professionals involved. Optimizing continuity of care requires further integration of integrated palliative care initiatives with other health care professionals involved in the patients' care networks.
A total of 7,397 carers and former carers responded to Carers UK’s annual State of Caring survey between March and May 2018.
Only responses from the 6,828 people currently providing care who completed the survey are included in this report as it is designed to provide a snapshot of caring in 2018. However, Carers UK will be using the responses of former carers in other pieces of work throughout the year.
Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week.
Of respondents to the State of Caring Survey 2018 who are currently caring:
Background: The amputation of a foot or a leg is one of the complications caused by diabetes that creates fear. After the amputation, the patient becomes dependent on a caregiver, who is often not prepared for this new phase of life. Knowing the factors that influence care delivery in caregivers of amputee type 2 diabetes patients is important from an heuristic point of view, since very few studies have focused on this population. Objectives: This study analysed the predictors and moderators of quality of life, in caregivers of amputee patients due to type 2 diabetes. Methods: This study has a cross‐sectional design. All ethical standards were followed in the conduct of this study. The sample comprised 101 caregivers who answered the following instruments: Carer's Assessment of Managing Index, Burden Assessment Scale, Depression Anxiety Stress Scales, Revised Impact of Events Scale, Family Assessment Device, Family Disruption from Illness Scale and the Short Form Health Survey‐36. Results: The practice of physical activity, lower burden, better family functioning and less traumatic symptoms were predictors of better mental quality of life. Having no chronic disease and less physical symptoms predicted better physical quality of life. Duration of care moderated the relationship between traumatic symptoms and mental quality of life, but not with physical quality of life. Receiving help in caregiving moderated the relationship between traumatic symptoms and mental quality of life. The limitations of this study include the exclusive use of self‐report instruments and the fact that the caregivers who have participated in this study were those who accompanied the patient to the hospital. Conclusion: In order to promote physical quality of life, future intervention programmes should consider the presence of chronic disease in the caregiver and the duration of care, as well as the caregivers’ physical symptoms.
The NSW Carers Strategy 2014-2019 outlines the NSW Government’s vision and commitment to improving the lives of carers over the five-year period.
The NSW Carers Strategy is a five year plan to improve the position of carers in NSW. The Department of Family and Community Services (FACS) led development of the NSW Carers Strategy with assistance from carers, the Ministry for Health and Carers NSW.
Carers NSW supports the vision, the five focus areas and the actions and commitments in the NSW Carers Strategy 2014-2019.
The Strategy's vision is that:
The commitments in the Strategy are based on practical actions and approaches that will make a difference in the lives of carers, in the five focus areas of:
Over the next five years the NSW Carers Strategy will be implemented in collaboration with carers, the private sector, non-government organisations and government to achieve better and long lasting outcomes for carers. Carers NSW will play a key role in leading a number of the actions in partnership with other agencies.
This article is the second in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The second video can be accessed at http://links.lww.com/AJN/A75
Introduction: Most people in France die in the hospital, even though a majority would like to die at home. These end-of-life hospital admissions sometimes occur in the emergency setting, in the hours preceding death.; Objective: To understand the motives that incite main natural caregivers to transfer terminally ill patients at the end of life to the emergency department.; Methods: A qualitative study was performed among caregivers of terminally ill patients receiving palliative care and living at home, and who died within 72hours of being admitted to the emergency department of the University Hospital of Besançon, France.; Results: Eight interviews were performed; average duration 48minutes. The caregivers described the difficult conditions of daily life, characterised by marked anguish about what the future might hold. Although they were aware that the patient was approaching the end of life, the caregivers did not imagine the death at all. The transfer to the emergency department was considered as a logical event, occurring in the continuity of the home care, and was not in any way criticised, even long after death had occurred. Overall, the caregivers had a positive opinion of how the end-of-life accompaniment went.; Discussion: Difficulty in imagining death at home is underpinned by its unpredictable nature, and by the accumulation of suffering and anguish in the caregiver. Hospital admission and medicalisation of death help to channel the caregiver's anguish. In order to improve end-of-life accompaniment, it is mandatory to make home management more reassuring for the patient and their family.; Copyright © 2018 Elsevier Masson SAS. All rights reserved.
Purpose: The disease and treatment trajectory of patients with high-grade glioma is a burdensome period for the patients' closest relatives who become informal caregivers. Caregivers experiencing this demanding shift in role are at risk of developing symptoms such as depression. Few studies have explored the needs and experiences of bereaved caregivers, and there is lack of evidence-based practice. This study explores the perspectives of newly bereaved caregivers to patients with high-grade glioma on end-of-life caregiving and bereavement.; Methods: This qualitative exploratory study was composed of individual semistructured telephone interviews with bereaved caregivers (n = 8) to patients with high-grade glioma who deceased during participation in the mixed-methods Neuro-oncological Rehabilitation study. A thematic analysis was conducted following Braun and Clarke's guidelines.; Results: Four main themes were identified concerning the bereavement experience: (1) late-stage caregiving is comprehensive and taxing, (2) releasing the responsibility of the primary caregiving role, (3) feelings of grief and relief, and (4) suggestions for clinical practice.; Conclusion: Late-stage caregiving is a difficult and challenging experience at the end of an already burdening treatment trajectory. Caregivers prefer to actively share responsibility and practical tasks with professionals, family, and friends. The bereaved caregivers' key areas of concern indicate the need for additional research in advance care planning within neuro-oncology caregiving to establish evidence-based practice guidelines and recommendations
Background: The detection of elder mistreatment is emerging as a public health priority; however, abusive behaviors exercised by caregivers are little known and rarely detected among primary health care professionals. This study aims to estimate the prevalence of risk of abuse against community-residing elderly with moderate to severe dependency whose caregivers are relatives. In addition, we aim to describe the association between such a risk and socio-demographic variables, cognitive and dependency state of the victim, and the scale of the caregiver's anxiety, depression, and burden.; Methods: Cross-sectional study developed in 72 Primary Health Care teams from Barcelona, Spain. Participants were caregivers and their dependent care recipients (N = 829). Home interviews included the Caregiver Abuse Screen (CASE); self-reported abuse from care recipient; activities of daily living and cognitive state of the care recipient; anxiety and depression in caregivers and Caregiver Burden Scale. The relationship prior to the dependency, positive aspects of caregiving, and social support for the caregiver were also assessed. Multivariate analysis was performed using logistic regression with risk of abuse as dependent variable.; Results: Caregivers were mainly women (82.8%) with a mean age of 63.3 years. Caregivers and care recipients lived in the same household in 87.4% of cases, and 86.6% had enjoyed a good previous relationship. Care recipients were women (65.6%), with a mean age of 84.2 years, and 64.2% had moderate to severe cognitive impairment. CASE demonstrated a prevalence of 33.4% (95% CI: 30.3-36.7) of abuse risk by the caregiver. Logistic regression showed as statistically significant: caregiver burden (OR = 2.75; 95% CI: 1.74-4.33), caregiver anxiety (OR = 2.06; 95% CI: 1.40-3.02), caregiver perception of aggressive behavior in the care recipient (OR = 7.24; 95% CI: 4.99-10.51), and a bad previous relationship (OR = 4.66; 95% CI: 1.25-17.4).; Conclusions: Prevalence of risk of abuse is high among family caregivers. Our study has found risk factors in family caregivers that are preventable to an extent, namely: anxiety and feelings of burden. It is essential to become aware of these risk factors and their causes to intervene and help primary as well secondary prevention
This article is the third in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The third video can be accessed at http://links.lww.com/AJN/A76
This article is the fourth in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The fourth video can be accessed at http://links.lww.com/AJN/A78 .
Background: This study aimed to explore the psychological status and quality of life among primary caregivers of individuals suffering from various mental illnesses including early psychosis, chronic schizophrenia, depressive disorders, anxiety disorders and dementia.; Methods: A total of 350 primary caregivers with relatives seeking treatment at a tertiary psychiatric hospital were recruited for this study. Socio-demographic data was obtained and the brief version of the World Health Organisation Quality of Life instrument was used to assess caregiver's quality of life (QOL). Psychological status among primary caregivers was assessed using the General Anxiety Disorder - 7 item (GAD-7) and Patient Health Questionnaire - 9 item (PHQ-9) scales. Family Interview Schedule (FIS) was used to assess the impact of caregiving relating to social problems, interpersonal strain among family members, work related problems and financial difficulties as a result of their relative's illness. The socio-demographic and clinical correlates of QOL, PHQ-9 and GAD-7 were examined using multiple linear and logistic regression analyses. Associations between QOL domains and psychological status was examined using multiple linear regression analyses.; Results: The mean age of the primary caregivers was 49.7 years (SD = 13.2), ranging from 21 to 82 years, with a preponderance of females (67.6%), aged 50-64 years old (45.7%). Majority were of Chinese ethnicity (57.5%), had secondary level education (43.1%), were married (65.2%), and employed (64.9%). 18.3% of primary caregivers had symptoms of depression (based on PHQ-9 cut-off point of 10 or greater) while 12.7% had symptoms of anxiety (based on GAD-7 cut-off point of 10 or greater). Multiple linear and logistic regression analyses revealed that primary caregivers aged between 35-49 years and 50-64 years, unemployed, living with others, providing care to those diagnosed with dementia and who had higher FIS scores were significantly more likely to report symptoms of depression whilst those who cared for their son/daughter were less likely to be associated with symptoms of depression. Primary caregivers who had lower education, were living with others, were single or divorced/separated, were unemployed and with higher FIS scores were associated with lower QOL domain scores. Those with symptoms of depression were significantly associated with low QOL across all four domains, whilst those with symptoms of anxiety were significantly associated with low QOL in the social relationships domain.; Conclusion: Psychological status of caregivers in the current study was associated with the various domains of QOL. In particular, caregivers' symptoms of depression were significantly associated with lower QOL across all four domains of QOL whereas symptoms of anxiety were associated with lower scores in the social relationships domain. The study suggests a need to provide caregivers with social support and psycho-education to improve the QOL as well as aid in developing healthy coping strategies.
This article is the first in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The first video can be accessed at http://links.lww.com/AJN/A74.
The grounded theory study from which this paper is drawn explored the experiences of partners and other long-term family carers living with, and supporting, a person with a spinal cord injury over long periods of time. Eleven (11) female carers with between eight and 33 years of living with, and supporting, a family member with a spinal cord injury were purposively recruited to the study. The study identified a number of key issues for long-term carers in this context. In this paper, the focus is on the extent to which longterm family carers perceived they were supported by health and social services. Findings revealed a significant need for practical and lifestyle assistance, including formal respite from familial and/or caregiving responsibilities when needed. Participants also sought out a range of health and social care services to address the loneliness, isolation, grief and loss, all of which can be involved in this experience. Participants revealed that their caregiver needs are usually not recognised by health service staff, and most expressed a desire for more recognition from health professionals for the important role they play in supporting the independence of the person in their care. The study also identified that participants tended to be more reliant on informal networks of support for practical assistance and other support. Findings on the experience, perceptions and support needs of family carers of people with lifelong disability provide valuable information of great relevance to rehabilitation practice.
Background: Americans are increasingly using social media (such as Facebook, YouTube, and Twitter) for health-related communication. Much of the previous research on social media and health communication has focused on Facebook groups related to a specific disease or Facebook pages related to an advocacy organization. Less is known about how people communicate about cancer on personal Facebook pages.; Objective: In this study, we expand upon previous research by examining how cancer caregivers use personal Facebook pages for cancer-related communication.; Methods: We examined themes in cancer-related exchanges through a content analysis of 12 months of data from 18 publically available Facebook pages hosted by parents of children with acute lymphoblastic leukemia (15 852 total posts).; Results: Six themes emerged: (1) documenting the cancer journey, (2) sharing emotional strain associated with caregiving, (3) promoting awareness and advocacy about pediatric cancer, (4) fundraising, (5) mobilizing support, and (6) expressing gratitude for support.; Conclusions: Building upon previous research documenting the increasing use of social media for health-related communication and support, our findings show that personal Facebook pages offer a platform for cancer caregivers to share their cancer-related experiences, promote advocacy and awareness, and mobilize social support.; Implications For Practice: Providers must recognize the importance of social media as a vehicle for support and communication for families of children with cancer. Nurses should educate parents on how to appraise information obtained through Facebook using evidence-based guidelines. Providers can encourage caregivers to use Facebook as a tool for communication, information, and support
Context: The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention. Objectives: This study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT) intervention during the caregiving period has affected bereaved family caregivers' perceptions of adequacy of support, their grief and well-being, and achievement of their preferred place of death. Method: All family caregivers who participated in a stepped-wedge cluster trial of the CSNAT intervention in Western Australia (2012-2014) and completed the pre-bereavement study (n = 322) were invited to take part in a caregiver survey by telephone four to six months after bereavement (2015). The survey measured the adequacy of end-of-life support, the level of grief, the current physical and mental health, and the achievement of the preferred place of death. Results: The response rate was 66% (152, intervention; 60, control). The intervention group perceived that their pre-bereavement support needs had been adequately met to a significantly greater extent than the control group (d = 0.43, P < 0.001) and that patients have achieved their preferred place of death more often according to their caregivers (79.6% vs. 63.6%, P = 0.034). There was also a greater agreement on the preferred place of death between patients and their caregivers in the intervention group (P = 0.02). Conclusions: The results from this study provide evidence that the CSNAT intervention has a positive impact on perceived adequacy of support of bereaved family caregivers and achievement of preferred place of death according to caregivers. The benefits gained by caregivers in being engaged in early and direct assessment of their support needs before bereavement reinforce the need for palliative care services to effectively support caregivers well before the patient's death.
Introduction: Community Based Primary Health Care (CBPHC) is positioned as the foundation of integrated health systems, intended to support broader goals of population health and health system sustainability. CBPHC moves beyond traditional primary care (a physician visit) to team based care that spans organizational boundaries (such as primary care clinics + community care services). At the core of CBPHC are patients and their informal carers (family and friends) who can inform ongoing reforms in this sector by sharing their experience, particularly in areas that require improvement. The objective of this paper is to share the unmet needs of patients and caregivers within CBPHC. Methods: This study is part of a broader programme of research called, implementing integrated care for older adults with complex health needs (iCOACH). Semi-structured interviews are being conducted with older patients with complex care needs and with unpaid, informal carers across multiple CBPHC sites in Canada (Ontario and Quebec) and New Zealand. Interviews captured the roles, characteristics and needs of patients and carers, and were audio-recorded and transcribed verbatim. Interviews were reviewed by multiple team members and a consensus codebook was created. The code "unmet need" was extracted from the patient and carer transcripts, and analyzed for core themes using an inductive approach. Results: Unmet needs culminated into three broad themes across patient and carer interviews: Accessing Care; Quality of Care; and Missing Care. Many patients accessed care within CBPHC, but the model itself tended to be spread across multiple settings and providers. Patients and carers also required access to services that were outside the CBPHC model. Challenges arose due to lack of transportation, out-of-pocket expenses, limited availability of assistive devices to support mobility, and long wait times. Quality of care and relationships were compromised if there was a language barrier, and when services were misaligned with the preferences of patients and carers. Components of care were often missing, such as respite care for carers, supports for instrumental activities of daily living (e.g., home maintenance and transportation), and supports to reduce social isolation. Conclusions: Due to the complex health and social needs of patients and carers, they often require access to multiple services and providers who are seldom situated under the same roof. Finding ways to integrate across organizational boundaries may reduce areas of unmet need. Furthermore greater attention to the social determinants of health within CBPHC may create a more holistic experience for patients and carers. Lessons Learned: CBPHC is intended to deliver holistic integrated care but when situated within a fragmented health care system, challenges for patients and carers persist. Limitations: Further comparisons need to be made between the unmet needs between patients and caregivers in Canada and New Zealand. Suggestions for future research: Next steps will include the development of a framework that describes the policy and organizational context, and provider configurations in each of the study jurisdictions. How these factors relate to different patient and carer needs and experiences, including areas of unmet need, will be explored to inform the development of person centered CBPHC models.
Background: Health professionals commonly underestimate caregiver needs for information about palliative care, death and dying and may feel poorly prepared to discuss these issues. Few studies have sought caregiver perspectives of these communication practices. Aim: To explore caregiver perspectives on communication about death, dying and the introduction to palliative care, with a view towards a series of caregiver-informed recommendations for use in clinical practice. Design: Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Setting/participants: Purposively sampled, English-speaking, adult caregivers of people with advanced cancer (n = 25) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Australia. Results: Caregivers reported wanting routinely available written resources about palliative care, supplemented by conversations that are ideally staged overtime. Education about the tasks of palliative care should be separated from referral process, allowing time for gradual adjustment, and re-visiting discussion to enable patients and families to take some control in the process of transition. Once death is imminent, carers wanted health professionals to clarify how much they want to know about the dying process; provide spoken acknowledgement when death is close; include the words 'death' and 'dying'; use direct language, avoiding euphemisms; and communicate about death with patient present. Conclusion: This study is among the first to directly address caregiver perspectives of communication about death, dying and the introduction to palliative care. The recommendations derived from caregiver perspectives build upon existing guidelines and offer health professionals some preliminary considerations around how to undertake these important communication tasks in future.
A shared approach to improving the care and support for people with dementia, their families and carers receive following a diagnosis. The declaration sets out: a shared commitment to joint action across government, health, social care, the third sector and all other relevant partners; the ambition to deliver better quality post-diagnostic care; and the need to deliver integrated and effective services that meet the needs of people with dementia and their families and carers.
Good care is often positioned as a natural by-product of the widespread availability of good information (‘inform to care’). This paper contests this association through empirical investigation of the information–care relationship in the context of dementia care. It combines critiques of the ‘informatisation’ of care with insights from the epistemological dimension of care ethics to argue that information is better understood as ‘situated knowledge’ and that the relational practices of care involve the mobilisation and negotiation of different types of knowledge that are specific to caring relationships and contexts. The argument is illustrated through the three cases of caring relationships taken from a qualitative evaluation of an information and support course for carers of people with dementia. These cases highlight the specificity of caring relationships and the very different consequences of introducing new forms of knowledge into each relationship and provide evidence for the need for a paradigm shift where the idea of informing to care is replaced by a process of informing with care. In the former, information is understood as separate and outside of care, while nevertheless acting upon it to produce care; in the latter, information is understood as inextricably linked to care (with care) but not in any predetermined or uni-directional sense. The paper identifies key interlinked components of the ‘inform with care’ approach derived from the cases discussed.
This study examines the economic and psychological costs of care for family carers of people with dementia in Ireland. The analysis is based on an opportunistic survey of 98 carers of people with dementia. The article presents new findings on Irish carers' own perceptions of optimal care provision and the value of the care provided in monetary terms. Family carers in the survey provide an average of just under 12 hours of specified care each day to people with dementia. Many carers refer to the constant nature of care, with very high figures recorded for surveillance and supervision of the person with dementia. Irish caregivers spend considerably longer than they would wish caring for their relatives with dementia, allowing their mental health to suffer in the process. Carers would also like to be paid for the work that they do. Current arrangements for monetary compensation are, however, selective and therefore inadequate to meet the needs of most carers.
Purpose: Families provide crucial support, yet their own needs often go unrecognised and, as a consequence, remain unmet. The purpose of this study was to evaluate a newly developed supportive intervention for family members of patients with lung cancer.
Materials and methods: A consecutive convenience sample of 25 family members of people with lung cancer received an individualised supportive intervention from a support nurse over a period of 12 weeks. This involved in-depth assessment followed up with a tailored plan of ongoing support to address informational, emotional, social and practical needs. A concurrent mixed method design explored perceptions and outcomes of those receiving the intervention and assess its appropriateness, acceptability and feasibility. Data were collected through a semi structured telephone interview with family members, and support nurses maintained a contact log. A questionnaire addressed emotional well-being [general health questionnaire (GHQ-12)], quality of life [quality of life family version (Family QoL)] and needs for care [family inventory of needs (FIN)]—at baseline and week 12.
Results: Family members perceived they had derived benefit from the intervention. Certain elements clearly emerged as important for participants, including being listened to by someone who could facilitate emotional expression, being provided with individually tailored information and receiving practical help and advice. Outcomes mapped to five main areas: information needs, communication between family members, emotional well-being, being supported and facilitating family member’s role. There was a trend for more needs to be met and quality of life and emotional well-being to improve at week 12.
Conclusion: This study has demonstrated that a supportive intervention for family members of patients with lung cancer can be delivered to good effect by experienced cancer nurses. The active components of the intervention have been distinguished and provide the basis for development of a larger sufficiently powered trial.
The article reviews the report "National Mental Health Development Unit 2010" highlighting the importance of involving carers particularly in crisis resolution and home treatment teams (CRHT), in managing medicines during a mental health crisis. The authors note the report's recommendation of developing training packages to help carers understand issues and enhance their understanding of mental health conditions and treatment options. They also recommend investigating the needs of young carers.
Little attention has been paid to the immense struggles facing disabled people and their caregivers as they try to plan their long-term futures. This book sets out practical ways to maximise future care options for such community care user groups. It focuses on the priorities of older caregivers and people with learning disabilities to give numerous suggestions for increasing control people have over their affairs and links these to central legislation and entitlement issues. The book will be invaluable to professionals and academics who work with families tackling pressing future care decisions.
This article draws on research with children who provide care for parents with serious mental health problems and signals ongoing research that uses photographic participation methods with these groups of vulnerable children. The intention of this article is to highlight the need to move away from popular and simplistic representations of children with caring responsibilities (young carers) as victims of their parents’ illnesses, as ‘little angels’ whose caring work is condoned through rewards or as (exploited) informal domestic workers whose childhoods are inevitably compromised by the caring activity they undertake. Recommendations are made for generating deeper understanding about the lives and needs of children who are affected by parental impairment that is congruent with the thrust of current UK policy, Every Child Matters and the 2004 Children Act.
With a growing body of research on the situation of adult family caregivers in Germany, hardly anything is known about the situation of children who are involved into the care of their relatives. This literature study is part of a research project that intends to close this gap. Primarily, English literature of the last 15 years was analysed to gain insight into specific characteristics of young carers and their families. There is no standard definition of young carers. The prevalence of young carers has been underestimated for a long time; for Great Britain it is 1.5% of all children under the age of 18. Children provide caregiving tasks at any age, and the amount of their help grows with their age. The majority of young carers live in single-parent families, and the single parents are mostly mothers. More than half of the family members in need of care suffer from chronic illnesses that affect the body. There is a wide range of caregiving tasks described in the literature; young carers do the same as adult informal carers. However no uniform categorical system could be found, which makes comparisons between studies almost impossible. This might be due to a lack of a theoretical framework in most of the studies. Since it can be assumed, that children in Germany may become young carers as well, their situation needs to be studied under the specific circumstances of the German health care system.
This guide and action planning tool aims to assist staff working in the health service to implement carer related elements in various government guidance. This includes 'Caring for carers', 'National framework for mental health', 'National framework for older people', NHS plan 2001 and 'Valuing people'.
Family carers of people with mental illness provide an immense contribution to society in caring for mental health consumers. However, carers can experience substantial burdens and poor health outcomes themselves. Recognition of their needs for education and support has led to the development of a range of family education programmes. Throughout Australia, the Mental Illness Fellowship Australia offers the Well Ways programme, a group-based, family-to-family, education programme that provides information and aims to increase carers' capacity to care effectively for themselves, their families, and the mental health consumers. This paper describes a qualitative evaluation of an emotional support service piloted in a Well Ways programme in rural Queensland, Australia. The pilot service comprised individual emotional support offered to family carers attending the weekly Well Ways group education programme. Six of eight family carers who received the emotional support engaged in semistructured interviews exploring their experience of receiving the support. Three themes emerged from their experience: dealing with difficult times, connecting through shared experience, and exploring different options. Family carers found the emotional support beneficial, and reported that it enhanced their capacity to manage their own well-being, as well as their caregiving roles.
There has long been an interest in the United Kingdom about whether and how changes in family life affect support for older people, but nevertheless the consequences of partnership dissolution for late-life support have been little researched. Using data from the British Household Panel Study (1991–2003), this study investigated the longitudinal association between partnership dissolution and two types of support for 1,966 people aged 70 or more years: (i) informal support from children in the form of contacts and help (e.g. household assistance including care), and (ii) formal support from community care services (i.e. health visitor or district nurse, home-help and meals-on-wheels). The paper also examines the level of reported support among: (i) all parents aged 70 or more years and (ii) 1,453 unpartnered parents in the same age group (i.e. those lacking the most important source of support in later life: a spouse). We found diversity in the experience of partnership dissolution in the past lives of people aged 70 or more years. Patterns of support varied by the respondent's age, whether partnered, the timing and type of partnership dissolution, and by gender, having a daughter and health status. Overall, however, partnership dissolution did not show the expected detrimental relationship with later-life support. Health needs and increasing age were strongly associated with increases in contact and informal and formal help, regardless of family history.
There is a growing recognition that the carers of cancer patients require information. A key source of this information is the formal health care system that patients, and thus carers, encounter. However, the research literature suggests a lack of clarity on the part of service providers concerning the type, amount, timing and purpose of information for carers. This lack of clarity is reflected in the ways carers have been ‘tacked on’ to patients and thus are often treated as co-clients. That carers are also an active participants in the illness scenario is not always fully recognized, resulting in failure to provide appropriate information. Carers’ interactions with health service providers are complex and context bound, and entail potential tensions of allegiance in the arena of information exchange. This article suggests that the following research and practice is required: a clearer understanding of the informational needs of carers in variable situations, specific ways to address these needs, where carers ‘fit in’ to the health care system, and how processes of information exchange with carers can be improved.
Informal care is perceived to be the best option for people who require assistance to look after themselves. National and international studies of informal care have focused on the carer, not on the care provided, or the needs and experiences of the care recipients. In the present study, 55 people receiving informal care (21 males and 24 females, mean age = 67.6) were surveyed to determine the type of assistance that they receive, perceptions of the quality of their care, feelings about being looked after by a carer and their perceptions of the services which would be useful. A random sample of 531 households were selected as part of a larger study into informal care in the west of Ireland. A total of 98 carers were identified and 55 of the people they looked after were well enough to participate in the study. Over two-thirds of carers assisted with household chores (e.g. cleaning, preparing meals and shopping). Other activities which carers assisted with included keeping the person safe from household accidents (62%), personal care (42%), and dressing and undressing (31%). Whilst most were very satisfied with the quality of care, a minority reported dissatisfaction, and stated that their carer showed signs of anger and frustration. Common concerns related to the health of the carer, their safety when the carer is not available and the cost of being cared for. Financial support for the person receiving care and the carer were the main priorities for these individuals. The present study points to a need for greater involvement of care recipients in planning services relating to informal care, and support and access to health professionals for people receiving care. People receiving care are also concerned about the level of financial support for themselves and their carers.
Aims: To understand the perceptions, needs and experiences of patients with Idiopathic Pulmonary Fibrosis.
Background: Idiopathic pulmonary fibrosis is a progressive interstitial lung disease, with a mean life expectancy similar to some forms of cancer of 2–4 years from diagnosis. Unlike the cancer literature, which is rich with studies exploring the needs of their disease group, few publications exist on patient needs with this severe fibrotic lung disease.
Design: A Qualitative study which took place between 2007–2012.
Methods: Seventeen patients with a multidisciplinary team confirmed diagnosis of Idiopathic Pulmonary Fibrosis, with moderate to advanced disease severity and six of their informal carers were interviewed. An interview topic guide was developed by the researchers and service user group. The interviews were audio-recorded, semi-structured and took place at a regional respiratory and lung transplant centre in North West England. Interviews were transcribed verbatim and data analysed using Framework Analysis.
Findings: Three main themes were identified: ‘Struggling to get a diagnosis’; ‘Loss of the life I previously had’; and ‘Living with Idiopathic Pulmonary Fibrosis’. Patients reported struggling to get a diagnosis and coping with a life-limiting, rapidly progressive illness with no good treatment and few support structures.
Conclusions: There is an urgent need for a better understanding of the difficulties faced by people with Idiopathic Pulmonary Fibrosis and their carers. This can be used to develop better supportive care in the United Kingdom and ultimately improve the quality of life of these patients.
Background: Recent government policy has highlighted the needs of family and friends who provide support to mental health service users. Carers of assertive outreach (AO) service users may be particularly in need of support. However, little is known about their experiences and how services can support them. Aim: To explore the experiences of carers of individuals receiving an AO service. Method: Ten participants were interviewed using a semi-structured interview schedule. Interviews were transcribed and analysed using interpretative phenomenological analysis. Results: Participants were positive about the service they and their relatives received from AO teams. They described the service as flexible and responsive to their needs and they had developed close collaborative relationships with AO workers. AO workers were considered by carers to be an extension of their family system. AO interventions helped their relatives to regain independence and enabled participants to feel less burdened by their caring role, thereby improving the carer's quality of life. Conclusions: The unique way in which AO teams engage and work alongside service users and their families is greatly valued by carers.
Most health and social services professionals understand that carers play an important part in the care management of a person with an illness or disability, but there needs to be a greater recognition of the personal needs of carers. Roberta Ford gives a personal insight into the work of carers’ support centres.
The same as you?’ (2000) was the original 10-year programme designed to meet the needs of people with learning disabilities in Scotland. It was highly successful in shifting the balance of care to support more people to live in the community. This new 10-year strategy sets out a vision for improved partnership working to deliver better outcomes for people with learning disabilities, and their families and carers. It has more than 50 recommendations, most of which are aimed at health. The strategy also covers commissioning of public services; independent living; shifting the culture and keeping safe; breaking stereotypes; the needs of people with profound and multiple disabilities; criminal justice; and complex care. It includes good practice examples and case studies. Appendices include a glossary and weblinks to key organisations.
With the support of informal carers now recognised as a priority if people with significant needs are to live at home, Lesley Adcock examines the care given to an individual patient and her husband upon her discharge from hospital following a stroke injury.
Carers have an enormous amount of responsibility for the welfare and management of people with a mental illness in Britain, and many require help if they are to continue caring. Mental health nurses may be in a key position to offer support, but they are often unclear of what is required and how it should be delivered. Existing UK nurse-led psychosocial interventions for families often focus on the needs of the patient rather than the carer. This article describes a needs-led support service that has been designed for carers whose relatives are diagnosed with schizophrenia. It recognizes the importance of a collaborative partnership between carers and nurses. In 2000, 10 mental health nurses were trained to deliver this support to carers. An evaluation is currently underway. This article outlines the principles of the training programme and how it might enable nurses to meet the carers' needs.
Despite evidence of negative psychological sequelae and unmet needs, there are few evaluated interventions for informal caregivers in cancer and palliative care. The aim of this article is to debate the strengths and limitations of randomized controlled trials (RCTs) and other designs that can be used to evaluate the effectiveness of these interventions. Psycho-educational interventions are used as example for this debate article, as a number of studies of various designs evaluating this type of intervention have been published. Systematic searching in Medline and the bibliography of a relevant systematic review identified five RCTs, one pre-test/post-test study with a control group and six one-group pre-test/post-test studies of psycho-educational interventions for caregivers. The methodological strengths and weaknesses were assessed. RCTs are seen as the gold standard, but can have important limitations in the context of carer intervention research, including biased recruitment and low generalizability, problems with blinding and attrition. Pre-test/post-test studies with a control group may be more feasible and more generalizable. Their crucial limitation is selection bias. Before–after studies are compromised by additional specific biases and therefore are the weakest of all discussed designs. After analysing the strengths and weaknesses of the mentioned study designs, this paper presents strategies to address the limitations of RCTs evaluating psycho-educational interventions for carers in cancer or palliative care.
Often the needs of carers of people with dual diagnosis are ignored when they too may be doubly isolated and unsupported. Reports on a pilot two-day training workshop for carers in Camden and Islington Mental Health and Social Care NHS Trust, based on training provided for the trust's community and inpatient mental health staff. Discusses what both staff and carers found useful about the workshops.
Background Earlier research shows that nonemployed mothers of children with intellectual disability (ID) have lower wellbeing than employed mothers. This study explored why and to what extent these mothers did not participate in the labour market.
Method An in-depth interview was employed, and 18 working-age and nonemployed mothers in Taiwan who had an adult child with ID were interviewed in their homes between July 2009 and May 2010.
Results The mothers left the labour market at different stages of the family life cycle due to a lack of formal/informal support for the care needs of their young children, and the continuing intensive care needs of their child with ID. Mothers were officially nonemployed; however, to meet their family's financial needs, they were hidden workers in practice.
Conclusions Policies are required that support these hidden female workers, who are also lifelong carers, by offering financial support and affordable social services.
Stress and anxiety experienced by patients following myocardial infarction are well documented. Moreover, partners feel distress when they realize that they must assume responsibility for day-to-day care once the period of hospitalization is over. However, despite the trend towards early hospital discharge and the role which carers appear to be expected to undertake during the recovery of patients who have had cardiac surgery, few studies have been undertaken with this group outside the United States of America. This omission was filled by a descriptive survey with 60 patients and carers following cardiac surgery. Data were obtained during early recovery (1 week after hospital discharge) and 6 weeks later. The results indicated that carers assumed a heavy burden once the patient had left hospital and were less satisfied with the timing of discharge than the patients. Information provided by nurses was consistently rated more highly than information provided by doctors or physiotherapists but there was scope for increasing input with both groups. High levels of satisfaction with the information provided by health professionals were associated with lower scores on the Hospital Anxiety and Depression Scale. More qualitative, in-depth studies to explore the precise needs of patients and their carers are needed to ensure that in future both groups are better prepared.
Currently, around 56% of people die in hospital, 20% at home, 20% in nursing or residential homes and 4% in hospices. Yet surveys suggest that the majority of people would prefer to be supported to die in their own homes. We note the recent economic analysis which Marie Curie has produced of the potential cost benefits arising from a shift towards more patients dying at home and recommend that the Department assesses this carefully. We welcome the fact that the Government is considering legislation to grant extra rights to carers and recommend that it provides for a period of paid leave for them. We recommend that the Department reviews the place of domestic support within the spectrum of social care services and ensures that people’s needs for domestic help are adequately met. We were concerned to note the variation in the criteria for continuing healthcare between Strategic Health Authorities and recommend that national criteria for continuing care should be developed. Many of our witnesses drew our attention to disputes between health services and those providing personal social care for the terminally ill. Unseemly arguments about who should pay for different elements of a care package are especially abhorrent in palliative care, and we call for an integrated structure in the delivery of care. We also seek the inclusion of hospices or specialist care units in the ambit of the Community Care (Delayed Discharges etc.) Act to ensure that higher priority is not attached to other patients in dealing with delayed discharges.
Background: Many older people with neuropsychiatric disorders such as Alzheimer's disease and frontotemporal dementia suffer from sleeping problems and often show nocturnal restlessness. Professionals and informal carers face considerable problems in solving these problems. Attempts to diminish these problems with medication in a safe and responsible manner have proven hardly effective or not effective at all. Therefore, nowadays the focus lies more on non-pharmacological solutions, for example by influencing environmental factors. There are indications that treatment with low-frequency acoustic vibrations, that is Physio Acoustic Sound (PAS) therapy, has a positive effect on sleeping problems. Therefore we study the effectiveness of PAS therapy in demented patients with nocturnal restlessness.
Methods: In a randomized clinical trial, 66 nursing home patients will be divided into two groups: an intervention group and a control group. For both groups nocturnal restlessness will be measured with actiwatches during a period of six weeks. In addition, a sleep diary will be filled in. For the intervention group the baseline will be assessed, in the first two weeks, reflecting the existing situation regarding nocturnal restlessness. In the next two weeks, this group will sleep on a bed identical to their own, but with a mattress containing an in-built PAS device. As soon as the patient is lying in bed, the computer programme inducing the vibrations will be switched on for the duration of 30 min. In the last two weeks, the wash-out period, the measurements of the intervention group are continued, without the PAS intervention.During the total study period, other relevant data of all the implied patients will be recorded systematically and continuously, for example patient characteristics (data from patient files), the type and seriousness of the dementia, occurrence of neuropsychiatric symptoms during the research period, and the occurrence of intermittent co-morbidity.
Discussion: If PAS therapy turns out to be effective, it can be of added value to the treatment of nocturnal restlessness in demented patients. Non-pharmacological PAS therapy is not only safe and patient-friendly, but it can also be widely used in a simple and relatively inexpensive way, both in institutions such as nursing homes and residential homes for the elderly, and at home. Ultimately, this may lead to a decrease in the frequent and still common use of psychotropic drugs. In addition, care needs of demented patients also may decrease as well as the number of preventable admissions to care institutions.
Trial registration: Netherlands Trial Register (NTR): NTR3242
The number of carers in the community is rising, and the importance of general practice in providing supportfor them has been highlighted. Caring for a disabled friend or relative has been shown to be harmful to the health of the caregiver and changes in social and family structure have led carers to become isolated and more reliant on the formal support services. However, many carersfeel that GPs do not understand their needs, and in turn many GPs and nursesfeel that they lack the relevant resources and training to take a more proactive role. The shift from hospital to community-based care and the blurring of social roles of responsibility puts additional pressure on the carers and community services. However general practice is in the best position to help and there are many things that can be done by primary care teams, such as providing information about available support, benefits and local services, which would be appreciated by informal carers.
Objectives: To evaluate the impact of a combination of caregiver support group and memory training/music therapy in dementia patients on behavioural and psychological symptoms (BPSD) and caregiver burden compared to a control group.
Method: Eighteen patient-carer-dyads in the treatment group and 18 patient-carer-dyads as controls were studied in the setting of a memory clinic of a psychiatric university hospital over a period of 2 years. Controls were matched for age, gender, diagnosis, dementia severity, living arrangement and medication. The interventions were conducted once per week for 1 hour run by a clinical psychogeriatric team. Outcome measures were patients' cognitive and functional status as well as BPSD and caregivers subjective burden and depression measured by validated scales. Data were obtained 6, 12 and 24 months after baseline.
Results: There were no significant differences between the intervention and control group neither after 6, 12 nor after 24 months treatment.
Conclusions: The lack of a positive impact in alleviating caregiver burden or BPSD after intensive psychological interventions may result from extensive care in the routine clinical management including individual counselling for patients and families. The effect of ‘treatment as usual’ needs to be taken into account when comparing an intervention and control group, as well as the dosage of the intervention. Copyright © 2004 John Wiley & Sons, Ltd.
Background This paper describes a novel combination of inclusive methods to evaluate health and health promotion needs of service users (clients) with intellectual disability. Sixty centres provide disability services to over 900 clients with intellectual disability in the East Coast Area Health Board region of Ireland (population approximately 325 000). This is the first known triangulated large-scale approach to inclusive needs assessment of clients using regional disability services in Ireland.
Method The research included interviewer-directed surveys of 247 clients with intellectual disability (or advocates) and 180 clients with physical/sensory disability; focus groups for clients, service providers and carers; and a postal survey for centre managers. Modification of existing surveys was required for people with intellectual disability.
Results Fifty-six of 60 (93.3%) centres participated. The response rate at the client level was 98.8% (3/250 refusals). Health behaviours, likes and dislikes were well described by clients and advocates. Clients identified the need for more creative therapy, physical activity, relaxation therapy and social activities. Service providers and carers emphasized more the need for speech and language therapy, counselling, occupational therapy and physiotherapy.
Conclusions Inclusive research methods can produce useful outcome measures of the health promotion needs of those with disability. Triangulation is valuable, where clients, carers and service providers are all involved in the research process.
Lifelong couple Brian and Olive live in specialist supported accommodation. Brian has been Olive’s carer since she developed dementia. The housing complex where they live is managed as a community in which each individual is valued for the contribution they can make. The manager explains how important it is for carers as well as the person with dementia to maintain their individual identity and role as partner. The value of having a flexible, responsive individual care plan is also emphasised in the film. Richard, whose mother has dementia, explains how important it was for his mum and dad to be able to stay living together, even when his mum’s needs increased. The film concludes by stating that having well trained and selected staff is vital for achieving personalisation.
Background: Relatively little attention has been given to the effects of caregiving context on the experience of family members providing care for a person with dementia. This review aims to examine the impact of caregiving on the quality of the relationship between caregiver and care-recipient and the impact of the quality of the relationship between the caregiver and care-recipient on the caregiver's and care-recipient's wellbeing.
Methods: This was a systematic review. Fifteen quantitative studies were identified that examined the quality of the relationship between caregivers and care-recipients who had dementia, meeting the criterion of using a measure of relationship quality beyond a single item.
Results: The findings show that caregiving can have an impact on the quality of the relationship between caregiver and care-recipient. In addition, pre-caregiving and current relationship quality appear to have an impact on caregiver's wellbeing. The care-recipient's needs for help with activities of daily living and level of behavioural problems were found to influence the caregiver's perceptions of relationship quality.
Conclusions: Future research should examine both current and pre-caregiving relationship quality. A better understanding of the role of relationship quality in determining the outcomes of caregiving will aid the development of more effective interventions for caregivers.
The passing of the Carers (Recognition and Services Act) 1995 was a step forward in trying to ensure that people who provide informal care to disabled, sick or elderly relatives or friends are properly recognised and properly supported. The Carers Act gave informal carers the right to an assessment of their own needs, and this article is based on a study into the impact of the legislation in four local authority social services departments. It is argued that the vision of supporters of the Carers Act, namely to achieve real benefits for many carers, has yet to be realised. The analysis draws on Klein et al.’s (1996) framework of service rationing strategies to demonstrate that decisions about priority setting and different forms of rationing of social care took place at three different levels: national government, local authority and front-line practitioner. Evidence is presented to show that some carers chose to impose rationing on themselves by reducing their demands. The article concludes with comments on the implications of rationing decisions for policy and practice.
Purpose: Little is known about young caregivers of people with advanced life-limiting illness. Better understanding of the needs and characteristics of these young caregivers can inform development of palliative care and other support services.
Methods: A population-based analysis of caregivers was performed from piloted questions included in the 2001–2007 face-to-face annual health surveys of 23,706 South Australians on the death of a loved one, caregiving provided, and characteristics of the deceased individual and caregiver. The survey was representative of the population by age, gender, and region of residence.
Findings: Most active care was provided by older, close family members, but large numbers of young people (ages 15–29) also provided assistance to individuals with advanced life-limiting illness. They comprised 14.4% of those undertaking “hands-on” care on a daily or intermittent basis, whom we grouped together as active caregivers. Almost as many young males as females participate in active caregiving (men represent 46%); most provide care while being employed, including 38% who work full-time. Over half of those engaged in hands-on care indicated the experience to be worse or much worse than expected, with young people more frequently reporting dissatisfaction thereof. Young caregivers also exhibited an increased perception of the need for assistance with grief.
Conclusion: Young people can be integral to end-of-life care, and represent a significant cohort of active caregivers with unique needs and experiences. They may have a more negative experience as caregivers, and increased needs for grief counseling services compared to other age cohorts of caregivers.
Caregiving for family members with cognitive impairment is stressful and time consuming. Because of the attention needed to manage the memory and behavior problems of the care receiver, family caregivers have little time to attend to their own health needs. Most research related to the health of family caregivers has been conducted within a stress-illness framework. Fewer researchers have studied caregiver health from a health-promotion paradigm. The purpose of this study was to compare health-promoting self-care behavior in family caregivers with demographically matched noncaregivers and to investigate the mediational effect of health-promoting self-care behavior on the relationship between stress and well-being. Findings revealed that family caregivers scored significantly lower on all measures of health promotion, with the exception of Nutrition and Number of Medications, and significantly higher on Barriers to Health-Promoting Actions. Health-promoting self-care behavior acted as a mediator to reduce the effect of caregiver stress on general well-being.
Background : Palliative care encompasses physical, psychosocial and spiritual care for patients and caregivers. No population data are available on bereaved people who subsequently report that additional spiritual support would have been helpful.
Methods : In a population survey, a respondent-defined question was asked regarding ‘additional spiritual support’ that would have been helpful if someone ‘close to them had died’ an expected death in the previous five years. Data (socio-demographic [respondent]); clinical [deceased]) directly standardized to the whole population were analysed.
Results : There were 14,902 participants in this study (71.6% participation rate), of whom 31% (4665) experienced such a death and 1084 (23.2%) provided active hands-on (day-to-day or intermittent) care. Fifty-one of the 1084 (4.7%) active caregivers identified that additional spiritual support would have been helpful. The predictors in a regression analysis were: other domains where additional support would have been helpful (OR 1.69; 95% CI 1.46–1.94; p < 0.001); and being female (OR 3.23; 95% CI 1.23 to 8.33; p = 0.017). ‘Additional spiritual support being helpful’ was strongly associated with higher rates where additional support in other domains would also have been helpful in: all bereaved people (2.7 vs 0.6; p < 0.0001); and in active caregivers (3.7 vs 0.8; p < 0.0001).
Conclusion : People who identify that additional spiritual support would have been helpful have specific demographic characteristics. There is also a strong association with the likelihood of identifying that a number of other additional supports would have been helpful. Clinically, the need for additional spiritual support should open a conversation about other areas where the need for further support may be identified.
Objective: To compare the scores on the Relative Stress Scale (RSS) with those on the General Health Questionnaire (GHQ) and the Geriatric Depression Scale (GDS), and to establish a cut-off score for RSS in order to distinguish carers with symptoms of psychiatric disorders from those without.
Methods: One hundred and ninety-four carers of 194 patients suffering from dementia according to ICD-10 were included in the study. Burden of care was assessed by the 15-items RSS, and psychiatric symptoms by means of the GHQ-30 and the 30-items GDS. A case score above 5 on GHQ and above 13 on GDS were used to define carers with probable psychiatric morbidity. Sensitivity (SS), specificity (SP), accuracy and likelihood ratio for a positive test (LR+) were calculated for different cut-points of the RSS.
Results: Fifty-six percent of the carers had a GHQ score above 5, and 22% had a GDS score above 13. A two-step cluster analysis using 192 of the 194 carers, identified three groups of carers; a low risk group for psychiatric morbidity (LRG), 82 carers with GHQ ≤ 5 and GDS ≤ 13; a medium risk group (MRG), 69 carers with GHQ > 5 and GDS ≤ 13; and a high-risk group (HRG), 40 carers with GHQ > 5 and GDS > 13. The optimal RSS cut-off to distinguish between the LRG and the others was > 23 (SS 0.72, SP 0.82, accuracy 0.76, LR + 4.0), whereas the optimal cut-off to separate the HRG from the others was >30 (SS 0.74, SP 0.87, accuracy 0.84, LR + 5.7).
Conclusion: The RSS is a useful instrument to stratify carers according to their risk of psychiatric morbidity. Copyright © 2006 John Wiley & Sons, Ltd.
BACKGROUND: Understanding the health care experience of people with dementia and their caregivers is becoming increasingly important given the growing number of affected individuals. We conducted a systematic review of qualitative studies that examined aspects of the health care experience of people with dementia and their caregivers to better understand ways to improve care for this population.
METHODS: We searched the electronic databases MEDLINE, Embase, PsychINFO and CINAHL to identify relevant articles. We extracted key study characteristics and methods from the included studies. We also extracted direct quotes from the primary studies, along with the interpretations provided by authors of the studies. We used meta-ethnography to synthesize the extracted information into an overall framework. We evaluated the quality of the primary studies using the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.
RESULTS: In total, 46 studies met our inclusion criteria; these involved 1866 people with dementia and their caregivers. We identified 5 major themes: seeking a diagnosis; accessing supports and services; addressing information needs; disease management; and communication and attitudes of health care providers. We conceptualized the health care experience as progressing through phases of seeking understanding and information, identifying the problem, role transitions following diagnosis and living with change.
INTERPRETATION: The health care experience of people with dementia and their caregivers is a complex and dynamic process, which could be improved for many people. Understanding these experiences provides insight into potential gaps in existing health services. Modifying existing services or implementing new models of care to address these gaps may lead to improved outcomes for people with dementia and their caregivers.
Purpose: Supporting someone through chemotherapy can be emotionally and physically demanding. However, research has yet to establish the type of support carers require or the best way to provide this. This study tested the feasibility and acceptability of a complex intervention for carers that was co-designed by staff and carers of patients starting chemotherapy.
Methods: Forty-seven carers were recruited, randomised between the intervention (n = 24) and control (n = 23) groups. A questionnaire was completed pre- and post-intervention measuring knowledge of chemotherapy and its side effects, experience of care, satisfaction with outpatient services, coping and emotional wellbeing. The intervention process was evaluated by carers and healthcare professionals (HCPs) in focus groups.
Results: Recruitment to the study was unproblematic and attrition from it was low, suggesting the intervention and study processes were acceptable to patients and carers. Carers in receipt of the ‘Take Care’ intervention reported statistically significantly better understanding of symptoms and side effects and their information needs being more frequently met than carers in the control. Confidence in coping improved between baseline and follow-up for the intervention group and declined for the control although differences were insufficient to achieve statistical significance. There was no significant difference between the two groups’ emotional wellbeing. HCP and carer focus groups confirmed the feasibility and acceptability of the intervention.
Conclusions: The ‘Take Care’ intervention proved acceptable to carers and HCPs and demonstrates considerable promise and utility in practice. Study findings support the conduct of a fully powered RCT to determine the intervention’s effectiveness and cost-effectiveness.
A qualitative interview study was undertaken to determine the information and support needs of carers of adults who have Down's syndrome and dementia. The data were analysed thematically. Carers' information and support needs were seen to change at pre-diagnosis, diagnosis and post-diagnosis. Helping carers to manage the changing nature of the adult with dementia is seen to be an essential part of the health professional's role.
Carers can have a significant impact supporting people with intellectual disabilities to make healthy lifestyle choices. This study examines carers' training needs on diet and physical activity. A cross-sectional survey was undertaken of the knowledge and perceptions of carers supporting adults with intellectual disabilities. An interviewer administered questionnaire was used to examine carer knowledge of public health recommendations on diet and physical activity; perceptions of the benefits of healthy diets and physical activity levels; and the carer views on the barriers to change experienced by individuals with intellectual disabilities. Sixty-three carers took part in the study. They generally had a low level of knowledge around public health recommendations on diet and physical activity. Greater importance was attributed to the health benefits of diet than physical activity. Carers rated intrapersonal barriers to change within the person with intellectual disabilities as more important, than interpersonal or external barriers to change, with significant differences in perceived barriers relevant to diet and physical activity. Carers supporting adults with intellectual disabilities have significant training needs relevant to promoting healthy lifestyles. This highlights the opportunity to promote health improvement via the development, and provision, of effective training initiatives.
Aim. This paper reports a study exploring the impact of advanced heart failure on the lives of older patients and their informal carers.
Background. Prognosis is poor in heart failure, with more than a third of patients dying within 12 months of diagnosis, and end-of-life symptoms are distressing and poorly controlled. Although end-of-life care for people with heart failure has received increased attention in recent years, there are still few data on the impact of advanced heart failure on the lives of patients and their informal carers.
Methods. Focused interviews were conducted with 10 older people with advanced heart failure and their nominated informal carer identified from one district general hospital in the United Kingdom (UK). Joint interviews were conducted with patients and carers in their own home. Thematic analysis was used to identify themes and subthemes.
Findings. Heart failure affected all aspects of the lives of patients and carers and, in particular, curtailed everyday activities. Patients were very concerned about the ‘burden’ their illness placed on their carer, who in all cases was their partner, although carers did not conceptualize the situation in this way. The socially isolating influence of the condition on both patients and carers was compounded by lack of professional input, and confusion about diagnosis was evident. Concerns about the future were common and, although few participants reported having been explicitly told about their prognosis, many made realistic statements about their limited life expectancy.
Conclusions. This older cohort of people suffering from heart failure appears to have needs not unlike those of patients with ‘terminal diseases’. When people are diagnosed with more familiar terminal illnesses, in particular cancer, they are given ongoing explanations, reassurance and support. Similar professional input is needed for patients with advanced heart failure and their carers.
The social care system is widely seen as failing and it has long been clear that fundamental and lasting reform is necessary. Reform is made all the more urgent as an ageing population will mean rising demand for care and support. Projected changes in demographics, availability of support from carers, unit costs of care and other factors indicate that social care in its current form will struggle to meet people's needs. Longer life need not mean more time spent in ill health. Improving public health and developing interventions for long-term conditions could pay major dividends. The old-age "support ratio" (the relative numbers of working-age and older people) is not the most important factor in the likely future affordability of social care. Our society must not underestimate its ability to become more productive and wealthier, nor the contribution that older people will make to that. In this report the Health Committee looks at: the present social care system; meeting future demand and costs; shortcomings of the present social care system; Plans for reform; Achieving lasting reform; and The way forward.
The present article explores professional attitudes to family members supporting an older person newly diagnosed with dementia. It draws on professional perspectives derived from a series of 24 multidisciplinary workshops held in the UK, analysed using a typology developed by Twigg in 1989. The primary care workers' understanding of carers' needs and circumstances fitted best with Twigg's models of carers as resources and co-workers, but showed limited awareness of carers' responses and attitudes to caring. It is argued that professional assumptions about family members' roles when dementia is recently recognised among older people expand definitions of carers, but still confirm their instrumental role.
Outlines some important messages from a major project, carried out by Dementia Voice, to consult people with dementia and carers about the services they receive. The consultations were part of a larger project, funded by Devon social services, to help care agencies in Devon to develop guidelines for intermediate care for people with dementia.
This study addressed various groups of non-employed/employed and non-caring/caring women in Taiwan. Data from the 2006 National Taiwanese Women Survey (at age 16–64, n= 6,017) were analysed to determine whether there are differences in terms of well-being, as measured by self-rated health and family life satisfaction, between women who work and/or care and between different carer groups. Other factors associated with well-being of carers of young children (n= 1,697) were also analysed. The results showed that non-employed carers of disabled adults stood out as the most disadvantaged group. However, the importance of work has been replaced by support among carers of young children. This study suggests that unpaid carers, particularly carers of disabled adults who are non-employed, ought to be supported by policies. To improve carers' well-being, care–work reconciliation among working-age women needs to be included in the future care scheme in Taiwan.
This consultation seeks the views of interested parties on the draft Young Carers' (Needs Assessments) (England) Regulations to put into effect Section of the Children and Families Act 2014. A local authority must assess whether a young carer within their area has needs for support and, if so, what those needs are, if - (a) it appears to the authority that the young carer may have needs for support, or; (b) the authority receives a request from the young carer or a parent of the young carer to assess the young carer's needs for support. The draft regulations set out: the matters to which a local authority must have regard in carrying out a young carer's needs assessment; the manner and form of a young carer's needs assessment; the matters which a local authority must take into account when carrying out a young carer's needs assessment; and, the definition of the term 'whole family approach'. The consultation closes on 26 January 2015.
Informal carers make a vital contribution to the well-being of the people they care for or look after. Against the policy background in England, the purpose of this study was to explore the views of carers who are in contact with adult social care support services. A qualitative study with 31 carers, who were recruited via local authorities and carers' organisations, was conducted between April and July 2012 to collect data on carers' experiences and perceptions of their quality of life (QoL) with and without adult social care and support for themselves or the person they look after. Through framework analysis, three key themes were identified: (i) definitions of social care services ‘for’ the carer or ‘for’ care recipient and social care outcomes; (ii) carers' access to social care services; and (iii) the meaning and value of informal care. We find that carers' QoL is affected by social care support directed at carers and support directed at those they care for, as well as access to services, the experience of stigma in communities, and in how individual needs and preferences are considered when making decisions about care. While there is much to welcome in the direction of policy in England, this study has shown that there are some gaps in thinking around these areas that will need to be addressed if the lives of carers are to be improved.
Background: This study explored the personal experiences of family carers and residential care staff in supporting adults with intellectual disabilities through the process of bereavement.
Method: A semi-structured interview was used to interview 11 carers on their experience of supporting adults with intellectual disabilities through the process of bereavement. The transcripts were analysed using interpretative phenomenological analysis (IPA).
Results: A total of five superordinate themes were identified: (i) Factors making the experience difficult for carers, (ii) Factors that helped carers, (iii) Carers' perspectives on the responses of people with intellectual disabilities, (iv) Approaches to supporting people with intellectual disabilities and (v) Carers' perspectives on support.
Conclusions: Supporting people with intellectual disabilities through bereavement is an emotionally demanding task for carers. The support needs of carers need to be acknowledged and addressed in order to ensure that adequate support is available to people with intellectual disabilities following bereavement.
Presents various abstracts concerning palliative care. Views of terminally ill patients on the needs of their informal carers; Case series on peritoneal mesothelioma; Clonazepam for pain management in advance cancer; Symptoms of chronic heart failure.
AIM: To find out the reasons why carers might decide that they could not continue caring for a relative with dementia at home. METHOD: Semi-structured interviews with carers of relatives who have dementia, before placing their relatives into residential care and then again four months after that placement. N=4. RESULTS: Wandering, aggression, incontinence and physical dependency in people who have dementia are factors that might lead carers to consider placing their relatives into residential care; stress associated with Christmas can be another influencing factor. CONCLUSION: Carers looking after a relative who has dementia would benefit if the relative was provided with increased day care and home respite sitting services; services should be increased at Christmas; and support staff should be knowledgeable about the specific needs of people who have dementia and their carers.
The value of care provided by informal carers in Canada is estimated at $26 billion annually (Hollander et al., 2009). However, carers’ needs are often overlooked, limiting their capacity to provide care. Problem-solving therapy (PST), a structured approach to problem solving (PS) and a core principle of the Reitman Centre CARERS Program, has been shown to alleviate emotional distress and improve carers’ competence (Chiu et al., 2013). This study evaluated the effectiveness of problem-solving techniques-based intervention based on adapted PST methods, in enhancing carers’ physical and emotional capacity to care for relatives with dementia living in the community.
56 carers were equally allocated to a problem-solving techniques-based intervention group or a control arm. Carers in the intervention group received three 1 hr visits by a care coordinator (CC) who had been given advanced training in PS techniques-based intervention. Coping, mastery, competence, burden, and perceived stress of the carers were evaluated at baseline and post-intervention using standardized assessment tools. An intention-to-treat analysis utilizing repeated measures ANOVA was performed on the data.
Post-intervention measures completion rate was 82% and 92% for the intervention and control groups, respectively. Carers in the intervention group showed significantly improved task-oriented coping, mastery, and competence and significantly reduced emotion-oriented coping, burden and stress (p < 0.01–0.001). Control carers showed no change.
PS techniques, when learned and delivered by CCs as a tool to coach carers in their day-to-day caregiving, improves carers’ caregiving competence, coping, burden, and perceived stress. This may reduce dependence on primary, psychiatric, and institutional care. Results provide evidence that establishing effective partnerships between inter-professional clinicians in academic clinical health science centers, and community agencies can extend the reach of the expertise of specialized health care institutions.
This critical commentary assesses the consequences and impact of forms of seemingly widespread, constructive and altruistic service user and carer participation (SUCP) within social work. In particular, and whilst drawing from Gramsci's understanding of hegemony and Levitas's critical interpretation of social exclusion, it is proposed that SUCP serves the interests of government, affiliated organizations, including those within social work and social care, and, perhaps more generally, the disparate needs generated by the neo-liberal-inspired social care market. Arguably, there are also related substantive aspects of SUCP that are problematic on ethical grounds -including the possibility that participation inadvertently increases social inequalities by justifying and promoting hegemonic agendas. Some suggestions are briefly made regarding how to move SUCP forward, including difficult questions that must be asked about whether or not SUCP can confront forms of structural disadvantage and oppression.
The aim of this revised guidance is to assist councils with adult social services responsibilities to determine eligibility for adult social care, in a way that is fair, transparent and consistent, accounting for the needs of their local community as a whole as well as individuals’ need for support. It replaces Fair Access to Care Services: guidance on eligibility criteria for adult social care which was issued in 2003, and has been written in the light of recommendations made in the Commission for Social Care Inspection’s review Cutting the Cake Fairly. This revised guidance aims to set social care eligibility criteria within the context of both the new direction of policy established by Putting People First, and more generally within a broader theme of public service reform. Priorities for this reform include greater choice and control, better access to public services and information, empowerment of people using services and their carers at local level and the definition of user satisfaction as a key measure of success.
Purpose of the Study: Findings are reported from a study that examined the effects of the Tailored Caregiver Assessment and Referral (TCARE®) protocol, a care management process designed to help family caregivers, on care planning and caregiver outcomes. Design and Methods: A longitudinal, randomized controlled trial was conducted with 97 caregivers enrolled in a demonstration project in Georgia. Data included on care plans pertaining to service recommendations, compliance, and use were reviewed. Caregiver identity discrepancy, objective burden, relationship burden, stress burden, and depressive symptoms were assessed up to 4 times during a 9-month observation period. Chi-square tests, independent samples t tests, random effects regression growth curve analysis, and random intercept regression analysis were conducted. Results: A greater variety of services were recommended to and used by caregivers in the intervention group than in the control group. Caregivers in the intervention group had lower caregiver identity discrepancy, stress burden, and depressive symptoms over time than caregivers in the control group. Implications: Study findings provide initial support for the merits of the TCARE® protocol as a process that can be used to effectively target services to individual caregivers’ needs.
Heart failure has a comparable prognosis to many cancers and accounts for approximately 4% of deaths in the UK. Despite its poor prognosis, few patients have access to specialist palliative care services. The National Institute for Health and Clinical Excellence (NICE) acknowledges that the palliative care needs of patients with heart failure and their informal carers are not currently being met. Its recently published guidance recommends the development of an effective multidisciplinary service model for such patients.
Background. Despite decades of research showing high rates of unmet need in older people, there currently is little understanding of why these needs remain unmet. This study was performed as part of a larger feasibility study of a multidisciplinary needs assessment tool in primary care.
Objective. The aim of the present study was to explore patients' and carers' help-seeking behaviour and perceived barriers to meeting unmet needs.
Method. Four general practices were selected purposively in inner city and suburban London. A random sample of 1 in 20 people aged 75 years and over registered with each practice was selected for a multidisciplinary needs assessment using the ‘Camberwell Assessment of Need for the Elderly’ (CANE) schedule and unmet needs identified by patients and their informal carers. For each unmet need, a further semi-structured interview was used to explore the help-seeking behaviour and perceived barriers to meeting their needs. Responses were recorded verbatim contemporaneously and a thematic analysis performed on perceived barriers following completion of all interviews.
Results. A total of 55/84 (65.5%) of patients and 15/17 (88%) of carers completed the initial needs assessment. For 104 unmet needs identified by 31 patients and 11 carers, a further interview was completed on the barriers to meeting that need. Help had been sought for only 25/104 (24%) of unmet needs and it had been offered in only 19/104 (18%). In those not seeking help, withdrawal, resignation and low expectations were dominant themes. In those that had sought help, there were issues of perceived failure of service delivery and rationing, with themes of resignation and withdrawal again emerging in those declining help offered.
Conclusion. The majority of older people and their carers do not appear to seek help for their unmet needs for a range of complex reasons, often involving issues of withdrawal, resignation and low expectations. This complexity has implications for the commissioning of services for older people.
AIM: This paper reports a study exploring the experiences of nurses in accident and emergency units caring for people with intellectual disabilities.
BACKGROUND: People with intellectual disabilities are increasingly in contact with healthcare professionals in accident and emergency units. Often this contact occurs within the accident and emergency service, an area in which staff care for a diverse range of people. The experiences of people with intellectual disabilities within acute general hospitals in the United Kingdom and internationally has largely been reported as quite negative. Conversely, little is known about the experiences of nurses working in acute general hospitals, nor the exact nature of any challenges they encounter, in providing care to people with intellectual disabilities. This lack of understanding weakens opportunities for nurses to reduce barriers to providing an equitable service for people with intellectual disabilities.
METHOD: Five focus groups were conducted with 27 accident and emergency nurses from five hospitals in Northern Ireland in the spring of 2004. The data were then coded and recurring themes identified.
FINDINGS: This paper focuses on two themes: lack of knowledge of the nature of intellectual disability and dependence on carers. Whilst these themes have been acknowledged in the existing literature, they have received limited attention and exploration. The experience of fear and vulnerability was considered by participants to be a consequence of their lack of knowledge. The experience of these emotions is viewed as a key factor in nurses' over-dependence on patients' informal carers.
CONCLUSION: Increased awareness is needed among professionals in accident and emergency units of the abilities and needs of people with intellectual disabilities.
This paper reviews recent research on care-giver networks and the concepts and approach that they apply, with particular reference to the support networks of the primary care-givers of older people with Alzheimer's disease. It makes the case for an integrated approach to the explanation of the various combinations of formal and informal support that are found. It argues that more attention needs to be given to transformations in care-giver networks over time, and that this will require more development of both theoretical perspectives and analytical tools. The stages of a care-giver's commitment towards an elderly relative are examined, to understand the associations between changes in the ailing person's needs, the structure of the support network and the primary care-giver's roles. This approach makes useful contributions to the understanding of the development, maintenance and dissolution of supportive ties. Following the work of Pescosolido (1991), we propose an integrated perspective that combines the ‘care-giver career’ approach and the methods of ‘social network’ analysis.
A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson’s Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female (n = 17) and all were responsible for providing physical, social and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services.
Tentative efforts have been made in UK government policy and through pockets of social work and social care research to recognise how sexuality and gender identity shape the experiences of lesbian, gay, bisexual and transgender (LGBT) individuals providing care to others. In this article, we map the literature base of existing research in the field of LGBT care provision and outline themes of LGBT caring developed from a recent eight-month scoping exercise. Themes were generated from a scoping exercise conducted in England and Wales in which we gathered stakeholders' perspectives, including carers and carer organisations, about future research and problems for LGBT carers through focus groups and semi-structured interviews. We discuss three thematic areas developed from qualitative data: (i) the absent presence of LGBT carers in data collection and monitoring; (ii) the heterosexist responses and heteronormative assumptions encountered by LGBT carers from health and social care professionals, and (iii) efforts to disentangle the needs of transgender people providing care from LGB carers' experiences. To conclude, we identify lessons learnt for future social work research and directions for developing a wider research agenda.
Adult learning approaches require professionals to identify their learning needs. Learning about dementia syndromes is a complex task because of the insidious onset and variable course of the disease processes, the inexorability of cognitive and functional loss, and the emotional impact of neurodegenerative disorders on those experiencing them and on their family and professional carers. This report describes the ways in which learning tasks were understood and articulated by 774 community-based professionals from different disciplines, working in nominal groups in 24 settings across the United Kingdom, and explores how these groups set about identifying their learning needs. These groups focused on being insufficiently skilled to carry out educational functions, on solving problems of limited resources and inflexible systems, and on carers rather than on people with dementia. The groups’ solution hinged on multidisciplinary learning being the best route to achieving system change, but such an approach to learning was dealt with uncritically. Three themes received scant attention: the impact of practitioners’ own emotional responses to dementia on their clinical or practical skills; the educational potential of voluntary organizations; and the value of learning from the person with dementia, as much as from their carers. Professional development should therefore widen the debate about recognition of dementia to improvement of timely responses. It should concentrate on developing capacities not only around diagnosis, but also around communication and support.
This new Strategic Action Plan has been developed in response to what people with autism, their families and carers have said is important to them. We have also worked with a wide range of stakeholders to identify some key priority themes and actions that will make a real difference to the lives of children and adults with autism. The Plan sets out what we have done, what we were told and what we will do. It has three key priority areas: Awareness raising, information and training; Assessment and diagnosis; and Meeting support needs.
A shared approach to improving the care and support for people with dementia, their families and carers receive following a diagnosis. The declaration sets out: a shared commitment to joint action across government, health, social care, the third sector and all other relevant partners; the ambition to deliver better quality post-diagnostic care; and the need to deliver integrated and effective services that meet the needs of people with dementia and their families and carers.
This paper presents findings from an ethnographic study that examined how qualified district nurses’ conceptualized their role in relation to family carers and how they performed this aspect of their role.
A participant observational study involving fieldwork and in-depth interviews with six district nursing teams was undertaken over a 12-month period. Interview transcripts and fieldnotes were analysed by drawing upon the principles of dimensional analysis.
District nurses acted on the assumption that family carers would, by choice or default, provide care. Family carer support was conceptualized as a means of promoting self-care and the patient’s independence from nursing services. The rationale for providing family carer support was based largely on service capacity rather than on carer needs and preferences. Six characteristics of district nursing support for carers were identified: enabling, supporting, mediating, care substitution, crisis prevention and crisis intervention. Family carers were not recipients of district nursing support in their own right but were dependent upon the cared-for person receiving nursing care. This in turn was conditional upon others (general practitioners and hospitals) making appropriate patient referrals. Family carer support was also conditional upon effective communication and family carer receptiveness.
As the scope of home-based nursing continues to increase, district nurses need to take a more active stance in providing family carer support and adopt a family rather than patient-focused approach in order that family carers might be supported more effectively.
Although recent initiatives in Australia have attempted to respond to the needs of children and young people with care responsibilities, many continue to be unable to access responsive supports. A qualitative, exploratory study was conducted to identify the current needs and barriers to services for young carers and their families in Canberra, Australia. This paper focuses on a range of family, service and systems level issues that impede young carers' access to services. The findings are based on semistructured, face-to-face interviews conducted with 50 children and young people with care responsibilities. Purposive and snowballing sampling were used to recruit the sample. Peer researchers were involved in the development of the research parameters and conducted and analysed interviews. Young carers in this sample reported high levels of need but low levels of support provided formally and informally by their extended families and the service sector. Major barriers to support included reluctance within families to seek assistance for fear of child removal, negative intervention and increased scrutiny; the families' lack of awareness of available services; a lack of flexibility and responsiveness to the holistic needs of families; and a lack of service collaboration. The importance of recognising the specific needs of each member within the family unit was particularly highlighted as was the need for responsive and co-ordinated service supports.
Melanie Smart is a research associate at Sunfield School, Worcestershire, and a trainee clinical psychologist. In this article, she reports the results of a small-scale survey which looked at the views of 17 parents whose children with severe and/or complex learning difficulties had made the transition from a residential special school to an adult placement. Pa rents were asked their retrospective views on the transition planning process; their own involvement; and how the adult placement met the needs of their children.
Melanie Smart's findings indicate that the majority of parents were very much involved in the planning process, although they reported struggling to get consistency of approach and basic information. The young people themselves were found to be marginalised in the planning process, with very few being involved in any decision making. Most parents were happy with the eventual placement, but those who had concerns were still pushing for basic services and care. Of those who had suffered placement breakdowns, the major factor was lack of consistency of approach and failure to use prior information about the child.
This survey shows that parents and their learning disabled children experience difficulties in the transition process. There seems to be a distinct lack of person-centred planning, particularly with this user group, by both child and adult services. Parents are vital to this type of planning approach, particularly when the young people themselves cannot voice their needs or advocate their own rights to quality service provision. Melanie Smart argues that parents need access to better quality information and reassurance that their children will receive the services they deserve as young adults. The various agencies, she asserts, need to work together to ensure that the transition process is effective.
Introduction: Informal caregivers needs in cancer/advanced disease are largely unmet. The science of carer intervention evaluation is methodologically challenging, and the evidence historically weak.
Objective: This systematic review updates an earlier effectiveness review to determine both the effectiveness of subsequently published intervention studies, and the current state of science.
Method: The evidence was identified and appraised using a comprehensive search strategy. Articles were searched from 2001 to 2010 using the following electronic databases: Medline, PsychINFO and CINAHL. Inclusion criteria were studies reporting intervention data for informal adult caregivers of a patient with a diagnosis of cancer or receiving palliative care. The design and evidence rigour were assessed using the Jadad Rating Scale, and the Quality Rating Scale.
Results: 33 studies met inclusion criteria. From the original review, an encouraging increase was identified in the number of evaluations (from 8 to 33), in carer-specific interventions (from 6 to 17) and in the robustness of the study design (an increase from 2 to 12 studies with before/after measures, comparison groups and prospective data).
Conclusions: The evidence suggests a rapid increase in the number of robust intervention studies. However, the range of models remains narrow in relation to caregivers’ needs and preferences.
Background: Patients with severe chronic obstructive pulmonary disease (COPD) experience substantial symptom burden, psychological and social morbidity. The experience of this illness has an impact beyond the patient.
Objective: This study seeks to understand the experiences and needs of family carers of people with severe COPD.
Design: Semistructured interviews were held with current and bereaved carers of people with severe COPD. Several areas of content were targeted in the interviews, including the experience of caring for someone with COPD, views of treatment and prognosis, information and communication needs, and the understanding of palliative care. Data were analyzed thematically.
Results: The carers' and bereaved carers' experiences and needs around COPD are best understood as a dynamic of change, recognition, and adaptation. Carers faced many changes as the patients' general condition deteriorated. These were changes in the nature of caring tasks, in their relationships, and their own expectations. Carers usually recognized change had happened and sought to adapt through new approaches, new equipment, a new stance of thinking, and in most cases, continued caring. Within this theme of change, recognition, and adaptation were a series of subthemes: (1) the impact of caring, (2) recognizing the role of the carer, and (3) the needs of the carer including their needs from palliative care services.
Conclusion: The impact of caring borne by family carers is substantial and life changing. Health professionals may assist carers in their role through acknowledgement, facilitating recognition of the changes that have occurred (and their implications), and enabling creative adaptive responses for carers. Such assistance is likely to enhance the ability of carers to continue in this demanding role.
One of the key objectives of the community care reforms of 1990 in the United Kingdom was the development of a flourishing independent sector alongside good quality public services. The aims of the reforms were to increase the available range of options, widen consumer choice and promote independence. The purpose of the study reported here was to examine – from the perspective of older service users, their carers and care managers – experiences at the operational level of arranging, delivering and receiving care services. The findings are based on data gathered in seven local authorities including reviews of case files, policy documents and face-to-face, in-depth interviews with 55 users, 37 carers and 28 care managers. There is evidence of a pronounced emphasis on procedure-based systems of care management. Potentially this has two significant consequences. First, the fostering of personal relationships may be subordinated to the organisation of short-term tasks and thereby may threaten patterns of trust and accountability. Second, the associated fragmentation of the assessment and care management process which in turn can lead to discontinuities of care for users and their carers. The paper concludes that there is still some way to go before care managers as micro-commissioners have sufficient and reliable information or available service capacity to match providers' capabilities with users' and carers' needs.
Person centred care means listening to people to find out what is most important to them and without making assumptions. Care is holistic, and centres on the whole person: who they are, their life before, and how they currently feel. The emphasis is on what the person can, rather than cannot do. This video shows health and social care professionals working directly with individuals and their carers. There are no actors, and no prepared scripts. The film shows what a difference a person centred approach makes to individuals with many/complex needs. It links the Single Assessment Process (SAP), as the person centred health and social care framework, with other Department of Health policies e.g. long term conditions with its emphasis on case management. It outlines key principles of person centred care that are evolving, including holistic assessment, personalised care plans, sharing information, continuity and coordination, and self care/self management. A feature of the film is to hear the views of the individuals and carers themselves in 3 Case Studies with a Social Worker, Community Matron and a Community Mental Health Nurse.
Purpose. To expand understanding of informal stroke care-giving, validated tools previously used in Hong Kong and in the UK were used with Australian stroke carers to assess their stroke-related knowledge, perceived needs, satisfaction with services received and sense of burden after stroke patients' discharge home from acute hospital care.
Methods. Record audit and telephone interviews with two cohorts of 32 carers recruited in Sydney and Brisbane 1 and 3 months post-hospital discharge, using validated scales and open questions in May–July 2006.
Results. Female carers, those with prior care-giving responsibility, and those interviewed at three compared to one month post-discharge reported greatest needs and burden from the care-giving role; needs alone significantly predicted burden. Getting information and being prepared for life after discharge were central concerns. Some felt this was accomplished, but inadequate information giving and communication mismatches were apparent.
Conclusions. Service providers need to develop partnership working with stroke families and provide a network of services and inputs that cut across conventional boundaries between health and social care, public, private and voluntary organisations, with care plans that deliver what they delineate. Stroke care-givers have common issues across countries and healthcare systems; collaborative research-based service development is advocated.
The report and formal minutes of the Health Committee inquiry into the issues facing the future of social care. The report also makes recommendations to Government in advance of its White Paper on social care and update on funding. It discusses how a fully integrated system could be achieved with more efficient use of resources and the improved outcomes that it could deliver. The main sections of the report cover: The fragmentation of services and commissioning; Integrating around older people; Funding and staffing in an integrated system; The Dilnot Commission; The needs of carers; and A new offer for older people. The content focuses on people aged 65 and older, but many of the recommendations are equally relevant to services for younger people who have a disability, and other people who have long-term conditions. Volume II contains oral and written evidence; Volume III contains additional written evidence.
Background: Family caregivers of patients with poor prognosis upper gastrointestinal (GI) cancers are at high risk of experiencing psychological distress and carer burden. The early postoperative period is a time of high patient care needs and transition of care, with carers new to the caring role. This study aimed to explore the experiences of family caregivers of people diagnosed with upper GI cancer after surgical intervention to (1) identify their unmet supportive care needs and (2) investigate how family caregivers perceive their role during this time.
Methods: Family caregivers of newly diagnosed postsurgical upper GI cancer patients were recruited. Semi-structured telephone interviews were conducted at 3 weeks and 3 months post-surgery. Analysis involved a constant comparative approach. Sampling was discontinued when information redundancy was achieved. Fifteen family caregivers participated in the first interview and eight agreed to a second interview.
Results: Family caregivers reported significant information and support needs. Family caregiver distress was exacerbated by a lack of patient care knowledge. Access to support was limited by caregivers’ lack of understanding of the health system. Family caregivers view their role as part of their family responsibility.
Conclusions: This study provides new insight into the supportive care needs of family caregivers of upper GI cancer patients and the impact of unmet need on the emotional well-being of family caregivers. These results will inform future supportive care service development and intervention research aimed at reducing unmet supportive care needs and psychological distress of family caregivers of patients with poor prognosis upper GI cancer
Elderly people with functional limitations are predominantly cared for by family members. Women – spouses and daughters – provide most of this care work. In principle, gender inequality in intergenerational care may have three causes: first, daughters and sons have different resources to provide care; second, daughters and sons respond differently to the same resources; third, welfare state programmes and cultural norms affect daughters and sons differently. In this paper, we address the empirical question whether these three assumed causes are in fact responsible for gender differences in intergenerational care. The empirical analyses, based on the Survey of Health, Ageing and Retirement in Europe (SHARE), reveal that parents in need are in fact more likely to receive care from daughters than from sons. Daughters are more responsive to the needs of their parents than sons and respond differently to the same resources. Gender inequality is highest in countries with a high level of intergenerational care, high public spending on old-age cash-benefits, a low provision of professional care services, high family obligation norms and a high level of gendered division of labour. Welfare state programmes reduce or increase gender inequality in intergenerational care by reducing or increasing the engagement of daughters in intergenerational care. In general, care-giving by sons is hardly influenced by social care policies.
Background: A respiratory distress symptom cluster has recently been identified in lung cancer associated with breathlessness, cough and fatigue, and the study reported here is part of a wider body of work being undertaken to develop a novel non-pharmacological intervention (NPI) for the management of this symptom cluster. The current paper reports the views of health care professionals (HCPs) involved with cancer care regarding the most appropriate ways of developing and delivering such a novel intervention.
Methods: Five focus groups, supplemented with additional telephone interviews, were conducted with a range of both community- and acute-based HCPs involved in symptom management for lung cancer patients. Participants included oncologists, palliative care consultants, specialist nurses, occupational therapists and physiotherapists. The focus groups were transcribed verbatim and analysed using NVIVO to support a framework analysis approach.
Results: The current delivery of NPIs was found to be ad hoc and varied between sites both in terms of what was delivered and by which health care professionals. The provision of NPIs within acute medical settings faced common problems concerning staffing time and space, and there was a recognition that the preference of most patients to make as few hospital visits as possible also complicated NPI teaching. Moreover, there may only be a small window of opportunity in which to effectively teach lung cancer patients a novel NPI as the period between diagnosis and the onset of severe symptoms is often short.
Discussion: The participants agreed that the novel symptom management NPI should be individually personalised to the needs of each patient and be available for patients when they become receptive to it. Moreover, they agreed that the intervention would be most effective if delivered to patients individually rather than in groups, outside acute medical settings where possible and closer to patient’s homes, should be delivered by an HCP rather than a trained volunteer or lay person and should involve informal carers wherever practicable.
This article draws on Bourdieu's notion of habitus to address the interaction between cultural and structural factors in influencing the experience of informal care among Bangladeshi women in London. The authors present a secondary analysis of a qualitative study focusing on the accounts of informal care. The data were drawn from a two-year study with Bangladeshi women aged 35—55. Thirty-two out of the 100 women in the original study were providing care, mostly in isolated circumstances and with little or no formal support. The authors analysed the accounts of these 32 women and in the context of high levels of suffering and distress, three key themes emerged: amplification of suffering, dispositions of duty and religion and entitlements and fields of struggle. The gaps in access to formal support faced by these women suggest that strong cultural and structural forces determined their experience of informal care and the meanings they attached to their role as informal carers. Drawing on the work of Bourdieu and others, the authors suggest that where there is a lack of agency and resistance to support services, the explanation needs to move beyond poor information and language issues to a more rounded understanding of relationship between habitus and conflicts over local fields of welfare.
Guide giving information about services for disabled people available from government departments and agencies, the NHS, local government, and voluntary organisations. Covers every need, including housing, money, opportunities for holidays and leisure, and many more. Includes phone numbers, publications and a list of organisations.
Background: In contrast to a growing body of research on the situation of adult family care givers, in Germany hardly anything is known about the situation of children and teenagers who are involved in the care of their relatives.
Methods: In this Grounded Theory study 81 semi structured interviews have been carried out with children and their parents in 34 families, in which one member is chronically ill. 41 children and 41 parents participated and the sample is heterogeneous and diverse.
Results: On the one hand, there is the phenomenon 'keeping the family together", which describes how families themselves cope with the chronic illness and also, which tasks to what extent are being shifted and redistributed within the family in order to manage daily life. Influencing factors, the children's motives as well as the impact on the children also belong to this phenomenon. The second phenomenon 'to live a normal course of life' describes concrete wishes and expectations of support for the family to manage the hindered daily life. These two phenomena linked together constitute the 'model of experience and construction of familial care, in which children take over an active role'.
Conclusion: It will be discussed, that the more families are in dire need of support, the more their distress becomes invisible, furthermore, that management of chronic illness is a process, in which the entire family is involved, and thus needs to be considered, and finally, that young carer's relief is not possible without relief of their parents.
Information leaflet which summarises key points relation to the assessment and meeting care and support needs by local authorities under the Social Services and Well-being (Wales) Act. The leaflet covers assessing an individua'l's needs when the individual is a child or a carer; whether it is possible for a person can refuse a needs assessment; what happens after an assessment; and what to do if an individual does not have 'eligible needs'.
This strategy sets the government agenda for supporting carers over the next 10 years ranging across the span of government’s responsibilities. Short-term changes are to be implemented over the next three years, and longer-term priorities are identified for the next 10 years. The strategy addresses breaks, personalisation of services, income, information and advice, the workplace, training for the workforce, access to employment, emotional support, the health of carers and the specific needs of young carers. . The strategy is based on the views and concerns of carers themselves, drawn from consultation across the country.
This qualitative study explored the views of spouse carers in relation to the emotional impact of caring for a partner with a chronic or terminal illness. The study population consisted of nine full-time spouse carers, recruited using a snowball sampling strategy.
Semi-structured interviews took place in the carers’ homes. These were recorded and transcribed verbatim. The data were then analysed using constant comparative analysis. Themes identified included the emotional and physical health of the carer, personality changes in the spouse, relationship issues, denial, anticipating death, accessing support and coping strategies. Findings indicate that these carers experienced a whole range of feelings and emotions, which impacted on their health and well-being. They included fatigue, stress, distress, anxiety, depression, feelings of isolation and suicidal thoughts. These were particularly profound around the time of diagnosis, end of treatment, during a relapse and most particularly around the time of death. An increasing number of terminally ill people are now expressing a preference to be cared for at home. The potential risks to the health of caregivers therefore need to be taken into account. This study highlights the importance of assessing the needs of carers in order to identify those at risk of compromised health, which would then allow those requiring support to be offered prompt referral to specialist services.
Since the 1990s European conservative-corporatist welfare states have expanded public support for child-and eldercare needs. This is in marked contrast to Southern European countries, of which Italy is a paradigmatic example. In Italy, the traditional configuration (limited development of social services coupled with the importance of informal care, mainly provided by women) has recently come under strain, also because of the increasing employment of women. Nonetheless, rather than the development of new policies, this has given rise to a hybrid combination of informal care and the development of a loosely regulated and little supported care market. In this sense, the article asks why care in Italy has been "going private" instead of "going public". It is argued that cultural features and political ideology do not provide a sufficient explanation: in addition to sharp financial constraints, the structure and functioning of the state and labor market and migration regulation need to be considered.
The purpose of this pilot project was to test the feasibility of a telephone support group intervention for persons with hemophilia and HIV/AIDS and for their family caregivers. Their support needs were unique because they did not identify with predominant groups of persons with AIDS and were geographically dispersed from peers. The 12 week intervention involved separate telephone support groups for hemophiliacs and for family caregivers. The two groups, comprised of a predetermined maximum of six people, were co-led by a professional and a peer. The support group for family caregivers involved six people and the group for men with hemophilia included five people, including one peer facilitator and one professional facilitator in each group. The telephone support group discussions were taped, transcribed, and analyzed for prevalent themes. The peer and professional facilitators maintained weekly field notes. All participants reported that the telephone groups had a positive impact on meeting their support needs. They believed that they had benefitted from sharing information and that the support groups had decreased their feelings of isolation and loneliness. Participants, however, contended that the intervention should be longer than 12 weeks.
Introduction Despite the rising prevalence of stroke, no comprehensive model of postacute stroke care exists. Research on stroke has focused on acute care and early supported discharge, with less attention dedicated to longer term support in the community. Likewise, relatively little research has focused on long-term support for informal carers. This review aims to synthesise and appraise extant qualitative evidence on: (1) long-term healthcare needs of stroke survivors and informal carers, and (2) their experiences of primary care and community health services. The review will inform the development of a primary care model for stroke survivors and informal carers.
Methods and analysis We will systematically search 4 databases: MEDLINE, EMBASE, PsycINFO and CINAHL for published qualitative evidence on the needs and experiences of stroke survivors and informal carers of postacute care delivered by primary care and community health services. Additional searches of reference lists and citation indices will be conducted. The quality of articles will be assessed by 2 independent reviewers using a Critical Appraisal Skills Programme (CASP) checklist. Disagreements will be resolved through discussion or third party adjudication. Meta-ethnography will be used to synthesise the literature based on first-order, second-order and third-order constructs. We will construct a theoretical model of stroke survivors’ and informal carers’ experiences of primary care and community health services.
Ethics and dissemination The results of the systematic review will be disseminated via publication in a peer-reviewed journal and presented at a relevant conference. The study does not require ethical approval as no patient identifiable data will be used.
Background: Increased life expectancy has resulted in a greater provision of informal care within the community for patients with chronic physical health conditions. Informal carers are at greater risk of poor mental health, with one in three informal carers of stroke survivors experiencing depression. However, currently no psychological treatments tailored to the unique needs of depressed informal carers of stroke survivors exist. Furthermore, informal carers of stroke survivors experience a number of barriers to attending traditional face-to-face psychological services, such as lack of time and the demands of the caring role. The increased flexibility associated with supported cognitive behavioral therapy self-help (CBTsh), such as the ability for support to be provided by telephone, email, or face-to-face, alongside shorter support sessions, may help overcome such barriers to access. CBTsh, tailored to depressed informal carers of stroke survivors may represent an effective and acceptable solution.
Methods/Design: This study is a Phase II (feasibility) randomized controlled trial (RCT) following guidance in the MRC Complex Interventions Research Methods Framework. We will randomize a sample of depressed informal carers of stroke survivors to receive CBT self-help supported by mental health paraprofessionals, or treatment-as-usual. Consistent with the objectives of assessing the feasibility of trial design and procedures for a potential larger scale trial we will measure the following outcomes: a) feasibility of patient recruitment (recruitment and refusal rates); (b) feasibility and acceptability of data collection procedures; (c) levels of attrition; (d) likely intervention effect size; (e) variability in number, length and frequency of support sessions estimated to bring about recovery; and (f) acceptability of the intervention. Additionally, we will collect data on the diagnosis of depression, symptoms of depression and anxiety, functional impairment, carer burden, quality of life, and stroke survivor mobility skill, self-care and functional ability, measured at four and six months post-randomization.
Discussion: This study will provide important information for the feasibility and design of a Phase III (effectiveness) trial in the future. If the intervention is identified to be feasible, effective, and acceptable, a written CBTsh intervention for informal carers of stroke survivors, supported by mental health paraprofessionals, could represent a cost-effective model of care.
Trial registration: Current Controlled Trials ISRCTN63590486.
Objectives: The objective of this study is to examine the experiences of informal carers in terms of how their time spent caring is related to worry. Is worry about a care recipient a care practice, and if so, to what extent it can be understood temporally? Methods: Classical phenomenology underpinned this study. Three qualitative studies of people living with chronic illness in Australia were conducted between 2009 and 2013. Semi-structured interviews were conducted. Interviews were audio recorded and transcribed verbatim. Phenomenological thematic analysis of the data was undertaken. Results: Twenty-five informal carers participated. The findings pivot around three interconnected themes: time, worry and cost. Worry was identified as a temporally bound unseen cost to carers that informs carer identity irrespective of culture, ethnicity, or social status. Discussion: Worry is a practice that most carers report engaging in and it is one that comes with a temporal cost—it keeps people busy looking after the needs of others during the day and it keeps some people awake when they would rather be sleeping. Worry takes time and effort, it informs people’s construction of their own sense of self, motivates acts of care, and informs carers’ imaginings of what their future and that of their loved one(s) may entail.
This study investigated, by way of interview (n=45), the needs of those caring for a person with dementia and their satisfaction with current services in the Caerphilly County Borough of South Wales. Carers reported having the most difficulty coping with the demands on their time and the emotional strain associated with caring. Carers requested more information regarding available services, the diagnosis of dementia and the legal and financial aspects of caring. They also mentioned the need for a night‐sitter service, a 24‐hour helpline, more support groups and more visits from social workers and community psychiatric nurses (CPNs). On the whole, the carers were satisfied with the services provided, although their use of these services was not extensive. However, issues around lack of support, quality and availability of homes and hospitals and poor communications were identified as areas of concern. The findings were welcomed by strategic planners and the information is being used as a basis for developing and improving specific carer support services.
The literature on carer burden, needs and interventions developed to address care needs of those caring for people with psychosis are reviewed. The findings of a study which explored the views and experiences of carers, service users and professionals with regard to what carers of people with psychosis need from mental health services are then reported.
The Oxford Friends and Family Empowerment (OFAFE) service is a carer support service that originated in a collaboration between the Oxfordshire Complex Needs Service and the national mental health charity Rethink. OFAFE provides support and education for adults supporting an individual with a personality disorder. This paper describes the background and operation of the OFAFE service, along with the early stages of the development of a similar service for young carers, the Young Friends and Family Empowerment (YFAFE) service.
Focuses on the study conducted by the University of Wales which identifies the social care needs of informal carers for dependent adult relatives from a Bangladeshi community in Wales. Health risk assessment of the community; Assessment of the health care services in the community; Necessity for community nurses to be culturally proficient through the provision of accurate education.
This research summary provides an overview of the findings from a review of the literature on the needs of, and services for, families of drug users. A literature search and review was conducted using standard bibliographic search procedures in order to: establish what is known about the support needs of families of drug users; establish what is known about effective ways of addressing those needs; examine whether, and how, family support groups/ services link with other services; examine whether involving families within the treatment or service offered to the drug user has beneficial effects upon the family and the drug user.
Background: providing support to a family member with dementia often comes at a cost to the quality of life (QoL) of the carer (caregiver), giving rise to current and future unmet needs for health and social care and support themselves. These have important implications for costeffective health and social care support services and pathways. This article summarises the findings of a scoping review of the literature on QoL measures for carers of people with dementia that was commissioned by the Medical Research Council to address what is ‘state of the art’ in measurement and identification, any gaps in the evidence base, and challenges for further research.
Method: a scope of the literature using Medline and Psychlit (all years) as these are particularly relevant to health psychology was undertaken in March 2013, using combinations of the following keywords: quality of life, measure, scale, caregiver (including carer), chronic illness (the term long-term condition is generally captured under this phrase), dementia, cognitive impairment, Alzheimer’s disease. Results: there is a dearth of carer-reported QoL measures, in contrast to the existence of proxy scales for carers which are used to measure the patient’s/client’s QoL (prevalent in relation to dementia). Several methodological challenges were identified.
Conclusion: caring for people with dementia often has both negative and positive consequences which need inclusion in measures but these may vary by individual and over time. The lack of consensus about what to measure and how in QoL of carers of people with dementia does not help practitioners or service funders. Measures need to be appropriate for younger and older carers, type of carer and caring tasks, and be sensitive to cultural and sociodemographic differences.
In 2006 the Scottish Government provided just over £8 million to help 32 health and social care partnerships to develop telecare services. This paper presents a summary of the 2007-2008 evaluation of the Scottish Telecare Development. This evaluation focused on measuring overall program progress toward eight predefined Scottish Telecare Development objectives. Results indicate that the initial investment has resulted in significant savings to the health and social care sectors. Additionally, telecare provides opportunities to promote independence and improve the quality of life of service users and their informal carers. However, some caution needs to be taken in interpreting the findings as results are based on self-reported performance from partnerships, and many of the reported monetary ''savings'' are actually efficiency savings and are unlikely, in practice, to be cash-releasing.
Purpose: Our study aimed to investigate the relationship between unmet supportive care needs and carer burden and happiness, in head and neck cancer (HNC).
Methods: Two hundred eighty-five HNC informal carers were sent a postal questionnaire between January and June 2014, which included the supportive care needs survey for partners and caregivers of cancer survivors (SCNS-P&C) and the CarerQol, which assesses burden and happiness. Multiple regression analysis was conducted to examine the association of (i) carer characteristics, (ii) carer situation, and (iii) unmet supportive care needs, with carer burden and happiness
Results: One hundred ninety-seven carers completed the questionnaire (response rate = 69 %), 180 of whom were included in the analysis. The majority were female (76 %), not in paid employment (68 %) and caring for their spouse (67 %). On average, carers reported relatively low levels of burden and relatively high levels of happiness. Carer factors explained 42 % of variance in levels of burden and 24 % of variance in levels of happiness. Healthcare service needs were associated with carer burden (β = .28, p = .04), while psychological needs (β = −.38, p = .028), health care service needs (β = −.30, p = .049), information needs (β = .29, p = .028), carer comorbidity (β = −.18, p = .030), and gender (β = −.16, p = .045) were associated with happiness.
Conclusions: Our results indicate that different aspects of carer characteristics and unmet needs are associated with carer burden and happiness. Efforts directed at reducing unmet healthcare service needs in particular are merited given their associations with both aspects of carer quality of life.
This qualitative study was informed by grounded theory and data were gathered primarily through semi-structured in-depth interviews with thirty-seven theoretically sampled former carers. They were all white British, lived in the East Midlands and were predominately over sixty (68 per cent) and female (70 per cent). With the exception of one, all had cared for a close relative, 65 per cent having cared for a partner/spouse. Most of their dependants were older adults and each case the cessation of caring had coincided with the death of the dependant. The findings showed that post-caring life for the interviewees had an identifiable trajectory with three phases—the ‘post-caring void’, ‘closing down “the caring time”‘and ‘constructing life post-caring’. Each of these phases involved a distinct set of experiences. In addition, the study established that 70 per cent of those in the sample had cared more than once. Thus, two new concepts—'the post-caring trajectory' and the ‘serial carer’—were developed to reflect these findings. Suggestions are made about ways in which policy, practice and further research can be developed in order to ensure there is effective provision for those who have ceased caring.
The aim of this study was to investigate the amount of time formal caregivers spend addressing activities of day-to-day care activities for persons with Down's syndrome (DS) with and without Alzheimer's dementia (AD). Caregivers completed for 63 persons with DS and AD, and 61 persons with DS without AD, the Caregiving Activity Survey-Intellectual Disability (CAS-ID). Data was also gathered on co-morbid conditions. Regression analysis was used to understand predictors of increased time spent on day-to-day caregiving. Significant differences were found in average time spent in day-to-day caregiving for persons with and without AD. Mid-stage and end-stage AD, and co-morbid conditions were all found to predict increased time spent caregiving. Nature and tasks of day-to-day caregiving appeared to change as AD progressed. The study concluded that staff time to address day-to-day caregiving needs appeared to increase with onset of AD and did so most dramatically for persons with moderate intellectual disability. Equally, while the tasks for staff were different, time demands in caring for persons at both mid-and end-stage AD appeared similar.
Background: The Icelandic old-age care system is universal and the official goal is to support older people live independently for as long as possible. The aim of this study is to analyse living conditions and use of formal and informal care of older people in Iceland. Methods: The results are based on the new study ICEOLD, a telephone survey which included questions on social network, health, activities of daily living, and received support from the community and/or from relatives, neighbours, and friends. Results: Almost half of the sample (47%) receives some kind of care, with 27% of them receiving only informal care, which is understood to mean that informal care is of great importance and families are the main providers of help. For hypothetical future long-term care, older people wish to be cared for in their homes, but those already in need of assistance prefer to be cared for in institutions. Discussion: Caring relatives are the main providers of support to older people in their homes and it is important to provide them with suitable formal support when the care responsibility increases. Conclusions: As the care system in Iceland is now under reconstruction, the important contribution of informal carers must be recognised and taken into account when planning the care of older people.
This strategy sets out the key actions the Welsh Government intends to take for the remainder of this Assembly Term, up to 2016. It provides a framework for agencies to work together to deliver services and support to carers. Five priority areas are explained: health and social care; identification, information and consultation; young carers and young adult carers; support and a life outside of the caring role; and carers and employment. The strategy contains 18 key actions, which will form the basis of a report to be published by the end of 2013.
The authors review current research on provision of services to older people and their carers in remote and rural areas across the UK, with specific reference to Scotland. They consider the policy implications for dementia services in this context.
Background: Stroke is a life-disrupting, costly event for many stroke patients and their families. An estimated 4.8 million stroke survivors are living in the community with some level of disability, and the incidence of stroke is expected to rise with correspondingly higher costs, both in dollars and other forms of burden for families of patients with stroke. Approximately 80,000 veterans have experienced a stroke, leaving approximately 40% with moderate residual impairments and 15%–30% with severe residual disability. Purpose: The purpose of this study was to identify postdischarge needs of veterans with stroke and their caregivers and to identify how to design a care coordination/home-telehealth (CC/HT) program to address these needs. Method: Veterans and their caregivers (N = 22) were interviewed about their experiences with stroke, their postdischarge stroke recovery needs, and their experiences with the Veterans Administration’s existing Care Coordination/Home-Telehealth (CC/HT) program. Data were analyzed using the process of grounded dimensional analysis. Results: Core concepts identified were (a) assessing and managing the residual effects of stroke, and (b) shifting roles and responsibilities. Conclusion: The findings suggest that a comprehensive care coordination program that includes home telehealth could aid veterans and their caregivers in managing stroke recovery across the continuum of care at home and within the community. The results of the study can provide elements to be included in the CC/HT program.
A modified Delphi study was carried out in order to obtain consensus regarding the content of a university training course to involve service users and carers at all stages of the health and social care educational process within a higher education environment. Telephone interviews were carried out with service users and carers, educationalists and leaders in the field of service user and carer involvement to generate curriculum ideas. A questionnaire was developed from their responses and sent to a purposive sample of 65 people (24 service users and carers, 28 health and social care educationalists and 13 leaders in the field of service user and carer involvement). Fifty‐five statements were generated with consensus being reached on 46 (84%) statements. Mismatches between service users and carers, educationalists and leaders in the field were explored. Key themes to be included in the curriculum were identified. This paper demonstrates that the best training is not imposed upon service users and carers by academics or others who think they know best; rather, that service users and carers themselves can play a leading role in identifying their training needs and devising strategies to ensure these needs are effectively met.
Objective: To systematically review the research on stroke patients’ and caregivers’ educational needs.
Methods: A search of the literature prior to and including the year January 2009 was conducted using Medline, CINAHL, EMBASE, PsychINFO and the Cochrane Library, yielding 959 articles. Of these, 21 studies were included in the review.
Results: Stroke patients and caregivers reported many and diverse educational needs, which often were not met. The educational needs of stroke patients and caregivers concerned knowledge about the clinical aspects of stroke, prevention, treatment and functional recovery. The most commonly reported needs of caregivers involved patients’ moving and lifting, exercises, psychological changes and nutritional issues. Patients and caregivers wanted information that was tailored to their situation.
Conclusion: Patients and caregivers have many unmet educational needs. The findings call for improved education of patients and caregivers on various issues that are specific to the various recovery phases after stroke.
Practice implications: The findings of this review can be used to develop educational interventions for stroke patients and caregivers. Further research is needed to investigate the feasibility and effects of educational interventions and whether they meet the educational needs of patients and caregivers.
Little is known about the factors that mediate the caregiving experience of informal carers at home, which could inform about ways of supporting them in their caregiving role. Our objective was to investigate the caring experience of carers for patients with an advanced progressive illness (chronic obstructive pulmonary disease [COPD], heart failure, cancer, or motor neuron diseases [MND]), who suffer from breathlessness.
A purposive sample of 15 carers was selected. They were recruited via the patients they cared for (who suffered from COPD, cancer, MND, or heart failure) from the hospital and the community. Data were collected through semistructured, in-depth interviews. All were tape-recorded and transcribed verbatim. The analysis used a Grounded Theory approach and NVivo software facilitated the management and analysis of the data.
Several key issues affected caring in a positive or a negative way. The threats to caring were uncertainty, carers' own health problems, an imploded world, negative reactions from outside, person loss, and acute exacerbations. Resources that carers drew on were acceptance, self-care, availability of support, feeling that caring is a shared responsibility with the patient, and “getting on with” caring in case of emergencies. Breathlessness was particularly challenging, and carers did not have any strategies to relieve the symptom. They were ill prepared for acute exacerbations.
Carers need to be included in opportunities for support provision in advanced illness. Negotiated involvement of a health professional could buffer the heavy responsibilities related to home care. They could provide problem-solving skills and build on the resources that carers draw on in response to what they experience as most threatening to their caring role.
Across Government, the shared ambition is to put people first through a radical reform of public services, enabling people to live their own lives as they wish, confident that services are of high quality, are safe and promote their own individual needs for independence, well-being and dignity. This ministerial concordat establishes the collaboration between central and local government, the sector's professional leadership, providers and the regulator. It sets out the shared aims and values which will guide the transformation of adult social care, and recognises that the sector will work across shared agendas with users and carers to transform people’s experience of local support and services.
The focus of this four-stage, longitudinal, qualitative, and quantitative study was to explore, from the caregivers perspective, the impact of caring for a person with a diagnosis of terminal cancer, in order to improve the planning and coordination of home-based hospice services in Australia. Caregivers identified five primary-care needs relating to lack of information and ineffective communication with health professionals, inadequate emotional support, the need for assistance with physical care and household tasks, support for caregiver health and social wellbeing, and financial issues. The extent to which current service provision met each of these needs varied. The findings of this study suggest that if palliative care is to be shifted to the home environment, improvement in services concerned with providing support for family caregivers is essential if existing guidelines for palliative care provision are to be met.
Information on what the changes introduced by the Care Act will mean for carers and the cared for. The resource provides an explanation of care and support in England and outlines key elements of the act, including: deferred payment agreements; needs and eligibility; support for carers; and cap on care costs.
Introduction: Stroke is a leading cause of disability worldwide. While health services focus on the needs of diagnosed persons, families provide extensive informal care with diverse effects on daily life and health. Understanding caregivers' experience is critical to support their health and sustained contributions. This exploratory study examined how caring for partners with stroke and aphasia impacts caregivers' activities, identifying possible differences according to race/ethnicity through the lens of occupation.
Method: Mixed methods identified the occupational impact of caring for a partner with stroke and aphasia. Twelve participants completed the Carer Communication Outcome After Stroke, Occupational Gaps Questionnaire, Activity Card Sort, and a semi-structured interview.
Findings: The impact of aphasia on caregivers varied greatly. The Occupational Gaps Questionnaire revealed gaps in cultural activities. On the Activity Card Sort, caregivers experienced occupational loss, primarily in low-demand leisure and social activities. Six themes emerged from the interviews: personal factors, finding new equilibrium, participation barriers, compensations for aphasia, uncertainty, and obligations. Trends differed somewhat by race/ethnicity.
Conclusion: Findings have implications for health professionals working with individuals with stroke and aphasia. The caregivers' experience deserves attention to support their quality of life and wellbeing, which can promote sustained assistance for their relatives with stroke.
Informal carers have a pivotal role in caring for patients who have had a stroke. Research has shown that informal carers have unmet information, psychological and social needs. There is a lack of research about how informal carers in Northern Ireland manage the role of caring for a patient who has experienced stroke, and what kind of support they need and receive. This literature review explores the experiences of informal carers providing stroke care in the home. The issues highlighted in the article are relevant worldwide, because the incidence of stroke is increasing in developed and developing countries.
Background: There is evidence that late life depression is associated with high levels of unmet needs. Only a minority of the depressed patients appears to be adequately treated.
Methods: Ninety-nine older patients (58–92 years), 96 informal carers and 85 health-care professionals were recruited from six outpatient facilities for old age psychiatry in the Netherlands and interviewed to identify met and unmet needs, using the Camberwell Assessment of Needs for the Elderly (CANE). The severity of depression was measured with the Montgomery Åsberg Depression Rating Scale (MADRS).
Results: On average patients scored more unmet needs than staff and carers. On item level, patients and staff showed the highest agreement in the psychological needs category. Patient and carers showed the highest agreement on physical health needs. Logistic regression showed that severe depression is a significant predictor of low concordance between stakeholders on a substantial number of CANE items.
Limitations: Kappa coefficients were computed to determine agreement between parties involved. However, Kappa coefficients should be interpreted with caution, especially when obvious disparity in unmet needs scores between groups of interest can be observed.
Conclusion: Home dwelling older patients with major depressive disorder, their practitioners and their informal carers have different perceptions of the older patients unmet needs.Practitioners should be aware of the negative impact of depression severity on reaching agreement regarding unmet needs and its possible consequences for mutual goal setting and compliance.
In 2004 in Europe, more than two-thirds of those born during 1945–54 had a parent or parent-in-law alive, and the rates of co-residence with their ascendants ranged from less than four per cent in Sweden, Denmark and The Netherlands, to between 17 and 24 per cent in Italy, Spain and Greece. The proportions that had provided practical help to their parents during the previous 12 months had a north-south gradient, from approximately one-in-three in the northern countries to 15 per cent or less in the southern countries. In contrast, the proportions of the helpers that provided regular and almost daily help had an inverse pattern, being low in Sweden and Denmark and much higher in the south. Some of these differences may be attributable to variations among the countries in the interpretation of ‘help’. Help to elderly parents tends to be most associated with the gender of givers and receivers, the living arrangements, geographical proximity and needs of the parents, and the availability of adult children who can help. There is little evidence of a specific ‘baby-boomer generation’ effect on the probability of giving help.
Objective: To describe the experiences of illness and needs and use of services in two groups of patients with incurable cancer, one in a developed country and the other in a developing country.
Design: Scotland: longitudinal study with qualitative interviews. Kenya: cross sectional study with qualitative interviews.
Settings: Lothian region, Scotland, and Meru District, Kenya.
Participants: Scotland: 20 patients with inoperable lung cancer and their carers. Kenya: 24 patients with common advanced cancers and their main informal carers.
Main outcome measures: Descriptions of experiences, needs, and available services.
Results: 67 interviews were conducted in Scotland and 46 in Kenya. The emotional pain of facing death was the prime concern of Scottish patients and their carers, while physical pain and financial worries dominated the lives of Kenyan patients and their carers. In Scotland, free health and social services (including financial assistance) were available, but sometimes underused. In Kenya, analgesia, essential equipment, suitable food, and assistance in care were often inaccessible and unaffordable, resulting in considerable unmet physical needs. Kenyan patients thought that their psychological, social, and spiritual needs were met by their families, local community, and religious groups. Some Scottish patients thought that such non-physical needs went unmet.
Conclusions: In patients living in developed and developing countries there are differences not only in resources available for patients dying from cancer but also in their lived experience of illness. The expression of needs and how they are met in different cultural contexts can inform local assessment of needs and provide insights for initiatives in holistic cancer care.
Background and objectives: Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.
Methods: A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.
Results: Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.
Conclusions: This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.
BACKGROUND: United Kingdom legislation and clinical standards for schizophrenia challenge nurses to re-examine the support that they provide to carers. Nurses are in a key position to provide this support but may lack the necessary skills to do so. The training programme evaluated in the present study aimed to address this problem.
STUDY AIM: To evaluate change in clinical practice brought about by post-registration training for mental health nurses in supporting carers of people diagnosed with schizophrenia.
DESIGN/METHODS: The study was undertaken in collaboration between the Universities of Dundee and Glasgow, and Tayside National Health Service (NHS) Trust (Scotland). Respondents were nine nurses who completed training and then delivered a planned programme of support to carers. Data on nursing practice were gathered through semi-structured interviews with nurses before training and after providing support. Following the support intervention, carers also commented on the nurses' practice.
FINDINGS: Eight of the nine nurses reported changes in practice in five key areas: They built collaborative relationships with carers, developed a carer focused approach to their practice, acknowledged and supported the carer role, and made progress in identifying carer needs and accessing resources to meet these needs. Nurses experienced difficulties supporting carers who had mental health problems or previous negative experiences of services. Those who lacked community experience also found it difficult to adjust to working in a community setting. Although clinical supervision helped them to work through these difficulties, they remain largely unresolved.
CONCLUSIONS: Findings from this study indicate that appropriate training may enable nurses to improve the support provided to carers of people diagnosed with schizophrenia. This study represents an important stage in determining the nature of support offered to carers by nurses. While developed to help nurses to meet clinical standards set for schizophrenia in the UK, findings may have clinical significance for nurses in other countries.
Family caregivers need adequate support from healthcare professionals to complete the demands associated with caregiving with minimal impact on their own health and well-being. An optimal balance of provision of care between family and support services has not been achieved; therefore, this literature review investigates how family caregivers endure and cope with the challenges of caring for an adult relative with cancer. This review considered the characteristics of caregivers and their functioning, the external and internal supports that help them cope, the ongoing challenges as they journey along the caregiving trajectory, the personal costs of caregiving, and how caregivers cope with supporting their family members through to the end of their journeys. The literature provides an abundance of research on the numerous challenges encountered by families living with cancer; however, little research has been conducted on the coping strategies used by family caregivers at specific stages along the illness trajectory that either optimize or hinder personal recovery. Even less information is available on interventions nurses can introduce to ease the caregiving burden. Improving nurses' understanding of the stressors and unmet needs associated with caregiving is fundamental to the development of effective family-focused clinical interventions.
The White Paper 'Caring for our future: reforming care and support' sets out plans to develop and test potential new assessment and eligibility models. From April 2015, subject to the passage of the Care Bill, a new national minimum threshold for eligibility will be specified, which will set a guarantee of the minimum needs which local authorities must meet in every area. This will be introduced through a provision in clause 13 of the Bill, which requires Secretary of State to make regulations to set out the “eligibility criteria” for all local authorities. The Draft Care and Support (Eligibility Criteria) Regulations set out this minimum threshold on what needs are eligible for care and support in local authorities across England, for people needing care and carers respectively. These are the needs which must be met, provided the person needing care is ordinarily resident in the local authority area, and the person needing care or the carer as appropriate wants the local authority to meet them.
Goals of work: This paper reports findings from a study which identified the nature and volume of supportive care received by British military services personnel and their dependents who experience cancer and are based in Germany. The objectives were to (1) identify any gaps in the provision of supportive care, (2) determine the potential for additional supportive care services (local or remote), and (3) identify any educational or development issues for DMWS personnel.
Materials and methods: Interviews and focus groups were conducted with people with cancer (n = 7), informal carers (n = 6), British health care professionals employed by British Forces in Germany (n = 8), German health care professionals (n = 3), senior military personnel (n = 6) and army support personnel (n = 5). Analysis of the data was thematic and focused on accounts of care related to core issue identified in the UK’s National Institute of Health and Clinical Excellence (NICE) guidelines (24).
Main results: The paper explores the difficulties which British military personnel experience in their cancer care. The shortfalls in best practice are discussed in the framework of NICE guidelines focusing on communication, information, psychosocial care and coordination of care/inter-agency working. Significant gaps in the supportive care service provision are apparent
Conclusions: The limited assessment and discussion of patients’ supportive care needs suggests key areas for service improvement for providers both within the British Military in Germany, and in the services provided by German organisations. These findings highlight issues that should be considered by those providing supportive care for marginalised patient groups, such as patients and carers from different cultures.
This article discusses the findings about the role of face-to-face carers groups which emerged from a qualitative, interpretive study of 37 former carers' experiences in the UK. The study was informed by grounded theory and semi-structured in-depth interviews were used as the main method of data collection. The advantages and disadvantages of carers groups during caring and post-caring that were identified are presented. These include the nature of the support they provided for their members, their limitations and ways in which they can be developed in order to meet the needs of carers and former carers. The concepts of social integration and social support are used to supplement the interviewees' explanations of the beneficial effects of carers groups. Following the discussions, suggestions are made about further research into increasing the effectiveness of carers groups' in meeting the needs of those who are caring and their previously unrecognized role in meeting post-caring needs.
OBJECTIVES: Carers of people with eating disorders (ED) have high levels of distress, but little is known about the contributing factors. The aim of this study was to examine predictors of carers' distress and caregiving appraisals using a model of caregiving adapted from the previous literature.
DESIGN: A cross-sectional design was used.
METHODS: A sample of 115 individuals currently caring for someone with an ED participated in the study. Carers completed self-report assessments of psychological distress (GHQ-12; Goldberg & Williams, 1988), experience of caregiving (Szmukler et al., 1996), illness representations (IPQ-SCV; Barrowclough, Lobban, Hatton, & Quinn, 2001) and caregiving needs (CaNAM; Haigh & Treasure, 2003). Simple and multiple hierarchical regressions were conducted.
RESULTS: Approximately 36% (39/109) of carers had scores on the GHQ which indicated mental health difficulties, with 17% (19/109) experiencing high psychological distress. A negative experience of caregiving was associated with carers' distress. The dependency of the individual with the ED and stigma associated with the illness were most highly predictive of carers' distress. Shorter illness duration, higher levels of needs (lower levels of support) and perceptions of high illness consequences contributed to greater negative caregiving appraisals. The belief that the illness was attributable to the sufferers' personality was related to fewer positive appraisals.
CONCLUSIONS: Adjusting to the impact of a family member experiencing an ED is problematic, as suggested by the relationship between shorter illness duration and greater negative appraisals of caregiving. Interventions to help reduce dependency and alleviate stigma may help to decrease carers' distress.
This paper studies if a situation of formal care unmet needs is a strong motivation for the onset of caregiving behavior, and if becoming caregiving is a compelling argument for leaving current job (in the presence/absence of formal care unmet needs). We use data from the Eurobarometer 67.3 for 18 European countries and estimate a three simultaneous equations model taking into account the potential endogeneity of labor participation and formal care unmet needs and assuming non-zero correlation among the error terms of the three equations. Results show that individuals who anticipate that becoming caregiver can suppose an obstacle for continuing working feel more refractory and are more prone to avoid caregiving responsibilities. Knowing someone with an unmet needs problem increases the probability of becoming caregiver by +19.23 pp (with a maximum of +39.39 pp for difficult access unmet needs) and raises the probability of leaving employment by 5.77 pp. Having to possibility of receiving economic benefits for caregivers encourage more labor market exit as compared to payment of social security contributions during care leaves.
The special carer grant has so far failed to live up to expectations, especially in targeting ethnic minority carers. David Hepworth outlines what more needs to be done to help these 'hidden carers'.
Family carers of people with dementia may take on this role without understanding how it will evolve or how to obtain support. Hospitalisation of the person with dementia can not only compound carers’ concerns, but also provides an opportunity for their needs to be addressed. This project involved preparing hospital based nurses, so they could initiate a dialogue with family carers of patients diagnosed with dementia, developing a protocol to guide the nurses as they provided carers with a dementia information booklet, implementing this protocol during a 12-week trial period, and obtaining feedback from the nurses using a questionnaire. At least 21 booklets were distributed; 16 nurses provided feedback. Nurses viewed the practice change positively. Recommendations are to engage ward based champions to embed this strategy into nursing practice, keep the staff informed, and ensure that the booklet is kept in a location visible to the staff.
This paper discusses the experience of South Asian carers of a person with cerebral palsy. Previous research in this area has failed to explore carers' perceptions of causation or their views on the quality of service support. Qualitative interviews were carried out with twenty carers in two localities in the north of England with the aim of providing in‐depth contextualized data on their experiences over time, their attitudes towards cerebral palsy and their interactions with service provision. Results show that parents' views on causation differ markedly from explanations based on a medical, genetic model of cause. Parental attitudes towards cerebral palsy are shown to be influenced both by interactions with service professionals and by parents' ability to manage their situation. The absence of adequate material and emotional resources may foster a negative construction of disability by parents that, in turn, has detrimental effects on the individual with cerebral palsy. Parents' religious beliefs can act as a source of emotional support that helps them develop a constructive perspective on disability and deal with future uncertainty. We conclude that developments in service provision need to build on the perspectives of South Asian individuals and communities to respond effectively to their needs.
As people with learning difficulties live longer their carers become correspondingly older. A council project in south London is helping meet the needs of older carers. [Introduction]
Aims and objectives: To explore bereaved family carers' perceptions and experiences of a hospice at home service.
Background: The increasing demand for the development of home-based end-of-life services is not confined to the western world; such services are also emerging in resource-poor countries where palliative care services are developing with limited inpatient facilities. Despite this growing trend, studies show a variety of interrelated factors, with an emphasis on the availability of informal carers and their ability to cope, which can influence whether terminally ill patients actually remain at home. A hospice at home service was developed to meet patients' and families' needs by providing individually tailored resources.
Design: A qualitative study.
Methods: Data were collected by semi-structured, digitally recorded interviews from 20 family carers who had experienced the service. Interviews were transcribed verbatim and a thematic approach adopted for analysis.
Results: All participants reported a personal positive impact of the service. Family carers commented the service provided a valued presence, they felt in good hands and importantly it helped in supporting normal life.
Conclusions: The impact of an individualised, targeted, hospice at home service using dedicated, palliative care trained, staff, is perceived positively by family carers and importantly, supportive of those with additional caring or employment commitments.
Relevance to clinical practice: The emergence of hospice at home services has resulted in more options for patients and their families, when the increased amount of care a family member has to provide in these circumstances needs to be adequately supported, with the provision of a flexible service tailored to individual needs and delivered by appropriately trained staff.
Family care provision is the norm for adults with intellectual and developmental disabilities (I/DD), even as they and their support networks grow older. As families age together, the role of primary carer frequently transitions from the parent to a sibling, as aging parents die or become too frail to provide continued support. The purpose of this paper is to explore the transition in care from the perspective of a sibling who has replaced parents as the primary carer for an individual aging with I/DD. Data are drawn from semi-structured, in-depth interviews with a sample of adults over age 40, living in the United States, and caring for a sibling with I/DD (n = 15). Data were analyzed using a constant comparative qualitative approach. Results reveal themes impacting the adjustment to the role of primary carer, the extent to which aging transformed the content of care needs, the importance of planning, and the availability of supplementary support. Findings from this study underscore the need to develop long-term services and supports as well as educational resources that accommodate this population of carers as they age together with their sibling with I/DD.
This resource is a collaboration between the Royal College of General Practitioners (RCGP) and The Princess Royal Trust for Carers. It has been developed with the help of Sheffield University and over twenty GP practices who have piloted and evaluated some of the resources
Health is an important factor in the capacity of family and friends (informal carers) to continue providing care for palliative care patients at home. This study investigates associations between the health-related quality of life (HRQOL) of current informal carers and characteristics of the carers and their caregiving situation, in a sample of Australian carers of palliative care patients. The cross-sectional study used the Short Form-36 Health Survey to measure HRQOL. It found carers to have better physical health and worse mental health than the general population. Of 178 carers, 35% reported their health to be worse than it was one year ago. Multiple regression analyses found that the HRQOL of carers whose health had deteriorated in the previous year was associated with the patient's care needs but not the carer's time input, unlike the carers reporting stable health. Clinicians caring for palliative care patients should be alert to the potential health impairments of informal carers and ensure that they are adequately supported in their caregiving role and have access to appropriate treatment and preventive health care.
Background: Patient involvement in clinical decision making is increasingly advocated. Although older patients may be more reluctant to become involved, most do appreciate being informed. However, knowledge about their experiences with and preferences for receiving information is limited, and even less is known about these topics for frail older people.
Objective: To explore the experiences of frail older people and informal caregivers with receiving information from health care professionals as well as their preferences for receiving information.
Methods: We conducted semi-structured interviews with frail older people (n = 11, 65–90 years) and informal caregivers (n = 11, 55–87 years). Interviews were transcribed verbatim and analysed using a grounded theory approach.
Results: Frail older people and informal caregivers varied in their information needs and discussed both positive and negative experiences with receiving information. They preferred receiving verbal information from their physician during the consultation; yet would appreciate receiving brief, clearly written information leaflets in addition. They employed several strategies to enhance the information provided, i.e. advocacy, preparing for a consultation and searching their own information. Contextual factors for receiving information, such as having enough time and having a good relationship with professionals involved, were considered of great importance.
Conclusions: Participants described a wide range of experiences with and preferences for receiving information. However, even if the information provided would meet all their preferences, this would be of limited significance if not provided within the context of an ongoing trusting relationship with a professional, such as a GP or practice nurse, who genuinely cared for them.
Objectives: Elderly patients are increasingly receiving care in their own homes but this process is not well supported by existing systems which suffer from limited integration of health and social care services. The result is fragmentation of care, lack of coordination between services, duplication of services, and limited participation of patients and informal carers in the care process. In this study we attempt to identify the key intersection points, i.e. where different actors involved in the homecare of elderly patients interact, and to analyse their individual information requirements. How these requirements can be met using information and communication technology (ICT) is discussed. Methods: The study involved 13 participants representing professional health and social care workers, patients and relatives. Their interactions and information needs were obtained using a variety of methods including multi-disciplinary thematic seminars, participatory observations, interviews, inventory of current information systems, scenarios, sketching and prototyping. Results: The key intersection points where information exchange between different actors is needed are (i) Initiation of patient specific changes in homecare provision, (ii) Consultations, (iii) Delegation of duties, (iv) Referrals, (v) Important health events and general care (vi) Coordination of planned activities. Shared information objects which would be beneficial include (i) Contact information of all parties, (ii) Patient care plan, (iii) Patient’s medication list, (iv) Risk factors, (v) Updates to medical records, (vi) Patient medical summaries, (vii) Patient centred calendar (viii) Assessment of their homecare needs. An ICT solution implemented to meet these requirements must be integrated with existing systems to minimise any additional work that staff will have to do and also address major issues such as security, design of mobile applications (including both interface design and synchronisation issues), interoperability and ethical and legal aspects. Conclusion: This study has identified the information that needs to be shared at key intersection points between different actors involved in providing homecare for the elderly. It has also indicated how this information can be made available through ICT and highlighted the challenges that will have to be overcome in order to support patient centred care.
Background: Many caregivers with chronically ill relatives suffer from depression. However, the relationship of depression to other outcomes of chronic caregiving remains unclear. This study tested a hypothesized model which proposed that hours of care, stressful life events, social support, age and gender would predict caregivers' outcomes through perceived caregiver stress. Depression was expected to mediate the relationship between perceived stress and outcomes of chronic caregiving (physical function, self-esteem, and marital satisfaction).
Methods: The sample for this secondary data analysis consisted of 236 and 271 subjects from the Americans' Changing Lives, Wave 1, 1986, and Wave 2, 1989, data sets. Measures were constructed from the original study. Structural equation modeling was used to test the hypothesized model, and an exploratory structural modeling method, specification search, was used to develop a data-derived model. Cross-validation was used to verify the paths among variables.
Results: Hours of care, age, and gender predicted caregivers' outcomes directly or through perceived caregiver stress (p < .01). Depression mediated the relationship between perceived stress and psychological outcomes and explained 40% and 11% of the variance in self-esteem and marital satisfaction, respectively.
Conclusion: Depression predicted psychological outcomes. Whether depression predicts physical health outcomes needs to be further explored.
Introduction: There is growing evidence that cancer affects couples as an interdependent system and that couple-based psychosocial interventions are efficacious in reducing distress and improving coping skills. However, adoption of a couples-focused approach into cancer care is limited. Previous research has shown that patients and partners hold differing views from health care professionals (HCPs) regarding their psychosocial needs, and HCPs from different disciplines also hold divergent views regarding couples’ psychosocial needs. This study aimed to explore the perspectives of HCPs and couples on the provision of couple-focused psychosocial care in routine cancer services.
Methods: A qualitative study using semi-structured interviews was undertaken with 20 HCPs (medical oncologists, nurses, psycho-oncology professionals) and 20 couples where one member had been diagnosed with cancer (breast, prostate, head/neck, bowel, multiple myeloma). Interviews were analysed using the framework approach.
Results: Three core themes were identified: “How Do Couples Cope with Cancer?” emphasised the positive and negative coping strategies used by couples, and highlighted that partners perceived a lack of engagement by HCPs. “What Is Couple-focused Psychosocial Care for People with Cancer?” described varying perspectives regarding the value of couple-focused psychosocial care and variation in the types of support couples need among HCPs and couples. Whereas most couples did not perceive a need for specialist couple-focused support and interventions, most HCPs felt couple-focused psychosocial care was necessary. “How Can Couple-Focused Psychosocial Care be Improved?” described couples’ view of a need for better provision of information, and the importance of their relationship with oncology clinicians. HCPs identified a lack of confidence in responding to the emotional needs of couples, and barriers to providing psychosocial care, including challenges identifying distress (through screening) and referring distressed individuals/couples for specialist assessment.
Conclusions: The three core themes revealed discrepancies about couple-focused psychosocial care between HCPs and couples, and HCPs from different professional backgrounds, and several barriers to the provision of psychosocial care for couples. Despite HCPs and couples acknowledging that a couple-focused approach to psycho-social support was potentially beneficial, the majority of couples did not feel they needed specific couple-focused interventions. These issues and recommendations for future research are discussed.
BACKGROUND: Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses).
AIMS OF THE PAPER: To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents.
DESIGN: Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community.
FINDINGS: From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur.
CONCLUSION: This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent-professional relationships that are characterized by conflict rather than partnership.
This paper seeks to highlight the impact of the Carers (Recognition and Services) Act of 1995 on carers of people with learning disabilities. It draws on research conducted in the south west between 1997 and 1999, which examined the views and experiences of carers who had an assessment of their needs, together with those of the person they care for and the professional conducting the assessment. It concludes that the Carers Act is not widely used, or understood, by this group of carers. Recommendations for improving practice include changes to the current terminology, new triggers for a carer's needs assessment, and a greater input from other agencies, especially health services. Although the current paper focuses on the views and experiences of carers, an exploration of the Carers Act, and its effect on potential conflicts of interest with the person with learning disabilities, is available elsewhere (Williams and Robinson, 2001).
Statistics on service provision in Scotland to older people, people with learning disabilities, people with mental health problems, disabled people, carers and other users. Provides figures on domiciliary care, day care, residential care, private nursing homes, hospitals and special needs housing for each user group.
Original document (pdf) on the Scottish Government website.
The Essence of Care benchmarks are a tool to help healthcare practitioners take a patient-focused and structured approach to sharing and comparing practice. There are 12 benchmarks in total. This document outlines the benchmarks for communication, in order to support people and their carers to experience effective communication. It starts by listing the general indicators that apply to every factor: people’s experience; diversity and individual needs; effectiveness; consent and confidentiality; people, carer and community members’ participation; leadership; education and training; documentation; service delivery; safety; and safeguarding. It then lists the factors specific to communication, together with their supporting indicators. The factors are: interpersonal skills; opportunity for communication; assessment of communication needs; information sharing; resources to aid communication and understanding; identification and assessment of principle carer; empowerment to perform role; co-ordination of care; Empowerment to communicate needs; Valuing people’s and carers’ expertise and contribution; People’s and/or carers’ education needs.
Background: Schizophrenia as a chronic mental disorder not only has far-reaching consequences for patients, but also for their family members or other informal caregivers. In this study, we investigated whether needs for care of patients with schizophrenia are related to (negative) consequences for their informal caregivers.
Method: A total of 287 patients with schizophrenia and their informal caregivers participated in the EPSILON study of schizophrenia in five European countries. Caregiver consequences were measured by the Involvement Evaluation Questionnaire (IEQ) and needs for care by the Camberwell Assessment of Need (CAN).
Results: Total number of needs for care as well as specific areas of needs for care of patients appeared to be only weak predictors of caregiver consequences in terms of explained variance.
Conclusion: Subjective needs for care as measured by the CAN are not a good indicator for consequences experienced by the informal care system of patients with schizophrenia.
Models depicting the strain and burden that caregivers experience are well known. But none of the models include nutrition, despite its importance to health. About 20 percent of caregivers report changes of appetite and weight. In this article, the author explores nutritional status and its relationship to the experience of caregivers—and their care recipients.
As the age of the general population increases, the number of elderly people who need care is increasing. It has been suggested that rural carers may be disadvantaged compared to urban carers, but it is not clear what affect geographic location has on carers. This paper presents a systematic review of the literature on urban–rural comparisons on various outcomes for informal carers who provide care for elderly people in the community. Of 150 articles that were reviewed, eight articles were included with three themes in the outcomes for carers: service use, health promotion behaviors and psychological health (such as carer stress, burden or depressive symptoms). Overall, there were few consistent or statistically significant differences between urban and rural carers. Many of the differences observed were explained by other factors, such as carer or care recipient characteristics. The literature search was limited to papers in the English language, involving quantitative methods and published in peer-reviewed journals. There were not enough studies found to examine other outcomes or to pool data across studies. There is too little evidence comparing urban and rural carers to inform clinicians and policy makers. More good-quality research is urgently needed.
In its latest report on palliative care, the health committee of the House of Commons recorded the Department of Health's admission that the lack of palliative care for patients without cancer was the greatest inequity of all.1 In the United Kingdom, people die in hospices almost solely from cancer, although it accounts for only 25% of all deaths.1 w1 Yet patients dying from dementia have been shown to have healthcare needs comparable to those of cancer patients.2 The palliative care approach provides appropriate control of symptoms, emphasises overall quality of life, takes a holistic approach, involves the patient and the family in decisions, and fosters good supportive communication between all concerned.w2 Hence, it equates to person centred care in dementia.w3 w4 Evidence suggests a palliative care approach in dementia is favoured by formal and informal carers.3 The wishes of patients themselves, however, are hardly known—although preliminary results show high rates of satisfaction [...]
Although the vital role of informal carers has been acknowledged in government policy documents in the UK, the information needs of informal carers are not well documented. There is also uncertainty about where carers get their information from and whether they are satisfied with the information they receive. This study aimed to examine the information needs and sources of information for informal carers in the acute cancer setting; the informal carers of a sample of women treated for breast cancer. Both quantitative and qualitative data were collected from semi-structured interviews with 50 informal carers. Measures of information needs and sources were administered in addition to an in-depth exploration of information needs. The priority information needs of carers related to cure, spread of disease and treatments, a similar profile to that found for women with breast cancer in previous work. The main source of information for carers was the person they were caring for, although written information was also valued. Health professionals need to ensure that patients are well informed so that patients can provide information for carers and also need to take advantage of any opportunities to directly assess the information needs of carers to enable them to be more effective in their caring role.
Few family placement schemes involve adult persons, and rarely have they been targeted at older carers. Twenty-five carers, aged 55 years and over, of people with intellectual disabilities using one of two placement schemes in Northern Ireland were studied, along with a further 20 carers recommended for these schemes. Semi-structured individual interviews were used to obtain the views of carers, people with intellectual disabilities and placement providers. The placement schemes were very favourably received. Carers welcomed the break and valued the relationship with the placement provider. Individuals with disability reported greater opportunities to participate in activities. Placement providers were very satisfied with the way the schemes operated: the main complaint was the low level of payments. Key factors affecting the further development of services include recruitment of male providers, registration issues, training of providers and the difficulty in meeting the needs of multiply disabled persons.
The participation of service users with intellectual disability and carers is essential in medical and psychiatric training at all levels. It validates the training experience provided by incorporating service users’ and carers’ perspectives and their experience of mental illness/challenging behaviour, anxieties, interactions and feelings generated when dealing with professionals involved in their care, and also provides an understanding of expectations, views on met and unmet needs and how management options are best explained and communicated for meaningful participation in providing consent and in making treatment decisions. This article brings together the benefits of involving service users with intellectual disability and carers in teaching, discussing their roles as trainers, and providing practical tips to plan sessions as well as recognise and overcome barriers.
A short guide providing the key points for practitioners to consider when recommending a supported self-assessment for an adult requiring care, or for their carers with support needs under the Care Act 2014. It looks at delivering a supported self-assessment and at how local authorities can ensure that the supported self-assessment is an accurate and complete reflection of an individuals needs and outcomes. It then covers what needs to be done after the supported self-assessment and assurance process has been completed. Lists the benefits and challenges of supported-assessment and provides a check-list of core duties. The guide should be read in conjunction with the Care and Support (Assessment) Regulations 2014 and Chapter 6 of the statutory guidance.
Background: Case management has been applied in community aged care to meet frail older people’s holistic needs and promote cost-effectiveness. This systematic review aims to evaluate the effects of case management in community aged care on client and carer outcomes.
Methods: We searched Web of Science, Scopus, Medline, CINAHL (EBSCO) and PsycINFO (CSA) from inception to 2011 July. Inclusion criteria were: no restriction on date, English language, community-dwelling older people and/or carers, case management in community aged care, published in refereed journals, randomized control trials (RCTs) or comparative observational studies, examining client or carer outcomes. Quality of studies was assessed by using such indicators as quality control, randomization, comparability, follow-up rate, dropout, blinding assessors, and intention-to-treat analysis. Two reviewers independently screened potentially relevant studies, extracted information and assessed study quality. A narrative summary of findings were presented.
Results: Ten RCTs and five comparative observational studies were identified. One RCT was rated high quality. Client outcomes included mortality (7 studies), physical or cognitive functioning (6 studies), medical conditions (2 studies), behavioral problems (2 studies) , unmet service needs (3 studies), psychological health or well-being (7 studies) , and satisfaction with care (4 studies), while carer outcomes included stress or burden (6 studies), satisfaction with care (2 studies), psychological health or well-being (5 studies), and social consequences (such as social support and relationships with clients) (2 studies). Five of the seven studies reported that case management in community aged care interventions significantly improved psychological health or well-being in the intervention group, while all the three studies consistently reported fewer unmet service needs among the intervention participants. In contrast, available studies reported mixed results regarding client physical or cognitive functioning and carer stress or burden. There was also limited evidence indicating significant effects of the interventions on the other client and carer outcomes as described above.
Conclusions: Available evidence showed that case management in community aged care can improve client psychological health or well-being and unmet service needs. Future studies should investigate what specific components of case management are crucial in improving clients and their carers’ outcomes.
This examination of the extent to which carers services in Wales are accessible to Black and Minority Ethnic (BME) carers is located within the overall 'Caring about Carers - a Strategy for Carers In Wales (Implementation Plan)', a project initiated by the Welsh Assembly Government. Supported also by the Welsh Assembly Government, and carried out within the auspices of AWEMA (All Wales Ethnic Minority Association) as a BME Carers project, this study sets out to explore the needs of BME carers in Wales and the extent to which they felt that their needs were being recognised and addressed by mainstream services.
This paper considers the significant unmet psychosocial needs of the informal carers of cancer patients, drawing on data generated in a 3-year UK study (1997–2000) on the psychosocial needs of cancer patients and their main carers. While the needs of the carers of cancer patients are increasingly being recognised in healthcare policy documents, there is relatively little published literature on these needs. A ‘significant unmet need’ is defined here as a need deemed important by the carer, but which has not been met. A descriptive cross-sectional survey of carers was conducted and the responses of 195 carers relating to 48 psychosocial need items were analysed. A subset of these carers (n = 32) were interviewed. Forty-three per cent of carers had significant unmet needs. They were more likely to be those where the relationship to the patient was not that of a partner or spouse, more likely to have other caring responsibilities, and less likely to have friends or relations to call upon for help. Carers with unmet needs were also more likely to be in poor health themselves or to be caring for a patient who had reached the palliation-only phase in their cancer journey. The majority of carers expressed the importance of needs such as having good relationships with healthcare professionals and receiving honest information, but few expressed dissatisfaction with these aspects of need. Items of significant unmet need clustered around aspects of managing daily life, emotions, and also social identity for a sizeable minority of carers. These are the same areas of significant unmet need that concern patients. However, carers have more of these concerns, reflecting their comparative neglect. The paper also considers how these widespread concerns can be addressed.
Day care, as a type of care in between residential care and home help, has been available for several years, and is often referred to as an adequate alternative form of care for people with dementia. The goals of Swedish day care are to create a meaningful day for participants, offer family caregivers respite, and provide care for persons with dementia. The aim of this Swedish study was to describe day care clients with dementia problems over a 12-month period, and to discuss what distinguished those who discontinued day care from those who stayed with it. Of the clients, 76 percent were diagnosed by a doctor as having dementia between level one and four out of a total of six levels, according to the Berger rating scale of severity of senility. The results showed that one third of the people with dementia discontinued within four months. Another third dropped out within 12 months. People with behavioral problems and those who needed assistance with dressing and toileting discontinued earliest. All caregivers found some benefit of day care for their relatives and for themselves, with the exception of some caregivers of those who ended within four months. Most of the clients who lived alone at the start of day care, and ended within 12 months, went to a nursing home. Two differing conclusions may be drawn from the findings: (1) that offering day care services to persons with dementia who also show signs of behavioral problems is questionable; or (2) that the planning of day care in Sweden should be adjusted to also meet the needs of persons with behavioral problems, such as depression. In its current form, day care in Sweden seems only partially to fulfil its goals.
In July 2010, the Department of Health published a call for views on the key priorities, supported wherever possible by evidence of good practice that will have the greatest impact on improving carers’ lives in the next four years. In total, 764 responses were received. This strategy document identifies the actions that the Government will take over the next four years to support its priorities to ensure the best possible outcomes for carers and those they support, including: supporting those with caring responsibilities to identify themselves as carers at an early stage, recognising the value of their contribution and involving them from the outset both in designing local care provision and in planning individual care packages; enabling those with caring responsibilities to fulfil their educational and employment potential; personalised support both for carers and those they support, enabling them to have a family and community life; and supporting carers to remain mentally and physically well.
Background: Informal care is common in many countries, especially in Greece, where families provide care in hospitals. Health education and informational needs are important factors for family members which are often underestimated by nursing staff. The aim of this study was to compare the perceptions of the nurses and the in-hospital informal caregivers about the in-hospital informal caregivers' knowledge and informational needs, as well as the factors that influence these perceptions.
Methods: This was a non-experimental descriptive study conducted in three general hospitals in Greece. The sample consisted of 320 nurses and 370 in-hospital informal caregivers who completed questionnaires. Descriptive statistics were analyzed using t-tests; group comparisons were conducted using ANOVA.
Results: The score of the questionnaire for health education and informational needs was significantly greater for informal caregivers (57.1 ± 6.9 and 26.6 ± 2.8) than for nurses (53.4 ± 5.7 and 22.4 ± 3.1) (p < 0.001). For the nursing staff, the factors that influence the informational needs of patients' caregivers were level of education and working experience, while for the caregivers the level of education was independently associated with the score for the health education needs. Finally, age, marital status, and level of education of informal caregivers' were independently associated with informational needs.
Conclusions: The in-hospital informal caregivers perceived that they have more educational and informational needs than the nurses did. The findings of this study also show that the nursing staff has to identify the needs of in-hospital informal caregivers in order to be able to meet these needs.
"Caregivers are so overwhelmed by the demands of managing basic needs that they tend to only think of technology as tools to save time or provide safety," said Bill Novelli, founder of the Global Social Enterprise Initiative and Georgetown McDonough distinguished professor of the practice. "We need to eliminate the disconnect between the caregivers' ability to incorporate enriching technology into their care routines and their role in providing basic care for their loved ones." In addition to time constraints placed on the caregiver, the caregiver's perception of what defines successful aging focuses on the health of the adult for which they are caring. As a result, caregivers are viewing technology for aging well too narrowly and products aimed at caregivers primarily fall into the category of health and safety monitoring - which give caregivers comfort and peace of mind.
AIMS AND METHOD To assess whether postal questionnaires, used as a local initiative, were useful in identifying carer depression allowing early support for community-dwelling carers of older adults with mental health needs. The Geriatric Depression Scale and a questionnaire collecting information on the carer’s circumstances were sent to carers of consecutive patients routinely referred to a community mental health team for older adults in south London. Rates of carer depression between postal questionnaire responders and non-responders were compared.
RESULTS The response rate to the postal questionnaires (33%) was similar to that observed in other postal studies; 42% of responders had depression compared with only 4.6% of non-responders.
CLINICAL IMPLICATIONS Pre-contact postal questionnaires may present a simple method of enhancing early detection of carer depression for minimal economic outlay.
Integrated care has become too much a professionals' concept, in research and theory development, as well as in practice, especially in high-income countries. The current debate on integrated care is dominated by norms and values of professionals, while most of the care is provided by non-professionals. The paradigms of integrated care for people with complex needs need to be reconsidered. It is argued that non-professional care and care by local communities need to be incorporated as a resource and a co-producer of care. It seems fair to assume that the community as such can take a more prominent role in organising and delivering health and long-term care. This implies redefining professional and non-professional responsibilities and boundaries. The boundary between public and private space is losing its significance, as is the distinction between formal and non-formal care. It also requires renegotiating and transforming organisational boundaries. This has consequences for legislation, funding and professional qualifications, as well as for management and governance. It challenges current professional identities as well as identities of service users, their informal carers and citizens. It may also require new types of funding, including non-monetary currencies, time-sharing and social impact bonds. The challenge is that big, that it needs to be addressed at its smallest scale: the citizen in his social network and local community, being co-producer of really integrated care.
This study describes and analyses the kinds of support received by different categories of informal carers, and the kinds of help that care recipients receive in addition to that provided by various categories of carers. Data were collected in a Swedish county in 2000, by means of telephone interviews. The net sample consisted of 2,697 individuals 18–84 years old, and the response rate was 61%. The results showed that relatively few carers in any care category received any kind of support aimed directly at them as carers. The most widespread form of support received by providers of personal care was relief services. Those most likely to be receiving care from the public care system were people also receiving personal care from an informal caregiver. Nevertheless, the majority of those receiving personal care from an informal carer did not receive any help from the public care system or from voluntary organizations or for-profit agencies. These results indicate that social policy and social work need to clarify the aims of the services they provide. They also need to take the needs of both caregivers and recipients into account when discussing support systems.
The number of people from minority ethnic groups who are living with dementia is rising steeply, yet awareness levels and diagnosis rates are worryingly low. An Alzheimer's Society project , The Information Programme for South Asian Families (IPSAF), which provides culturally tailored information information sessions aims to help solve this problem. The service comprises a series of face-to-face sessions which helps carers to build their understanding, knowledge and skills of dementia. An educational DVD is also provided for carers to take home and share with family members. The programme was developed after consultation with 120 people with dementia, carers and professionals.
Much confusion still surrounds the concept of empowerment and how it is to be translated into practice within the context of community care for service users and carers. A major limitation has been the tendency to treat empowerment as synonymous with participation in decision-making with little attention given to the ‘ecological’ model of empowerment where linkages have been found between community participation and measures of psychological empowerment. Training has been suggested as a means through which carers might become empowered, yet to date little empirical evidence has appeared within the literature to support this proposition. This study investigated whether attendance on a training programme to empower carers resulted in improvements in carers’ levels of perceived control, self-efficacy and self-esteem as partial measures of psychological empowerment. The findings demonstrated that whereas carers’ knowledge of services and participation increased as a result of the programme, no changes were found in measures of carer empowerment. The failure to consider how training needs to be designed in order to achieve changes in individual competence and self-agency are suggested as the most likely explanation for the lack of change observed in carers’ psychological empowerment. It is suggested that community care agencies should focus greater energies in determining how the policy objectives of empowerment are to be achieved through training, and in so doing make far more explicit the supposed linkages between training content, design, and its posited impact on individual behaviour or self-agency.
Background: Carers of stroke survivors with aphasia are at risk of experiencing negative bio-psychosocial consequences and reduced quality of life. So far, in aphasia studies, this has mainly been explored through qualitative interviews and questionnaires. Unsolicited first-person narratives in the form of blogs offer a novel and rich source of data to examine how stroke and aphasia affect the carer and their relationship with the person with aphasia.
Aims: This study explored how carers of people with aphasia perceive their roles and responsibilities; it also examined the consequences of carrying out these carer roles and duties, in terms of both the carer’s own well-being and their relationship with the person with aphasia; furthermore, it investigated facilitative factors in their adaptation to the carer role.
Methods & Procedures: Publically available blogs written by carers of aphasic stroke survivors, which included information on how stroke and aphasia affect the carer and their relationship with the person with aphasia, were analysed using the Framework Method.
Outcomes & Results: The search resulted in nine carer blogs. The number of posts per blog ranged from 13 to 241. For blogs containing over 90 posts, the first and last 30 relevant posts were collected and analysed. New roles and extra responsibilities identified by participants included having to act as therapists, nurses, counsellors, and administrators and carrying out tasks usually assigned to the other person in the relationship. The extra tasks and duties impacted on the carers’ quality of life and their relationship with the person with aphasia in negative ways, such as leading to physical and mental exhaustion, health issues, feeling lonely, and resentful of their circumstances; however, participants also identified positive changes such as new closeness, new appreciation of life, and pride in achievements. A variety of strategies emerged from the data that helped carers adjust to their new roles. Strategies included positive reframing, allocating time to oneself, and seeking support from family and friends. The activity of blogging was also mentioned as having beneficial effects on the carers’ well-being.
Conclusions: The study provides further evidence for the specific challenges faced by carers of people with stroke and aphasia; it thus confirms the importance of addressing carer related needs in intervention and considering psychosocial well-being for both the carer and the person with aphasia.
The aim of this study was to gain knowledge about the specific needs that a web-based support system for young carers (YCs) must meet. Twelve young people with experience of caring for and supporting a close friend, partner or relative with mental illness (MI) were interviewed about their life situation, support needs and opinions about a hypothetical web-based support system. The transcribed interviews were analysed using content analysis. The analysed data were organised into three themes relating to support needs, each including a number of sub-themes: knowledge – understanding MI, managing the mentally ill person and self-care; communication – shared experiences, advice and feedback, and befriending; and outside involvement – acute relief, structured help and health care commitments. Web-based support for YCs may be a suitable way to meet the need for knowledge and to meet some of the needs for communication. We have outlined a concept of a geographically anchored web support to meet the need for befriending, facilitate connections to health and social care, and increase understanding and interaction between the parties involved. Further research is needed to corroborate the results.
The End of Life Care Strategy promotes high quality care for all adults approaching the end of life in England. Its aim is to provide people approaching the end of life with more choice about where they would like to live and die. It encompasses all adults with advanced, progressive illness and care given in all settings. It recommends a care pathway involving the following steps: identification of people approaching the end of life and initiating discussions about preferences for end of life care; care planning which includes assessing needs and preferences, agreeing a care plan to reflect these and reviewing these regularly; coordination of care; delivery of high quality services in all locations; management of the last days of life; care after death; and support for carers, both during a person’s illness and after their death. Ensuring that health and social care staff at all levels have the necessary knowledge, skills and attitudes related to care for the dying will be critical to the success of improving end of life care.
Although family members of cancer patients are at great risk of experiencing psychological distress, clinical tools to assist with recognizing and intervening with appropriate psychosocial care are sparse. This study reports on the first validation of the distress thermometer (DT) as a screening instrument for symptoms of depression and anxiety in family members of cancer patients. The DT was administered with the Hospital Anxiety and Depression Scale (HADS) in a sample of 321 family members. Receiver operating characteristics (ROC) demonstrated that the DT has good diagnostic utility relative to the HADS (area under the curve= 0.88 relative to the HADS anxiety scale; 0.84 relative to the HADS depression scale, respectively). The ROC curves indicate that using a cut-off of 4/5 maximizes sensitivity (86.2% HADS anxiety scale; 88.2% HADS depression scale) and specificity (71.2% HADS anxiety scale; 67.6% HADS depression scale); however, the alternative lower cut-off of 3/4 increases sensitivity (94.1% for both scales) and hence reduces the risk of missing distressed family members (specificity is 62.9% for HADS anxiety scale; 59.1% for HADS depression scale). The results offer validation of the DT for screening family members of cancer patients and support its use for clinical assessment. Distress screening with DT for family members of cancer patients is a promising and efficient approach to integrating family members in the program of care and provides the first step toward meeting their unmet needs with referral for supportive services. Copyright © 2008 John Wiley & Sons, Ltd.
I describe the development of a group in North London that aimed to increase the involvement of carers in the development and monitoring of mental health services across the borough. I enabled the carers to evaluate their experiences of the group using a participatory action research model. The evaluation was divided into two phases. Phase 1 focused on how the carers developed effective processes to facilitate the individuals in the group to represent not only their experiences but those of the collective. I describe how a critical incident facilitated this discussion and how the carers used the action research cycle to enable this change. Phase 2 enabled the group to reflect on their experiences of the group's impact upon them. The carers identified the following main themes of their experience of the group: shared experience of mental health stigma; empowerment and increased confidence; increased knowledge to enable them to care for themselves and their loved one more effectively, although this was tinged with a sense of frustration. In this process, I reflect on the vision that I had for Carers Against Stigma (CAS) as a user researcher and practitioner working with carers. I discuss the potential conflict that I faced as a practitioner and researcher initiating a carer‐led group. The theoretical implications of the individual service representative representing the views of the collective are discussed, and their needs for access and support to be involved in research and service evaluation are identified.
This paper highlights some of the challenges encountered when recruiting older people with heart failure into longitudinal, community-based research. It draws on the experience gained in a study to provide insights into the palliative care needs of older people with heart failure and the timing and need for service interventions. Five hundred and forty-two people with heart failure (New York Heart Association (NYHA) stages II-IV) and 213 of their informal carers were recruited from primary care practices in four areas of the UK. Ethical issues arising around gate-keeping, terminology and participant burden are discussed along with challenges faced during the recruitment process. Strategies to increase general practitioner and patient recruitment are provided. The paper concludes that prospective longitudinal studies are of particular relevance to chronic illness, and the complexity of setting up such research must be acknowledged and appropriately resourced.
This paper reports a welfare rights intervention for carers of dying people through seminars to help them organise family finances to deal with additional costs of the final illness, funeral costs and reconstruction of family finances after death. Seminars on financial affairs were provided to 103 carers and service users, and were evaluated by questionnaires. The seminars were very positively received by attenders, who felt better informed, but were not necessarily more confident in dealing with financial problems. The positive response was maintained for several months after the seminars. A number of features of the educational, business-like approach were potentially empowering, but this strategy needs to be part of a wider strategy of information-giving and support to meet the needs of carers for whom such an approach is not suitable.
In her talk, Sigrid Steffen will speak about the core aims of EUFAMI in respect to family members and carers. Sigrid will base a lot of her talk around her own personal experience as a carer of a son who was diagnosed with schizophrenia, and she will augment this with experiences of other members of EUFAMI from across Europe. She will elaborate on the stresses and strains under which family members (the carers) come under and will discuss the challenges which carers face on a daily basis. Her talk will also include a description of a typical 'journey' which carers and families travel in the execution of their caring role in an attempt to describe the various feelings and pressures they experience. Sigrid will also discuss what she understands to be the critical needs of carers and the level of support required. In particular Sigrid will concentrate on the stigma which families feel and experience during their lifetime, a aspect which is little understood and appreciated by the wider public. In conclusion, Sigrid will detail some of the work which EUFAMI has been and is involved with and which is related to the subject of her talk.
Objective: The objectives of this study were to: (i) obtain baseline data on the extent of carer involvement across a representative sample of hospital and community patients within an integrated area health service; and (ii) examine perspectives on discharge planning and community care among patients and their carers to identify information and resources they consider important.
Method: Over a 4-month period, inpatients before discharge and patients accessing community mental health services participated in face-to-face interviews. Information was collected about carer involvement and, with the patient's consent, the identified carer was sent a similar survey to determine demographics and information needs. This resulted in a representative sample of patients and carers accessing inpatient and community settings acrossa metropolitan mental health service. Support needs and carerburden were also assessed but are not reported here.
Results: A total of 407 interviews were completed, 207 in inpatient settings and 200 in the community. An inpatient response rate of 70% and a community response rate of 75% was achieved. Across both settings, 67% of patients identified a carer and a carer response rate of 28% was then obtained. We found carers and patients have different priorities regarding the information they want and information is often not provided to carers. Furthermore, patients were more confident in their ability to manage their mental health in the community than carers.
Conclusions: This study yielded important baseline data about the number of patients who have a carer. We were also able to determine that routine clinical information provided to patients and carers is inadequate from their perspective. It is anticipated that this initiative will assist ongoing service planning and improve partnerships with patients and their carers.
Mental health services are required to involve family, carers, and service users in the delivery and development of mental health services but how this can be done in routine practice is challenging. One potential solution is to prescribe practice standards or clear expectation relating to family involvement. This paper describes practice standards introduced to an adult mental health service and a study that aimed to evaluate the impact of the standards on practice. Hospital and community files were audited before and after the introduction of standards for evidence of participation and surveys of carers and consumers relating to the quality of participation were undertaken. Increases in documented carer participation were found, particularly in relation to treatment or care planning. The expressed needs relating to participation varied in hospital and community settings. The majority of carers and service users were satisfied with their level of participation. The introduction of practice standards is an acceptable, inexpensive, and feasible way of improving the quality of family and carer participation, but gains may be modest.
The article provides an overview on young carers the services they need within their community. It notes that young carers are individuals under 18 who provide primary care in their families due to parental addiction, disability, illness. Further, it states that parental absence due to divorce, desertion, or overseas military service can also serve as a ground for youth to become young carers. It mentions the negative impact of caregiving among young carers including the loss of childhood through having to provide care for other family members, poor social skills, and stress caused by conflicting needs and situations.
Few personalized e-interventions are available for informal and professional caregivers of people with dementia. The DEMentia Digital Interactive Social Chart (DEM-DISC) is an ICT tool to support customized disease management in dementia. The aim of this study was to improve and evaluate DEM-DISC, its user-friendliness and usefulness and to investigate the future implementation.
A cluster randomized controlled trial (RCT) design was used with measurements at baseline, 6 and 12 months. A total of 73 informal caregivers of people with dementia, supported by 19 randomized case managers participated in the study. In the intervention group, both carers (n = 41) and case managers (n = 13) could access DEM-DISC during twelve months. The control group, 32 carers and 14 case managers, had no access to DEM-DISC. Semi-structured interviews were conducted with ten stakeholders.
Informal caregivers who used DEM-DISC for twelve months reported an increased sense of competence than controls. A subgroup of users who frequently accessed DEM-DISC reported more met needs after six months than controls. Overall informal caregivers and case managers judged DEM-DISC as easy to learn and user-friendly.
This study demonstrates that using DEM-DISC had a positive effect on the sense of competence and experienced (met) needs of informal carers. This shows the importance of user-friendly ICT solutions to assist carers in finding appropriate care services tailored to their specific situation and needs. For further implementation of DEM-DISC methods to keep the information updated is of great importance.
This paper considers cash for care as reflected in direct payments and the more recent development of individual budgets in England. While the momentum to roll out individual budgets gathers pace in England, Wales has embarked on a more cautious approach in wishing to evaluate the impact of individual budgets on social services. The paper identifies some of the far reaching implications of cash for care in general and individual budgets in particular, for service users, carers ‐ both paid and informal ‐ and for the social work profession. The policy incoherence in relation to risk and safeguarding is highlighted. This paper supports the approach currently adopted by the Welsh Assembly Government in relation to the ‘rolling out’ of individual budgets. The Assembly's 10‐year strategy for social services focuses on the rights of citizens and the needs of communities. This paper argues that fulfilling that vision should not be wholly contingent upon an unproven extension into the field of individual budgets.
Additional written evidence presented to the Health Committee inquiry into the issues facing the future of social care, focusing on people aged 65 and older. The Committee looked at how a fully integrated system could be achieved with more efficient use of resources and the improved outcomes that it could deliver. Other issues discussed in volume 1 (the full report) are commissioning, the funding and staffing integrated services, the needs of carers, and the Dilnot Commission. Volume I contains the full report and recommendations; Volume II oral and written evidence.
Rationale: A growing number of middle-aged people are engaged in informal care of their parents while employed. To provide support as employers, co-workers or staff, health care professionals need insight into the experiences of people managing these responsibilities.
Aim: To elucidate the experience of providing informal care to an ageing parent while managing the responsibilities of a working life. Methods: Narrative interviews were performed with 11 persons with experience of the phenomenon. Transcribed interviews were analysed with phenomenological hermeneutics. Ethics: Informed consent was given prior to the interviews. The study was approved by a research ethics committee.
Findings: Providing informal care to an ageing parent while also pursuing a working life implies seeking balance: a balance between providing support to the parent’s needs and one’s responsibilities at work. Being employed supports this balance as it provides both fulfilment and refuge. Being capable of managing both roles grants a sense of satisfaction, supporting one’s sense of balance in life. The balance can be supported by sharing the responsibility of caring for the ageing parent with others.
Study limitations: Despite perceived saturation and an effort to provide for the possibility to consider internal consistency, the findings should be considered as a contribution to the understanding of the phenomenon, as experienced by individuals in their life world.
Conclusions: It is essential to recognise the impact that providing care for an ageing parent may have on the lives of a growing number of people, particularly if they have employment responsibilities. Acknowledgement by others supports one’s ability to attain balance; as co-workers and managers, we can acknowledge the efforts of an informal caregiver and as health care staff recognise the valuable contribution made by people in mid-life who provide informal care for their ageing parents.
Although Jean Tottie had worked in health and social care for 35 years, mostly in older people's services, nothing prepared her for her caring role. She found it a huge struggle trying to get the right care at the right time for her father so that he could stay living independently at home; so much so that she did not recognise her own needs. Here is Jean's story.
Objective For many patients with chronic conditions, such as chronic obstructive pulmonary disease (COPD), the assistance of family carers with medicines is vital for optimal treatment outcomes. The aim of this study was to identify the assistance carers provide to patients with COPD using nebuliser-delivered therapy at home, and the problems experienced that may impact on the safety and effectiveness of therapy and contribute to carer burden.
Methods A cross-sectional, qualitative descriptive study was conducted with participants recruited from primary and intermediate care. Home interviews were conducted with 14 carers who assisted a family member with COPD using a nebuliser. Qualitative procedures enabled analysis of nebuliser-related activities and problems experienced by carers.
Results The carer sample included 10 female and 4 male carers, with a mean age of 61 years: 11 spouses and 3 daughters. They had assisted patients with use of their nebuliser and associated medications for, on average, 4.5 years. Assistance ranged from taking full responsibility for nebuliser use to providing help with particular aspects only when required. Nebuliser-related activities included assembling and setting up equipment, mixing medicines, operating the device, dismantling and cleaning equipment. Difficulties were described with all aspects of care. Carers reported concerns about medication side effects and the lack of information provided.
Conclusions The study revealed the vital role of carers in enabling effective therapy. The wide-ranging responsibilities assumed by carers and problems experienced relate to all aspects of COPD management with nebulisers, and have a potential impact on treatment outcomes and carer burden. A systematic approach to addressing carers’ needs and prioritising support would be anticipated to have positive consequences for patients, carers and health services.
One common myth about ethno-cultural minority family caregivers is that they do not use formal services. This study examined the intention of using home support and long-term care facilities by a random sample of 339 Chinese-Canadian family caregivers, using a modified version of the Andersen-Newman service utilization model. Filial piety, caregiving burden, care receivers, and health conditions are the common predictors identified. Filial obligation is most likely manifested through facilitating the care receivers to make use of the services needed, particularly for caregivers who reported a high level of caregiving burden.
The government strategy 'Caring About Carers' acknowledges that state care provision can never replace that of informal carers. Nurses working in primary and community health care potentially have a key role in identifying informal carers, meeting their health needs and ensuring they know of their rights to an assessment under the Carers Act.
With an aging population who wish to remain living in the community, this article explores the experiences and benefits of receiving volunteer services from a home support program established to assist people with increasing needs to remain living independently. Face to face interviews explored how the services of informal carers (volunteers) provided through the program made a difference to the daily lives of 16 recipients. Improved life satisfaction was identified through the themes of being helped with daily activities, positive human contact, and fear of a poorer quality of life. It was found that addressing recipients' social, emotional, and mobility needs supported them to remain living at home.
Understanding how long-term illness affects quality of life for patients and families is central to providing individualised, patient-focused care in the community, as Leire Ambrosio and colleagues explain
Parkinson's disease (PD) is a long-term condition that affects patients' and carers' quality of life. It is important to develop and implement new approaches that bring together health and psychosocial care for people living with chronic illnesses such as PD. The authors emphasise the role of primary care nurses in supporting patients and their informal carers, and outline how practitioners can focus care on patients' psychosocial as well as physical needs. The article includes a literature review of the process of living with PD and discusses the development and implementation of interventions based on assessments tailored to the individual needs of patients and their carers.
Approximately 1,500 people a day die of cancer. Most are cared for by an informal caregiver. The purpose of this study was to identify the unmet spiritual needs of informal caregivers and explore the relationships between the patient's symptom distress, caregivers' unmet needs, and caregivers' depressive symptomatology at the time of admission to hospice. The sample consisted of 110 caregivers of hospice home care patients with cancer. The Spiritual Needs Inventory and Center for Epidemiological Studies Depression Scale were administered to caregivers of newly admitted patients. The Memorial Symptom Assessment Scale was administered to patients. Regression analysis and correlations were calculated. An average score of 56.4 (possible range, 17-85) on the Spiritual Needs Inventory with a range of 0 to 13 unmet needs was reported by caregivers. Frequently cited as needed or unmet needs were those that related to outlook in life. Caregiver outlook, religious practices, and patient distress score predicted 17% of the variance in the unmet needs score. The unmet needs scores were significantly related (F [1,106] = 13.41) with the caregivers' Center for Epidemiological Studies Depression Scale scores. The study concluded that caregivers have specific spiritual needs that are not being met. Routine assessment of unmet spiritual needs facilitates caring for caregivers. To provide good end-of-life care, assessment of spiritual needs with a standardized instrument is recommended.
This paper reports the findings of a literature review conducted to investigate user responses to assisted living technologies (ALTs), principally telehealth and telecare applications. A combination of search terms identified approximately 75 relevant publications, including reports of studies in the US, Australia, Europe and the UK. The documents were analysed to extract data relating to end-user needs, what attracts end users and informal carers to telehealth/telecare services, and what deters them from adopting these technologies. Some key challenges arising for the uptake and adoption of ALTs are then discussed, and significant user requirements emerging from the evidence are identified. The paper concludes with suggestions for the next steps to be taken to promote effective and appropriate use of ALTs.
The Law Commissioner has recommended changes to carers rights in its proposals to overhaul adult care law. The changes could help social workers to highlight the needs of hidden carers.
Helping people to understand what mental illness is and means to people who are affected by it can be difficult, but a set of resources has been developed by a person with bipolar disorder to help address the problem. The 'Choices Method' consists of a series of boards covering a range of mental health conditions which are designed to promote a free exchange of feelings and information between those experiencing mental illness and those supporting them. The method has been independently tested by a UK university and has been found to improve learning and knowledge retention as opposed to other methods. Future projects include the development of a board game for young carers which targets bullying and a board game for people with dementia which charts a day in the life of a person with dementia and those who care for them.
Informal carers are people who provide care without a specific professional role. They provide diverse caregiving supports including disease-related problems, side effects of treatment and psychosocial impacts. This paper reports on a comprehensive review of caregiving literature, focusing specifically on cancer caregivers. The paper presents five observations drawn from the literature in order to make recommendations about how caregivers of people with advanced cancer can best be supported. The observations are: 1) caregivers are a heterogeneous group; 2) they have unique needs that differ to the patient; 3) their role includes more than attending to physical caregiving tasks; 4) they may feel unable to take a break from the role and 5) they need their own support which may be beneficial to their capacity to continue in the caregiving role. Recommendations for how health professionals can assist in supporting caregivers in their role are discussed.
This paper critically examines the trend within dementia care to focus either on people with dementia or their informal carer. Attention is given to the alliances and collusions that may develop within triads comprising people with dementia, their carers and dementia care practitioners and the implications for this upon the distribution of power. The paper outlines an inclusive model of dementia care in which the needs of the person with dementia, family carers and the dementia care practitioner are understood in terms of inclusion. In addition, the paper shows how the model may be used to enhance practice in dementia care, particularly how practitioners can ensure that both people with dementia and their carers are included within decision making processes. The role of supervision is noted as a way that dementia care practitioners may gain worthwhile insights into the alliances and collusions that can impede practice within dementia care.
Government policy in Sweden, as in other developed countries, pays increasing attention as to how best to support the family carers of older people. New and innovative means of support, such as information and communication technology, are emerging. This paper explores the perceived benefits of, and barriers to, information technology as a means of supporting family carers of older people. Following a brief overview of the care-giving literature, with particular reference to the Swedish context, interview and questionnaire data collected from 34 families who took part in the Swedish ACTION project are used to explore the role of user-friendly information and communication technology to inform and enable family carers of older people to exercise choice, to care more effectively and to work in partnership with professionals. Interview data from two groups of professionals that utilised ACTION are also examined to throw light on its potential benefits for both carers and professionals. Consideration is given to the barriers to using information technology, and to identifying those carers most likely to benefit. Areas for further development are the need for practitioners' education and a wider range of programmes to address carers' diverse needs. Clearly, lessons learned from the Swedish project have wider relevance, given that new forms of support are being developed in most technically advanced countries.
Commentary on research by Jarvis et al. about the needs and experiences of informal carers of older people, commenting on the research instruments used and interpretation of carers' responses. A response from the original authors is included. [(BNI unique abstract)]
Purpose – This paper aims to examine the barriers and enablers to working together in social care, focusing on the experiences of carers and practitioners.
Design/methodology/approach – The project employed a change project method which brings research and practice together to identify a problem, seek ways to resolve it, and develop resources to implement the learning in practice.
Findings – The main findings substantiate much of the existing evidence in this area: the way people are treated by practitioners and services is as important as the outcomes they seek; there is a need to improve understanding and recognition of carer expertise; and there is a tension, for practitioners, between working within resource‐bound systems and implementing a needs‐led and person‐centred cultural service. It demonstrates that when shared learning is focused on action, i.e. learning through doing, relationship‐building becomes an intrinsic part of the process.
Research limitations/implications – The project involved a limited number of participants, and this article shares interim findings only.
Originality/value – The project has used an action‐research approach.
Background: Empathic and informative interactions with health professionals are important for the well-being of people with cancer. However, there is a dearth of research examining the construction and experience of interactions with health professionals from the perspective of informal cancer carers.
Objective: The aim of this study was to explore how cancer carers subjectively position their experiences of interactions with health professionals, in particular, their construction of experiences as positive or negative, and the perceived consequences of such interactions. Positioning theory is used to examine how the sociomedical construction of health professionals shapes carers' experiences of interactions with them.
Method: Semistructured interviews were carried out with 53 informal cancer carers across a range of cancer types and stages, analyzed using thematic decomposition.
Results: Carers positioned positive interactions as those involving health professionals who were warm and genuine, accessible and approachable, and who made carers feel accepted and comfortable. In the case of allied health professionals, the provision of a space for carers' cathartic release was also constructed positively. Negative interactions were positioned as those involving poor communication and a lack of empathy, poor or absent information provision, and absence of guidance about additional support.
Conclusions: Positive experiences with health professionals were positioned by carers as leading to feelings of empowerment, value, and recognition, and negative interactions as leading to distress, anger, frustration, and feelings of isolation.
Implications for Practice: It is important for health professionals to be supportive of carers' needs, to communicate in an empathic manner, to be approachable and accessible, and to recognize carers needs and concerns.
This briefing paper is about the findings and recommendations from a research project conducted at the University of Nottingham, with funding awarded by Macmillan Cancer Support. The project was set up to study the experiences and main support needs of older carers* looking after someone with advanced cancer and to facilitate the active involvement of carers in the research process.
Researchers and practitioners in several Western countries have recently developed tools for assessing the situation of the carers of adults who are ill, elderly or have disabilities. The present article describes the impact of three such assessment tools, from Canada, the UK and Sweden, on the professional practice of assessors. All tools were tested in agency-based studies. Focus groups, workshops and interviews with assessors were employed to understand the impact on professionals and their practice. An Australian researcher and case manager comments on these experiences from her unique perspective. The results reveal that the use of carer assessments can lead to changes in the appropriateness of intervention by informing practitioners of issues which are given little attention, but which impact on the adequacy of interventions to the service user. Across the projects, most workers found that the tools facilitated a more comprehensive, in-depth and carer-focused assessment. Experience across all the projects suggests that, used sensitively, such tools and approaches can play a key role in transforming the relationship between carers, and the health and social care system. Giving carers a legitimate voice, acknowledging their perspective and expertise, and making them central to assessment processes accords them status both as active partners, and as individuals with their own needs and aspirations, rather than seeing them primarily as resources. As a result of their experiences, many workers and administrators concluded that home-care programmes must change their mandate to include carers among their clients, raising the issue of available monetary and human resources to meet the needs of this group. In addition, as our Australian colleague points out, time, efficiency, relevance, benefit and minimal intrusiveness are important factors for practitioners which influence their use of assessment tools.
This article reports the findings of a literature review of research that has explored the support experiences of family carers of a person with an intellectual disability who displays challenging behaviour and/or has a mental health problem. The purpose of this review is to provide an overview of the reported experiences of family carers from recent research studies, about their own support. Having discussed the search strategy, definitions of challenging behaviour and mental health/illness are presented. Evidence concerning the needs of carers and the extent to which they are met is explored, and the need for consistency and good communication are highlighted. Conclusions are drawn and recommendations made for the development of future research and practice.
This article analyzes the panorama of care provision in Sweden from the informal carers' perspective. We consider informal care, publicly financed services, for-profit agencies and voluntary organizations, using a survey conducted in 2009. Most cared-for persons with minor needs living in a separate household are helped also by others, but only a tenth use public services or other providers. About half of cared-for persons with major needs living in a separate household receive care also from other informal carers as well as public services. Only 1 in 10 of them relied on no one else beyond the carer interviewed. Among intra household carers—a minority of all persons cared for—it was common that the carer was alone in his/her commitment, without any contributions from public services or others. For the large majority of informal carers it is not a solitary undertaking as the commitment is often shared with family members and others and/or public services. The results suggest that ideal types about complementarity and substitution may understate the complex interplay between informal care and the public services (and potential other providers). The findings may suggest a need for more empirical research about ‘Care Cultures’ and expose simplistic representations of welfare societies; informal care plays a major—and increasing—role also in Sweden, a country with extensive public services.
Support for family caregivers is a core function of palliative care. However, there is a lack of consistency in the way needs are assessed, few longitudinal studies to examine the impact of caregiving, and a dearth of evidence-based interventions. In order to help redress this situation, identification of suitable instruments to examine the caregiving experience and the effectiveness of interventions is required. A systematic literature review was undertaken incorporating representatives of the European Association for Palliative Care’s International Palliative Care Family Caregiver Research Collaboration and Family Carer Taskforce. The aim of the review was to identify articles that described the use of instruments administered to family caregivers of palliative care patients (pre and post-bereavement). Fourteen of the 62 instruments targeted satisfaction with service delivery and less than half were developed specifically for the palliative care context. In approximately 25% of articles psychometric data were not reported. Where psychometric results were reported, validity data were reported in less than half (42%) of these cases. While a considerable variety of instruments have been administered to family caregivers, the validity of some of these requires further consideration. We recommend that others be judicious before developing new instruments for this population.
This code provides guidance to the Part 3 of the Social Services and Well-being (Wales) Act 2014, setting out a process for assessing the needs of an individual for care and support, or support in the case of a carer; a process of assessment that will apply to all people – children, adults and carers; and a process of review and re-assessment that will apply to assessments. Underpinning the changes introduced by the Act is the need for more effective arrangements that are used and understood by all practitioners in their work with individuals and to ensure that practitioners work with people to identify what matters to them, and identify their strengths and capabilities is central to the system.
One of the major reasons for admission of patients to hospital in late stage disease is the inability of carers to continue to provide care at home. Specialist palliative care services have typically admitted patients for acute symptom control, terminal care and respite care to benefit them and their carers. This paper reports the results of a cross-sectional survey of inpatient respite care provision provided by specialist palliative care services and hospices in the UK. A structured questionnaire was mailed to 242 clinical services managers listed in the Hospice Information Directory in 2003. A 69% response rate was achieved. The questionnaire explored the nature of respite services, their purpose, organization, delivery and examined definitions used. The analysis indicated that 80% of the sample provided inpatient respite care. Most inpatient respite admissions were planned, of fixed duration (7–14 days) and were intended to benefit patients and carers. There was some evidence that respite provision was regarded as a lower priority than admissions for symptom control and terminal care, and that patients' needs were prioritized over those of carers. Only 10% of services conducted regular, routine audit, with very few seeking the views of service users. Findings suggest that carers' needs and wishes are not prioritized by specialist palliative care services offering inpatient respite, which may mean that they find it difficult to maintain their caregiving roles over longer disease trajectories or in the face of overwhelming demands.
The NHS Plan, Department of Health (2000) made a commitment that patients should be able to receive copies of clinicians’ letters about them as a right in order to improve communication and enable patients to participate in their care. In South Gloucestershire, the opinions of local service users with learning disabilities, their carers, and professionals working within learning disability services about this issue were sought using questionnaires and focus groups in order to identify and then develop good practice. A number of practice issues were identified: protocols for developing individualised accessible information are needed, involvement of service users in the management of their information and maintenance of its confidentiality, and involvement of carers in the sharing of information, if this is appropriate. A communication strategy needs to be developed by services working with people with learning disabilities, in conjunction with service users and carers. The resource and training implications of this area of service development need to be considered.
Recent research in Northern Ireland examining the needs and circumstances of informal carers has highlighted the personal and financial costs of caring. In this paper it is argued that these studies have taken no account of the particular expectations and attitudes towards informal care that exist within farm families. In these families there is a strong expectation that care for older relatives will take place almost entirely within the family. The reputation of the farm family within the local community is strongly dependent on their treatment of the older generation. Help from the state and the voluntary sector is extremely limited. Rather than being described as burdensome and difficult, these family arrangements are described as beneficial for everyone involved. It Is argued that expectations and attitudes towards care within farm families are significantly different from those in non-farm families and policy makers and practitioners must take account of this in the context of care in the community.
A national study of patients with motor neurone disease (MND) and their carers was conducted in Scotland in late 1996. A questionnaire covering areas such as: use of medical, social and voluntary services; use of or waiting for specialised equipment; satisfaction with provided services; and standard demographic data was used in face-to-face interviews conducted by the four Scottish Motor Neurone Disease Association care advisers. The care advisers also assessed the respondent’s level of impairment, using a standard instrument: the Amyotrophic Lateral Sclerosis Severity Scale (ALSSS). The data was analysed using SPSS-PC. In total 153 people participated (response rate 92%), and as expected with this patient group the study recruited more men (57%) than women. Sixty per cent of the sample was severely disabled as measured on the ALSSS. Health services did not meet the needs of respondents in 19% of the cases and social services failed to do so according to 24% of respondents. Eighty per cent of patients with MND had an identified carer. Nearly four out of 10 of these carers had their sleep disturbed regularly, and nearly a quarter of them would have liked to have more help. In addition, differences were found in service provision between the East and West of Scotland, and consequently differences in respondent’s perceptions about the extent to which needs were met. As found in similar studies, the formal health and social care sectors in conjunction with voluntary organisations are only partially managing the trajectory of patients with a rare progressive degenerative disease.
Family care-givers play a vital role in the support of people with dementia. In addition to opportunity costs, care-giving has been linked to a wide range of negative outcomes, including psychological disturbance, physical health problems, relationship changes and social activity restrictions (Donaldson et al, 1997). Carers identify access to information and training as an essential requirement in their struggle to continue in the care-giving role (Blackwell et al, 1992). To what extent are these training needs currently met? Despite an undoubted demand, few training initiatives exist for informal carers, or indeed for formal home care staff, a deficiency which has prompted a European Union project to develop a training package for family carers of elderly people with dementia (O'Donovan et al, 1997; Turner & Street, 1999).
Negative social attitudes, discrimination, and homophobia affect gay, lesbian, bisexual, and transgender (GLBT) individuals during their lifetimes. These experiences can affect how these individuals access health services and interact with health professionals, resulting in adverse outcomes compared with their heterosexual counterparts. End-of-life experiences can also be shaped by these factors. There are implications for health professionals in terms of equity of access to targeted health care, preventive screening, and visibility in policy, as well as in principles of inclusiveness, dignity and respect, and competence in care. This article takes a brief look at some of the issues specific to the end-of-life care of GLBT individuals, using a case study as an illustrative example. Holistic care at the end of life is a familiar concept to palliative care nurses, but it is important to place greater emphasis on considering competence in aspects of care relating to sexuality.
The role of the district nurse (DN) is difficult to define. Knowledge about the perspectives of patients with cancer, and their informal carers, on the roles of DNs and community services is lacking. The aim of this study is to identify the roles of DNs and community services as perceived by patients with cancer and their carers before and after hospital discharge. Seventy-one pre- and post-discharge conversational interviews were conducted with cancer patients and carers, and analysed thematically. Some interviewees lacked knowledge about services, were confused about differential roles and/or held stereotypical views. Some failed to disclose needs to services, received insufficient support or experienced unnecessary and inconvenient visits. Patients with few or no physical care needs were surprised to receive DN visits. Those receiving personal care from agency carers expressed dissatisfaction. Cancer patients and carers may benefit from post-discharge/ongoing assessment by DNs. However, effectiveness could be inhibited by limited disclosure caused by confusion, stereotyping, negative experiences and ideas that other patients have greater needs. Information might diminish these factors but, first, services need to clarify their roles. Organization and delivery of personal care services varies locally and DNs provide personal care during terminal illness. Community services should perform intra- and interservice clarification before publicizing differential roles to cancer patients and carers. This might facilitate disclosure of need to DNs. Patient and carer needs for information on service roles, and patients’ preferred roles in self-care are under-researched.
While the financial, physical and psycho-social burden for caregivers is recorded, less is known about the post-caring experience. The purpose of this qualitative descriptive study was to explore the experiences and needs of Irish former family carers in the post-caring/care transitions period. Former family carers were defined as family members who provided physical and/or social care to a family member with an illness or disability in the home for at least 6 months prior to nursing home/hospice placement or death. A total of 40 family carers were recruited from members of or known to voluntary care groups/associations in Ireland. Fourteen participants took part in a focus group discussion and 26 participated in one-to-one, semi-structured interviews, all of which were undertaken in 2010. The focus group discussion focused on gaining a broad understanding of the participants' post-caring experiences and the emergent themes formed the basis for the development of a semi-structured interview guide. Data from the focus group were analysed inductively using Creswell's qualitative analysis framework, while template analysis was the method of analysis for the 26 individual interviews. For the participants in this study, post-caring was a transition that comprised three, interrelated, non-linear, iterative themes that were represented as ‘loss of the caring world’, ‘living in loss’ and ‘moving on’ and symbolised as being ‘between worlds’. Transition was a complex interplay of emotions overlaid with economic and social concerns that had implications for their sense of health and well-being. This exploratory study begins to address the dearth of data on post-caring/care experiences, but further research is needed to inform support interventions to enable former family carers to ‘move on’.
Objective: To review non-drug treatments for dementia; to provide a source of evidence for informal carers who want ideas about non-drug approaches for dementia, that they might try or that they could try to access. The systematic review addresses: what non-drug treatments work and what do they work for? What non-drug treatments might work and what for? What non-drug treatments do not work?
Methods: Literature searches of seven electronic databases (AMED, CINAHL, EMBASE, MEDLINE, PSYCINFO, Cochrane Library of Systematic Reviews and DARE) were carried out in November 2007 using the following search terms (or derivatives): dementia/Alzheimer's AND Review AND non-drug therapies and aimed at finding systematic reviews.
Results: Thirty-three reviews were identified; 25 were judged to be high or good quality. Studies within these systematic reviews were characterised by weak study designs with small sample numbers. Three interventions were found to be effective for use with particular symptoms of dementia: music or music therapy, hand massage or gentle touch and physical activity/exercise.
Conclusions: Whilst informal carers can apply some of the interventions highlighted in the home setting at little or no cost to themselves or to health or social care services, others are likely to require training or instruction. Service providers and commissioners should explore current and future provision of more structured group activities for people with dementia; in particular the provision of group music therapy and group exercise activities that meet the needs of both the person with dementia and their carer. Copyright © 2009 John Wiley & Sons, Ltd.
The article focuses on a strategy meant for providing support for carers across Northern Ireland. The strategy quotes census figures indicating that there are more than 185,000 unpaid carers in Northern Ireland, equating to about 11 percent of the population. Carers need some help and support to enable them to continue in their caring role. The strategy include the identification of those acting in a caring role, information for carers, support services, the special needs of young carers and training and employment.
Experiencing and managing a long-term condition places heavy emotional demands on a patient or carer. We conducted disease-specific focus groups for patients or carers. We recruited adults with diabetes, heart disease or hepatitis C, parents of children with asthma or diabetes, and carers of people with Alzheimer's disease. Participants had sole access to a PC and were asked to use three Internet interventions, each for 30 min. We conducted 10 disease-specific focus groups in three areas of the UK, involving a total of 40 participants. Three main themes emerged from the data: dealing with negative emotions, boosting positive emotions and social support. Designers of Internet interventions should consider users’ emotional needs and how to meet these needs with every section or facility within an intervention.
Carers are often too wrapped up in their duties to think about their needs. This article reports on a pilot project in Kensington and Chelsea, run by charity wpf Counselling and Psychotherapy and funded by the council. The project aimed to offer carers of older people and people with mental health problems counselling to help them gain independence. The article also contains a brief case study.
Statutory guidance on social care assessment for adults, children, young carers and adult carers in Scotland which explains who those duties are affected by the introduction of the Social Care (Self-directed Support) (Scotland) Act 2013. It provides guidance on each stage of the person's pathway through support, including: the provision of information, support and advocacy; assessment and eligibility criteria; the duty to provide choice; support planning; and the role of the NHS and combined budgets.
The Department of Health carried out a consultation process on the future strategy for adults with autistic spectrum conditions (ASC) which closed on 15 September 2009. Over 1,100 responses were received, including from people with ASC, families and carers, voluntary sector organisations and health and social care bodies. This document is a summary of the findings from the consultation, setting out the approach taken, and the key themes and priority actions identified by respondents
Primary carers provide much of the day-to-day care for community-dwelling people living with dementia (PWD). Maintaining that contribution will require a more in-depth understanding of the primary carer role and the support needs that flow from that role. This study explored patterns of formal and informal support utilisation by people caring for a PWD in a rural-regional context. In-depth semi-structured interviews were conducted with 18 rural primary carers of a PWD and thematically analysed. Participant primary carers' almost total commitment to, and absorption in their role and their assumption of ultimate responsibility for the PWD's wellbeing meant that external social context, such as rurality, became less relevant. Carer networks effectively contracted to those key individuals who were central to supporting them in their caring task. External sources of support were tightly managed with strong boundaries around the provision of direct care to the PWD largely excluding all but professional providers. Primary carers are generally categorised along with other family and friends as informal care. However, in assuming primary responsible for the care and wellbeing for the PWD they effectively become the key care provider, suggesting that it would be productive in both research and practice to treat primary carers as key members of a care partnership alongside professional carers, rather than as adjuncts to formal care and/or another client.
Despite the acknowledged increase in the number of older people with intellectual disabilities (ID) in the UK, the age-related health and social care needs of this population have yet to be fully understood and addressed. Although there is some evidence of positive development, the current picture of service provision is characterized by fragmentation and limited choice of resources and specialist care. Policy aims are variably met and inconsistently applied. Research suggests that service planning is often incoherent, that many older people with ID and their carers receive poor quality non-specialist care and that staff are inadequately trained to manage the often multiple and complex needs of this user group. There is a considerable co-joined service development and research challenge in this emerging field. If older people with ID and their carers are to receive quality provision, a coherent and well-funded service planning system is required which is underpinned by articulated agency partnerships, informed by good practice developments in the fields of ID, gerontology and dementia care, and linked to evidence about effective models of care and services. The incorporation of the perspectives of users and carers in the planning process is an essential pre-requisite as is a commitment to the development of effective support across the life course of all individuals with ID.
Objectives: To understand how carers of dementia sufferers gain access to community support and to determine potential barriers for carers.
Design: Qualitative study using semi-structured interviews of carers after an Aged Care Assessment Team intervention.
Setting: Australian metropolitan Aged Care Assessment Team.
Subjects: 24 live-in carers of dementia sufferers.
Main outcome measures: Carers' subjective experience of sources of stress in their care of the dementia sufferer focusing on interactions with the general practitioner and formal community support agencies.
Results: Most carers suffered high levels of stress, mainly due to behaviour disturbances and care needs of the dementia sufferers. Problems with health care agencies were also reported by a majority of the carers to be contributors to their distress. General practitioners were perceived to have referred dementia sufferers late for community care, despite the carer having experienced difficulties for a considerable time period. Carers also complained that too little information was provided about the diagnosis of dementia, how to deal with problem behaviours and how to access support services before and after the assessment procedure.
Conclusions: Problems with the interaction between the carer and the general practitioner appear to be important in delaying access to appropriate support and information. Earlier recognition of carers' problems, the provision of better education and earlier access to support services may lessen the degree of stress experienced by carers. Copyright © 2000 John Wiley & Sons, Ltd.
People with learning disabilities have high dependency needs and high prevalence of physical, psychological and social morbidities. Some studies have shown that South Asian and white populations have a similar prevalence of learning disabilities and related psychological morbidity (McGrother et al, 2002), although other studies have shown an increased prevalence of severe levels of learning disabilities in the South Asian population (Emerson et al, 1997). The aim of this study was to compare stress levels and unmet service needs in informal carers of South Asian and white adults with learning disabilities.A sample of 742 informal carers was selected from the Leicestershire Learning Disability Register. Data on carers' and subjects' demographic details, stress levels and unmet service needs were analysed and compared using chi‐square tests and logistic regression analyses. Substantial differences were observed between the two groups. Carers of South Asian adults with learning disabilities reported significantly higher levels of care provision and unmet needs. Major stress was reported in 23% of carers. This was more common in carers with poor health, in those caring for younger adults, carers of adults with psychological symptoms, and in those with an expressed need for moral support or respite care.Stress is common among informal carers of adults with learning disabilities and inequalities, in reported care given and unmet needs, exist between carers of South Asian and white adults. Practitioners need to be aware of factors associated with stress when assessing carers in this population.
The aims of this study were to: (a) identify New Zealand informal carers' support needs; (b) assess caregivers' depression; and (c) assess positive and negative aspects of caregiving. A sample of 287 carers from throughout New Zealand was recruited by advertisements in carer support organizations literature, in 2008. Data were collected using Centre for Epidemiologic Short Depression scale (CES-D10), Caregivers Reaction Assessment scale (CRA), and open-ended questions. Carer burden was significant (p ≤ .01) in the 60 to 69 age group. The relationship between CRA and CES-D10 in carers in the 50 to 59, 60 to 69 carer age groups; and 0 to 29, 60 to 69, 70 to 79, and 80 plus care recipient age groups were also significant. Mean burden was highest in the 50 to 59 age group (77/120) with depression mean highest in the 30 to 39 age group (14/30). Carers commonly discussed the adverse effects of caregiving on identity, lifestyle, health, and financial situation. Lack of information, poor respite care, and combining work with care were major frustrations. If the government wishes to successfully pursue initiatives allowing people to remain at home, more resources are needed to adequately support carers.
Purpose – This paper describes an ongoing process of engagement with carers of people with intellectual disabilities currently being monitored by an out of area service for both carers of people placed both in area and out of area within a local Mental Health Learning Disabilities team in South London.
Design/methodology/approach – Using a series of consultation events, carers were asked to participate in a free dialogue which focussed on everyday issues for carers. This included financial implications of caring, knowledge of care pathways/systems in care, carer's needs and expectations and the support they currently receive.
Findings – This paper highlighted a number of issues and concerns that carers face in their daily lives when supporting one or more people. These include lack of recognition, financial difficulties, lack of training and support.
Originality/value – This project offered a valuable insight into current carer perceptions and will help develop further discussion and promote greater engagement by services and mutual understanding with this often neglected group.
Purpose: This meta-synthesis was conducted to explore qualitative spousal accounts of coping and adaptation to caregiving when their partner experienced a stroke. Method: Electronic databases were searched systematically and inclusion and exclusion criteria were applied. The meta-synthesis was conducted using guidance from Sandelowski and Barroso to extract salient data relating to coping and adaptation. Results: Twelve papers were identified for inclusion and seven themes resultant themes were extracted: Seeking information; Searching for own space and well-being; Suffering in silence; Putting one’s own needs aside; Adapting to a changed role; Social support and Hope and Optimism: instilling a positive focus. Conclusions: The findings suggested spouses adopt a range of adaptive coping strategies although several barriers to these were also identified and discussed in relation to a number of clinical implications. The limitations of this meta-synthesis were discussed, together with recommendations for future research.
Implications for Rehabilitation:
It is important to provide stroke-related information and training in practical care tasks, preferably before their partner is discharged home from hospital, in order to avoid leaving spouses feeling vulnerable and unprepared.
The positive adapting mechanisms identified within this review can be drawn on by clinicians to inform their interactions with stroke spousal carers and to advise them in strategies which have helped their counterparts.
The objective of this study was to describe patients' and informal carers' perceptions of care received and services offered following a diagnosis of primary lung cancer. We prepared a prospective, national, mail questionnaire survey of 466 patients with a diagnosis of primary lung cancer and a lay carer of their choice. The setting was 24 randomly chosen hospitals throughout the UK, from a range of urban (n = 11) and rural settings (n = 13). The majority (76%/159) of responders were recipients of care from cancer units. Two hundred and nine patients (45%) with primary lung cancer and 70 (15%) lay carers completed questionnaires. The main results that we found were that key areas of unmet need were most apparent during periods away from acute service sectors, with as few as 40% of patients reporting having received as much help as they needed from community services. The greatest onus of care for patients fell to lay carers, but only 29% of patients identified their lay carers as having needs in relation to their illness. Where patients received all their diagnostic tests in one hospital they were significantly more likely to wait less time between first seeing their general practitioner (GP) and being told their diagnosis (P = 0.0001) than patients who had to attend more than one hospital during their diagnostic work-up period. Fifty per cent of patients reported experiencing some degree of breathlessness even at rest, but only 15% reported having received any advice on living with it. Less than a quarter (23%) of hospital consultants identified anxiety as a key problem for patients with lung cancer, but 66% of patients identified it as such. Hospital staff largely overlook the needs of informal carers, who derive support from a small, mainly community oriented group of professionals, but accessing help is problematic and is dependent on local resources and a need to be proactive.
Our conclusions are that developments in service provision for patients with lung cancer and their informal carers need to focus on six key areas: development of strategies to encourage patients to present earlier to their GP; ongoing evaluation of rapid diagnostic clinics; development and evaluation of a lung cancer care coordinator role; evaluation of innovations in delivery of nursing care in the community; development of local guidelines to facilitate equitable access to palliative care and social services; and evaluation of supportive strategies targeted at lay carers.
Importance Caregiver burden may result from providing care for patients with chronic illness. It can occur in any of the 43.5 million individuals providing support to midlife and older adults. Caregiver burden is frequently overlooked by clinicians.
Objectives To outline the epidemiology of caregiver burden; to provide strategies to diagnose, assess, and intervene for caregiver burden in clinical practice; and to evaluate evidence on interventions intended to avert or mitigate caregiver burden and related caregiver distress.
Evidence Cohort studies examining the relation between demographic and social risk factors and adverse outcomes of caregiver burden were reviewed. Review of recent meta-analyses to summarize the effectiveness of caregiver burden interventions were identified by searching Ovid MEDLINE, AgeLine, and the Cochrane Library.
Results Risk factors for caregiver burden include female sex, low educational attainment, residence with the care recipient, higher number of hours spent caregiving, depression, social isolation, financial stress, and lack of choice in being a caregiver. Practical assessment strategies for caregiver burden exist to evaluate caregivers, their care recipients, and the care recipient’s overall caregiving needs. A variety of psychosocial and pharmacological interventions have shown mild to modest efficacy in mitigating caregiver burden and associated manifestations of caregiver distress in high-quality meta-analyses. Psychosocial interventions include support groups or psychoeducational interventions for caregivers of dementia patients (effect size, 0.09-0.23). Pharmacologic interventions include use of anticholinergics or antipsychotic medications for dementia or dementia-related behaviors in the care recipient (effect size, 0.18-0.27). Many studies showed improvements in caregiver burden–associated symptoms (eg, mood, coping, self-efficacy) even when caregiver burden itself was minimally improved.
Conclusions and Relevance Physicians have a responsibility to recognize caregiver burden. Caregiver assessment and intervention should be tailored to the individual circumstances and contexts in which caregiver burden occurs.
In May 2012, the Scottish Government launched a public consultation to inform recommendations for legislation to support the integration of adult health and social care in Scotland. This report presents the views expressed by respondents to the consultation proposals. Scottish Ministers’ proposals for integration of adult health and social care, as described in the consultation document, are based on four key principles: health and social care services should be firmly integrated around the needs of individuals, their carers and other family members; there should be strong and consistent clinical and care professional leadership in the planning and provision of services; the providers of services should be held to account jointly and effectively for delivering improved outcomes; and services should be underpinned by flexible, sustainable financial mechanisms that give priority to the needs of the people they serve, rather than the organisations through which they are delivered.
Background: Approximately one in ten of the UK population are unpaid carers supporting a family member or friend who could not manage without their help, saving the UK economy an estimated £87 billion. This role is known to sometimes have a negative impact on carers and to require support both informally and from statutory services. General practice is a first point of contact for carers but research investigating general practitioners' (GPs') attitudes towards carers and awareness of issues facing carers is rare. This study therefore aimed to identify GPs' attitudes, awareness of issues, and perceptions of the barriers and enablers to provision of services.
Methods: Using a self-completion questionnaire distributed at a series of workshops, this study investigates GPs' attitudes to carers; awareness and knowledge of carers' issues; services offered in general practice and barriers to supporting carers.
Results: Seventy eight out of a total of 95 GPs (82% response rate) from a variety of areas in England completed the questionnaires. The GPs identified time, resources and lack of knowledge as barriers, but only 9% agreed with the statement that there is little support they can offer carers. However, nine in ten GPs (89%) feel they have insufficient training here and approximately half of them (47%) lack confidence that they are meeting carers' needs. Confidence in identifying carers is also low (45%). Issues that GPs would look out for amongst carers include emotional and physical health problems and financial and isolation difficulties. GPs specifically highlighted educational and isolation issues for young carers. Few services were described that targeted carers.
Conclusions: GPs recognise that they have an important role to play in supporting carers but would like training and support. Further investigation is needed both to determine how best to train and facilitate GPs and general practice teams in their role in supporting carers and to identify what carers need and want from general practice. Identifying carers' leads or carers' champions amongst practice staff is possibly one way forward. Given the proposed greater commissioning role for primary care, greater understanding here is particularly important.
Background/objective: Because informal health care is now recognized to be indispensable to health care systems, different forms of respite care have been developed and publicly funded that supposedly alleviate caregivers’ perceived burdens and help prolong the care giving task. Nonetheless, the use of respite care services is low even among substantially strained caregivers. To throw light on this low usage, this paper explores the associations between attitudes towards respite care, characteristics of the care giving situation, and the need and use of respite care.
Method: The survey, administered to a sample of 273 informal caregivers, addressed caregiver, care recipient, and care giving situation characteristics, as well as the familiarity and use of respite care services. It also included a sub-set of 12 statements eliciting attitudes towards respite care from an earlier study [Van Exel NJA, De Graaf G, Brouwer WBF. Care for a break? An investigation of informal caregivers’ attitudes toward respite care using Q-methodology. Health Policy 2007;83(2/3):332–42]. Associations between variables were measured using univariate statistics and multinomial logistic regression.
Results: We found three caregiver attitudes, distributed fairly equally in the sample, that are apparently associated with caregiver educational level, employment status, health and happiness, as well as care recipient gender, duration and intensity of care giving, relationship, co-residence, need for surveillance, and subjective burden and process utility of care giving. However, the relation between attitude and familiarity with and use of respite care services is ambiguous.
Conclusions: Although further exploration is needed of the mix of Q-methodology and survey analysis, the overall results indicate that a considerable portion of the caregiver population needs but does not readily ask for support or respite care. This finding has important policy implications in the context of an ageing population.
Young people who develop dementia and their carers have all the distressing symptoms of older people who have this condition but with the added problems of having a career, financial commitments and often a young family. Explores the condition and the help that is available.
The literature suggests that the United Kingdom, in common with Europe, North America, Canada and Scandinavia, has seen significant growth in single-issue self-help/mutual aid groups concerned with health and social care issues since the 1970s, but there is only ad hoc academic and policy interest in such groups in the United Kingdom. This article presents findings from a doctoral study with two self-help/mutual aid groups for carers in South-East England. The data are drawn from semistructured interviews with 15 active members which explored reasons for joining, benefits derived from membership, and perceived differences between support gained by membership and their relationship with professionals. Most group members had prior experience of voluntary work/activity, which influenced their decision to join, often prompted by a failure of the ‘usual’ support network of family/friends to cope or adjust to the carer's needs. Members reported personal gains of empathy, emotional information, experiential knowledge and practical information, based on a core value of reciprocity through peer support. It is this latter benefit that sets apart membership of self-help groups from groups supported by professionals who may not appreciate the scope and breadth of carers’ responsibilities, or of the importance of their relationship with the person for whom they care. In this way, self-help groups offered additional, but not alternative, ‘space’ that enabled members to transcend their traditional role as a ‘carer’. It is concluded that self-help/mutual aid groups, based on reciprocal peer support, offer a valuable type of resource in the community that is not replicable in professional–client relations. The findings have contemporary relevance given the raft of new policies which value the experiential knowledge built by both individual and collectives of carers.
A society emerging from conflict, such as Northern Ireland, has an opportunity to tackle the full spectrum of discriminations affecting the society. The rights of citizens, the needs of carers and inequalities emerging from the history of conflict, are catered for. Access problems to health and social care services are still being experienced by hard to reach sections of our communities and health inequalities still persist. The strategy aims to change this consulting on disabled peoples’ access to health and social care services, and the development of better quality services.
General practitioners and district nurses have a long history of providing care outside the hospital setting. With health care increasingly moving out of the hospital setting, there are more opportunities for general practitioners and district nurses to work together to meet the health needs of the local population. However, the reduction in qualified specialist practitioner district nurses over the last decade is concerning. The need for an effective district nursing service has been recognised by the Department of Health in their own model – the nature of district nursing work, often over a long period, enables relationships to develop with the patient, family and informal carers as a basis for anticipatory care to manage long-term conditions. Communication and understanding of the role are central to enhance effective working between general practitioners and district nurses, which can be fostered by engagement in community-oriented integrated care and case management.
Objectives: Treatment of challenging behaviour in dementia using standardized psychopharmacological or psychosocial approaches remains problematical. A case-specific approach was trialled in this study, based on extensive evidence that each case is different in aetiology, the effects of the behaviour on others and what interventions are possible given the available resources.
Method: Forty-four consecutive referrals for challenging behaviour (two-thirds in residential care) were assessed across multiple causal domains. Both assessment and development of interventions were undertaken in collaboration with family carers and care staff. Measures of behaviour and associated carer distress, as well as medication and service use, were taken pre-intervention and at 2- and 5-month follow-ups.
Results: Psychotropic medication was used with a minority of participants but, overall, antipsychotic use was reduced. Psychosocial methods predominated, with 77% of cases judged as mainly or entirely psychosocial by an expert panel. There were significant mean improvements in behaviour and carer distress. Using conservative criteria there was a 65.9% clinical success rate.
Conclusion: Results confirm those of other studies which have used multifaceted interventions tailored to the unique needs of each case. They compare favourably with results from trials of standardized psycho-pharmacological or psychosocial approaches. More trials are needed, necessarily involving further development of robust methodologies which reflect the case-specific nature of challenging behaviour associated with dementia.
There are an estimated half a million people in the UK who provide unpaid care for a relative or friend with a life-limiting or terminal illness at any one time. Every year thousands of people take on a caring role, whereas others find that this role has ended. This guide has been developed by an expert working group, and provides a framework for developing a carers’ assessment process. It offers advice on how to identify carers and gives an overview of the assessment methods currently used by palliative care providers. The purpose of this document is to guide palliative care professionals in developing a process to identify carers’ needs that is relevant to their local context and provide, or refer/direct carers to, support services. This process is referred to as ‘carers’ assessment’ throughout the guide.
Unpaid carers of adults, as a group, have, until recently, been largely neglected by the EU. While a number of provisions of EU law – including anti-discrimination measures and protections for part time workers – may benefit (some) carers of adults in the workplace, the existing package of work–life balance regulation falls well short of a coherent approach to addressing the needs of this group. Growing concern about a crisis in social care across member states, linked to an ageing demographic, has recently focussed attention on inadequacies in the formal care sector; on the vital economic contribution of unpaid care; and on a projected rise in the need for care coupled with a decline in the availability of informal care as the population ages and family structures change. It has prompted interest both in the need to develop the formal care sector, with the opportunities this may present to create employment, and in the need to support ‘informal’ carers in the workplace. This paper explores the various policy drivers for EU regulation to support informal carers in the workplace and consider the potential difficulties in establishing a coherent legal response.
This resource aims to provide practitioners working with children and families affected by ill health and disability with information, resources and links to help develop and implement best policy and practice for services to identify and support black and minority ethnic young carers and their families.
This site was originally funded by the Department of Health in order to provide an understanding of the needs of black and minority ethnic family carers and best practice support.
We have been working together to take forward The National Carers’ Strategy, published in 2008 alongside the promotion of more personalised support and sustained independence. This paper is the fourth in a sequence of short reviews designed to stimulate debate and improve support for carers. It links closely to Commissioning for Carers [2009]. The focus of this paper is to help us all to tackle the following question: How will you, carers, and people more generally know if you have improved outcomes for people who give and receive care and support? It is a question not easily answered. This paper outlines an audit approach that we believe may help. It is a resource to be drawn upon alongside others; for example, those on the IDeA website. We also explore the potential of Outcomes Based Accountability models. We can also see some advantages in the use of model carer feedback resource materials, as a way of improving the systematic collection of information on outcomes. The paper points to the importance of Total Place and the need to link what we do to Joint Strategic Needs Assessments4 and wider partnership working. We have also made links to the current performance assessment framework in the Care Quality Commission’s Commissioner Assessment Guide5 . This framework will be changing from next year and we hope this paper will be seen as a contribution to its development.
BACKGROUND: There is a growing population of older patients with End Stage Renal Disease (ESRD) managed without dialysis in Thailand, and services have yet to be developed to specifically respond to the needs of this group. As a consequence this population are likely to have unmet needs with respect to health care and suffer from symptoms that could be better managed.
OBJECTIVE: This qualitative study explored experiences and health care needs during the last year of life among older people with ESRD, managed without dialysis, from the perspective of bereaved carers.
METHODS: A retrospective post-bereavement approach was adopted to collect qualitative interview data. Purposive sampling was used to select 12 bereaved relatives of older patients with ESRD, managed without dialysis, who had died in the previous 5-10 months. Semi-structured interviews were conducted. Data were digitally recorded, transcribed and analysed through framework analysis.
RESULTS: Four main themes were identified: symptom experiences, impacts of being managed without dialysis, symptom management, and health care needs and utilisation of services.
CONCLUSIONS: Findings confirmed patients' needs were not being met and identified the need to develop approaches to symptom management at home, health education, and psychological and spiritual support at the end of life.
Evidence from a variety of sources suggests that there has been an increase of around 1% per annum in the prevalence of learning disability (LD) in adults over the last 35 years, due mainly to increases in survival. This trend is likely to continue for at least another ten years. Ninety‐six percent of adults notified to the Leicestershire LD register have an estimated IQ below 50 or need supervision every day to remain safe. Three‐quarters have additional significant disabilities including behaviour problems, psychological symptoms, physical dependencies or epilepsy. In one quarter the behaviour problem poses a major challenge to the achievement of an ordinary life. Two‐thirds indicate a need for help from one or other specialist. Informal carers are actively providing care for nearly half the adults, but a quarter are not content with care‐giving. Carers Report 40% more limiting health problems than their counterparts in the general population, in particular depression in women and cardiovascular problems in men. The specific areas of unmet need among carers Reporting depression are for financial help, long‐term social support and medical advice. Resource allocation for this client group needs to be reviewed in the light of substantial and unrecognised increases in prevalence which are continuing to occur, and the need for long‐term support.
INTRODUCTORY NOTE
My wife, Pauline, died from Alzheimer’s disease at the age of 59. She was 51 when diagnosed after several years of problems. I cared for her at home. For the first 3 years, I maintained my employment, albeit on an increasingly part-time basis, but resigned from work and cared for her full-time for 5 years when her needs demanded round-the-clock attention. She remained in her own home to within 5 weeks of her death, when fracturing my leg put paid to my direct caring role.
The article was originally written along with two or three others as a result of a commission from Suffolk Carers for their magazine. This was some time before Pauline’s death. In ‘Sharing’, I tried to encapsulate the story of our marriage and the effect that Alzheimer’s disease had had on that relationship. However, the writing took over from the concept and it became too much of a personal statement about us for me to be happy about it being read by others while Pauline was still alive but unable to contribute, so I didn’t offer it for publication but filed it away. I think the writing was, in any case, a sort of much-needed therapy for me at that time.
Philip Ingram July 2003
Background: Lower socioeconomic populations live and die in contexts that render them vulnerable to poorer health and wellbeing. Contexts of care at the end of life are overwhelmingly determined by the capacity and nature of formal and informal networks and relations to support care. To date, studies exploring the nature of networks and relations of support in lower socioeconomic populations at the end of life are absent. This qualitative study sought to identify the nature of individual, community and civic networks and relations that defined the contexts of care for this group.
Methods: Semi-structured qualitative interviews were conducted with 16 patients and 6 informal carers who identified that they had social and economic needs and were from a lower socioeconomic area. A social capital questionnaire identifying individual, community and civic networks and relations formed the interview guide. Interviews were audio-taped, transcribed and analysed using framework analysis.
Results: Participants identified that individual and community networks and relations of support were mainly inadequate to meet care needs. Specifically, data revealed: (1) individual (informal caregivers) networks and relations were small and fragile due to the nature of conflict and crisis; (2) community trust and engagement was limited and shifted by illness and caregiving; (3) and formal care services were inconsistent and provided limited practical support. Some transitions in community relations for support were noted. Levels of civic and government engagement and support were overall positive and enabled access to welfare resources.
Conclusion: Networks and relations of support are essential for ensuring quality end of life care is achieved. Lower socioeconomic groups are at a distinct disadvantage where these networks and relations are limited, as they lack the resources necessary to augment these gaps. Understanding of the nature of assets and limitations, in networks and relations of support, is necessary to inform interventions to improve end of life care for lower socioeconomic populations.
Act outlining the reform of social services law in Wales which became law on 1 May 2014. Key aspects include making about improving the well-being outcomes for people who need care and support and carers who need support; to make provision about co-operation and partnership by public authorities with a view to improving the well-being of people; to make provision about complaints relating to social care and palliative care; and for connected purposes. Sections of the Act cover: needs assessment; charging and financial assessment; looked after and accommodated children; safeguarding; social services functions; co-operation and partnership; complaints representations and advocacy services.
Background. Despite 30 years of research attention, discharge planning and district nurse (DN) referral remain problematic and few cancer-related publications exist. With shorter hospitalizations, discharged cancer patients and their carers may experience unmet needs for assessment, information and support. Although DN referral might enable patient/carer needs to be met, the DN role lacks clarity.
Aim. To investigate the needs of people with cancer, and their lay carers during discharge from hospital to home, and identify the role of DNs in meeting these needs.
Method. In this qualitative study, 71 pre- and postdischarge interviews were performed with cancer patients and (where possible) their carers. Predischarge interviews focused on expectations and postdischarge interviews on experiences of discharge and aftercare. Interview tapes were transcribed and analysed thematically.
Results. Interviewees anticipated few aftercare needs during predischarge interviews but described met and unmet needs during postdischarge interviews. Unmet needs of those referred and not referred to the district nursing service were similar. Patients and carers had unmet needs for psychological support related to nutrition. Carers, especially those not resident with and not related to patients, had informational needs. Even very elderly, ill and isolated patients felt that other people had greater needs than their own and many thought that DNs only performed physical tasks.
Conclusion. All cancer patients discharged from hospital might be referred to a DN for ongoing assessment of needs. However, to ensure optimal results, the DN role needs to be clarified and public perceptions altered. Further research on psychological aspects of nutrition and the needs of carers not resident with/not related to patients is necessary.
People with multiple sclerosis depend heavily upon their families and other informal carers as they receive limited support from health-care professionals or health-care services, Adopting the carer role results in a life-changing experience, which may bring rewards and challenges to the carer. This paper reviews the research addressing the experiences of carers of people with multiple sclerosis published between 2002 and 2007 building upon an earlier review. The literature suggests that carers have needs across various domains and that spouses/partners have particular needs. Much of the evidence has limited generalizibility although the geographical spread of the evidence indicates considerable consistency of need. The review describes ongoing carer needs which require supportive care and provides the basis for the development and testing of carer interventions for use by health-care, professionals.
Aim. This paper is a report of a study of the perceptions of family caregivers regarding the availability and adequacy of health and social care services for their family member with Huntington disease, and to compare findings from these reports in United Kingdom and United States of America samples.
Background. Huntington disease is an inherited neurodegenerative condition. Family members often take responsibility for care of relatives with long-term conditions. Studies have demonstrated there are both positive and negative outcomes for carers.
Methods. During 2006 and 2007, respondents from the United Kingdom (n = 108) and the United States (n = 119) who were caring for a relative affected with Huntington disease completed the Community Health Care Services Scale to identify areas of concern and the extent to which specific issues bothered carers. Data were analysed using statistical tests including chi-square, t-tests and factor analysis. Results were compared between carers in the two cohorts.
Results. Three main factors were derived: ‘community resources’, ‘individualized care’ and ‘knowledge of Huntington disease’. Carers had concerns about the knowledge of healthcare professionals providing care and thought that there were insufficient services to support them and the affected person. There were different challenges for carers when the affected person had a long-term neurodegenerative condition because these carers were also likely to have responsibilities for earning and caring for children.
Conclusion. Comprehensive facilities and resources are needed to support families affected by long-term complex conditions. Healthcare professionals need to be aware of the health needs of carers as well as those of the affected person.
Background: Informal carers of people with dementia can suffer from depressive symptoms, emotional distress and other physiological, social and financial consequences.
Objectives: This review focuses on three main objectives: To: 1) produce a quantitative review of the efficacy of telephone counselling for informal carers of people with dementia; 2) synthesize qualitative studies to explore carers’ experiences of receiving telephone counselling and counsellors’ experiences of conducting telephone counselling; and 3) integrate 1) and 2) to identify aspects of the intervention that are valued and work well, and those interventional components that should be improved or redesigned.
Search methods: The Cochrane Dementia and Cognitive Improvement Group's Specialized Register, The Cochrane Library, MEDLINE, MEDLINE in Process, EMBASE, CINAHL, PSYNDEX, PsycINFO, Web of Science, DIMDI databases, Springer database, Science direct and trial registers were searched on 3 May 2011 and updated on 25 February 2013. A Forward Citation search was conducted for included studies in Web of Science and Google Scholar. We used the Related Articles service of PubMed for included studies, contacted experts and hand-searched abstracts of five congresses.
Selection criteria: Randomised controlled trials (RCTs) or cross-over trials that compared telephone counselling for informal carers of people with dementia against no treatment, usual care or friendly calls for chatting were included evaluation of efficacy. Qualitative studies with qualitative methods of data collection and analysis were also included to address experiences with telephone counselling.
Data collection and analysis: Two authors independently screened articles for inclusion criteria, extracted data and assessed the quantitative trials with the Cochrane 'Risk of bias' tool and the qualitative studies with the Critical Appraisal Skills Program (CASP) tool. The authors conducted meta-analyses, but reported some results in narrative form due to clinical heterogeneity. The authors synthesised the qualitative data and integrated quantitative RCT data with the qualitative data.
Main results: Nine RCTs and two qualitative studies were included. Six studies investigated telephone counselling without additional intervention, one study combined telephone counselling with video sessions, and two studies combined it with video sessions and a workbook. All quantitative studies had a high risk of bias in terms of blinding of participants and outcome assessment. Most studies provided no information about random sequence generation and allocation concealment. The quality of the qualitative studies ('thin descriptions') was assessed as moderate. Meta-analyses indicated a reduction of depressive symptoms for telephone counselling without additional intervention (three trials, 163 participants: standardised mean different (SMD) 0.32, 95% confidence interval (CI) 0.01 to 0.63, P value 0.04; moderate quality evidence). The estimated effects on other outcomes (burden, distress, anxiety, quality of life, self-efficacy, satisfaction and social support) were uncertain and differences could not be excluded (burden: four trials, 165 participants: SMD 0.45, 95% CI -0.01 to 0.90, P value 0.05; moderate quality evidence; support: two trials, 67 participants: SMD 0.25, 95% CI -0.24 to 0.73, P value 0.32; low quality evidence). None of the quantitative studies included reported adverse effects or harm due to telephone counselling. Three analytical themes (barriers and facilitators for successful implementation of telephone counselling, counsellor's emotional attitude and content of telephone counselling) and 16 descriptive themes that present the carers’ needs for telephone counselling were identified in the thematic synthesis. Integration of quantitative and qualitative data shows potential for improvement. For example, no RCT reported that the counsellor provided 24-hour availability or that there was debriefing of the counsellor. Also, the qualitative studies covered a limited range of ways of performing telephone counselling.
Authors' conclusions: There is evidence that telephone counselling can reduce depressive symptoms for carers of people with dementia and that telephone counselling meets important needs of the carer. This result needs to be confirmed in future studies that evaluate efficacy through robust RCTs and the experience aspect through qualitative studies with rich data.
This is the report of the third national survey of young carers who are being supported by specialist young carers projects across the UK. Throughout the report, where appropriate and for comparison, we refer to the two previous surveys conducted in 1995 and 1997 (Dearden and Becker, 1995, 1998). The 2004 Report is based on data collected from 87 projects concerning a total of 6,178 young carers – the largest survey of its kind.
Growing numbers of older people need help with financial matters, and relatives and friends are likely to be the first involved. At the same time, older people's financial resources are increasingly complex. In some families, differences in expectations or conflicts of interest among different members may bring further complications. A scoping study found a lack of systematic information on the role of carers in helping older people manage money and assets. Other findings from the scoping study indicate both the growing importance and the complexity of asset management in later life; the information needs of older people and their relatives and friends; and the need for further research into these issues to inform the development of policy and practice.
This paper analyzes the impact of informal care by adult children on the use of long-term care among the elderly in Europe and the effect of the level of the parent’s disability on this relationship. We focus on two types of formal home care that are the most likely to interact with informal care: paid domestic help and nursing care. Using recent European data emerging from the Survey on Health, Ageing and Retirement in Europe (SHARE), we build a two-part utilization model analyzing both the decision to use each type of formal care or not and the amount of formal care received by the elderly. Instrumental variables estimations are used to control for the potential endogeneity existing between formal and informal care. We find endogeneity of informal care in the decision to receive paid domestic help. Estimation results indicate that informal care substitutes for this type of formal home care. However, we find that this substitution effect tends to disappear as the level of disability of the elderly person increases. Finally, informal care is a weak complement to nursing care, independently of the level of disability. These results highlight the heterogeneous effects of informal care on formal care use and suggest that informal care is an effective substitute for long-term care as long as the needs of the elderly are low and require unskilled type of care. Any policy encouraging informal care to decrease long-term care expenditures should take it into account to assess its effectiveness.
Objectives To understand the perspectives of people with severe chronic obstructive pulmonary disease (COPD) as their illness progresses, and of their informal and professional carers, to inform provision of care for people living and dying with COPD.
Design Up to four serial qualitative interviews were conducted with each patient and nominated carer over 18 months. Interviews were transcribed and analysed both thematically and as narratives.
Participants 21 patients, and 13 informal carers (a family member, friend, or neighbour) and 18 professional carers (a key health or social care professional) nominated by the patients.
Setting Primary and secondary care in Lothian, Tayside, and Forth Valley, Scotland, during 2007-9.
Results Eleven patients died during the study period. Our final dataset comprised 92 interviews (23 conducted with patient and informal carer together). Severe symptoms that caused major disruption to normal life were described, often in terms implying acceptance of the situation as a “way of life” rather than an “illness.” Patients and their informal carers adapted to and accepted the debilitating symptoms of a lifelong condition. Professional carers' familiarity with the patients' condition, typically over many years, and prognostic uncertainty contributed to the difficulty of recognising and actively managing end stage disease. Overall, patients told a “chaos narrative” of their illness that was indistinguishable from their life story, with no clear beginning and an unanticipated end described in terms comparable with attitudes to death in a normal elderly population.
Conclusions Our findings challenge current assumptions underpinning provision of end of life care for people with COPD. The policy focus on identifying a time point for transition to palliative care has little resonance for people with COPD or their clinicians and is counter productive if it distracts from early phased introduction of supportive care. Careful assessment of possible supportive and palliative care needs should be triggered at key disease milestones along a lifetime journey with COPD, in particular after hospital admission for an exacerbation.
This code of practice provides guidance to mental health professionals and other practitioners on how they should carry out their duties under the Mental Health Act. As well as providing guidance for professionals, the revised code of practice also guides patients, their families and carers on their rights. Chapters are grouped into seven areas: Using the Act; Protecting patient's rights and autonomy; Assessment, transport and admission to hospital; Additional considerations for the needs of specific patients; Care, support and treatment in hospital; Leaving hospital; and additional information for professional with specific responsibilities under the Act. Subjects covered in individual chapters include: the nearest relative; independent mental health advocates; mental capacity and deprivation of liberty; detention in hospital; police community treatment orders; guardianship; after care; and care programme approach. The code of practice will come into force on 1 April 2015, depending on Parliamentary approval.
This paper presents the findings from a project investigating the circumstances, experiences, perspectives and service needs of young people caring for a family member with a disability or long-term illness. Using qualitative methods, our research explored the experiences of two cohorts of young carers – younger carers aged 7 to 17 years and young adult carers aged 18 to 25 years. The concept of ‘bounded agency’ offers an explanation for the way that younger carers' and young adult carers' decisions and aspirations can be shaped by the barriers and contexts in which they find themselves. The study compares the impacts of caring on the participants' education, employment, health and social life. Important differences are identified, particularly relating to young adult carers' future aspirations as they approach key normative transitions into young adulthood. The paper concludes with implications for services and policy for young carers. [ABSTRACT FROM AUTHOR];Copyright of Journal of Youth Studies
This report presents an analysis of data collected from the General Household Survey (GHS) from April 2001 to March 2002 relating to people aged 65 and over. The General Household Survey (GHS) is a multi-purpose continuous survey carried out by the National Statistics, which collects information on a range of topics from people living in private households in Great Britain. The GHS provides a rich source of information about people aged 65 and over.
Information was collected from people living in private households and therefore excludes those in communal establishments such as residential or nursing homes which only counts for 4% of people aged 65 and over. The survey asked people aged 65+ about their living circumstances, their health, their ability to perform a range of domestic and other tasks, and the use they make of health and social services. The information collected has enabled the GHS to present regular snapshots of older people's lives and to examine how these have changed over the years.
Drawing on an interview-based case study of young people caring for dependent adult members of their households in Harare, this paper connects the experiences of young carers in Zimbabwe to global forces—namely the HIV/AIDS pandemic and economic liberalisation. It is argued, firstly, that care-giving by young people is a largely hidden and unappreciated aspect of national economies which is growing as an outcome of conservative macroeconomic policies and the HIV/AIDS explosion. Secondly, that young people have a right to recognition of their work as work. Thirdly, while acknowledging that conceptualising childhood is problematic, there needs to be less emphasis on northern myths of childhood as a time of play and innocence and more attention on defending children's rights to work as well as to be supported in their work under appropriate circumstances. The articulation between global processes and the localised experiences of individual children as providers of care within the home contributes to efforts to re-introduce social reproduction as an important (but often missing) aspect of debates around globalisation. In addition, this article adds to the growing literature on the geographies of childhood while tackling the imbalance within that literature, whereby working young people and those of the global South are relatively neglected. Suggestions are offered in the conclusions for policy recommendations to recognise and support young carers in Africa, while calling for further research.
Background. Cystic fibrosis (CF) is the most common autosomal recessive genetic disease in Caucasian people, traditionally conceptualized as a condition whereby sufferers died in childhood. However, the current median survival age of 30 and a predicted median survival age of 40 for those born with the disease over the last decade ensure that families members will assist hospital staff with treatment and care well into most patients' adulthood.
Aims. This study explores the perceptions and experiences of lay care-giving amongst parents and partners of adults with CF who were being treated at a specialist CF centre in England.
Methods. Thirty-one relatives of adults with CF were interviewed in their own homes using an interview topic guide. All interviews were audiotape recorded and transcribed verbatim. Analysis of data was assisted by ATLAS-ti, a software package for qualitative research.
Findings. Two main themes surrounding lay carers' role in treatment and care were identified. Firstly, the notion of lay carers giving ‘expert’ care, both in hospital and at home was recognized. Parents' expertise was greater than that of partners until the patient required intensive hospital interventions, when partner expertise increased. Secondly, the degree of lay carers' felt inclusion in the hospital consultation appeared to depend on the nature of their relationship with the patient and the patients' health state.
Conclusion. Lay carers are routinely performing tasks for adults with CF that were once the remit of trained nurses. Families need higher levels of nursing and social support when certain treatments are used at home. Attention needs to be directed to how lay carers of adult patients can be included in hospital consultations.
1. This document is a summary of the responses received during the consultation on revised statutory guidance to implement the Strategy for Adults with Autism in England. It highlights the key themes and common issues from the consultation responses and sets out the Government’s response that has shaped the statutory guidance. 2 Autism is a lifelong condition that influences how people interpret the world and interact with others. It is estimated that more than 500,000 people in England are on the autism spectrum, which includes people with high functioning autism and Asperger Syndrome. Autism is something that people and their families live with permanently so gaining the right support at the right time can make a significant difference to people’s lives. 3. The statutory guidance updates the original guidance, taking into account progress made since 2010 and changes in line with recent legislation such as the Care Act 2014 and the Children and Families Act 2014
Background: Demographic and socioeconomic changes have increased policy interest in informal carers. However, despite the multicultural nature of British society, most research in this field has been in majority communities. Aim: To explore the role of the primary health care team (PHCT) in supporting carers from British South Asian communities. Design of study: Qualitative study. Setting: Four South Asian communities in Leicestershire and West Yorkshire. Method: Focus groups and in-depth interviews were used to assess male and female carers, supported by a literature review. Results: Failure to recognise carers’ needs, gaps in service provision, and communication and language issues compromised carers’ ability to care. While some carers were positive about the PHCT role, the main weaknesses concerned poor consultation, PHCT attitudes towards carers, and access to appropriate services. Conclusion: South Asian carers’ experiences largely parallel those of others, but there are some issues that are distinct, namely, language and communication barriers, culturally inappropriate services, and implicit or explicit racism. The multi-ethnic nature of Great Britain requires that professional practice enhances the ability of minority ethnic communities to provide informal care. The findings underline the important role of the PHCT in ensuring that carers’ needs are taken seriously and that appropriate services reach them. Keywords: ethnic groups; cultural diversity; carers; primary health care team.
The aim of the present study was to explore the experiences of recipients and providers of community care in rural areas in Northern Ireland. Additionally, the authors sought to examine the impact of location, housing and environmental factors on the delivery of community care to older people with complex needs. Individual, semistructured interviews were held with service users (n = 17) and family carers (n = 14). Individual and focus group interviews were conducted with care assistants, health and social care professionals, and senior managers from a large health and social care trust and health and social services board in Northern Ireland. The importance of enabling older people to remain in their own homes and communities was emphasised by all participants. The main challenges associated with care provision in rural areas included: difficulties recruiting care assistants; lack of choice of care assistants; isolation; travel and distance between clients and their care assistants; and poor housing conditions. There was a general consensus among participants that the effectiveness of rural community care was perceived to be reliant upon the goodwill of the community. Additionally, changing demographic trends and the predicted shortfall in the number of formal and informal carers were considered key issues for service planners. A number of creative strategies could be used to address many of the limitations associated with rural isolation. These should involve capitalising on available community networks. However, planners should also acknowledge that additional resources are required to maintain older people in rural communities.
The huge role of unpaid family carers is outlined in this essay, together with examples of good practices by NHS organisations to support their needs. The authors point out that with declining NHS resources there will be even more reliance on family carers.
AIM:This paper describes a cost analysis of a home-based support service for frail older people and their family carers in two municipalities in West Sweden and using information and communication technology.
BACKGROUND: A key challenge facing nurse managers across Europe is an increasingly aged population, combined with reduced numbers of young adults of working age. New solutions are needed to provide quality, cost-effective community care services to frail older people and their family carers.
METHODS: A case study methodology involving five families was used, and included a detailed cost description of the technology-based service compared with usual services. Cost data were collected in June 2002. This work formed part of a larger project exploring the impact of a technology-based service known as, Assisting Carers using Telematics Interventions to meet Older Persons' Needs (ACTION). In addition to cost data, information was gathered on the quality of life of frail older people and their family carers, and the job satisfaction and work methods of nurses and other practitioners based in the community. The cost analysis comprised a description of the family and their caring situation, the perceived benefits of the telematic based support service and an assessment of its impact on the use of other care services. These analyses were carried out with the help of needs assessors who were known to the families, and nurses working in the ACTION call centre. All results were validated by the five participating families.
RESULTS: Cost savings were achieved in all cases, and the benefits to older people and their carers were also considerable. As a result of the cost analysis and overall evaluation data, ACTION has been implemented as a mainstream service in the municipalities involved.
CONCLUSION: Researchers, nurses, other practitioners and community care managers can work together with frail older people and their family carers to develop quality, cost-effective support services that reduce demands on staff whilst providing benefits to users.
This study examines whether caregivers' differential utilization of respite and counseling support services is associated with different situational stress processes. A multinomial regression analysis was conducted to compare respite users, counseling users, and those who used neither service, using data collected on a statewide random sample of 1,643 California caregivers providing assistance to individuals aged 50 or older. Compared with caregivers who used neither service, respite service users were more likely to have demanding care situations giving rise to physical symptoms of stress, and were more likely to use community services for the care recipient to augment their care. In contrast, counseling service users were more likely to be managing the meaning of their care situation by seeking out information about services and talking with a confidant about their situation, while coping with both emotional and physical symptoms of stress. Tailoring caregiver interventions to meet the support needs and coping strategies stemming from diverse caregiving situations and caregiver characteristics may increase the likelihood that those interventions will be effective in alleviating or preventing deleterious secondary stress frequently experienced by family caregivers.
This paper reports on data from the Regional Study of Care for the Dying, conducted in 1990, and compares symptoms, care and service utilization for patients with chronic lung diseases (CLD) and lung cancer (LC) in the final 12 months of life. Post-bereavement structured interviews were conducted with informal carers of 449 LC patients and 87 CLD patients. The LC patients were significantly younger than those with CLD (P = 0.001) and these respondents were more likely to have been a spouse (P = 0.034). No differences were found in the mean number of symptoms reported by the two groups in the final year or week of life, although the CLD patients were more likely to have experienced these symptoms for longer. Significantly more patients with CLD than LC experienced breathlessness in the final year (94% CLD vs 78% LC, P < 0.001) and final week (91% CLD vs 69% LC, P < 0.001) of life. Significantly more LC patients were reported to have experienced anorexia (76% LC vs 67% CLD, P = 0.06) and constipation (59% LC vs 44% CLD, p = 0.01) in the final year of life. There were no differences in general practitioner use, but LC patients were reported to have received more help from district nurses (52% LC vs 39% CLD, P = 0.025) and from a palliative care nurse (29% LC vs 0% CLD, P < 0.001). More CLD patients were reported to have received help from social services (29% CLD vs 18% LC, P = 0.037). LC patients were reported to be more likely to have known they might die (76% LC vs 62% CLD, P = 0.003) and to have been told this by a hospital doctor (30% LC vs 8% CLD, P = 0.001). Among those that knew, LC patients were told earlier prior to death than CLD patients. This study suggests that patients with CLD at the end of life have physical and psychosocial needs at least as severe as patients with lung cancer.
Report of evaluation of the Scottish Recovery Indicator (SRI) pilot in five health board areas of Scotland. SRI is a practice development tool for assessing whether mental health services are meeting service-users' needs for equality, social inclusion and recovery.
Original document from the Scottish Government website.
Comments are invited on the National Minimum Standards for Assessment. This compendium sets out the national minimum information standards for all adults, covering Assessment, Shared Care and Support Plans and Review. It also includes national minimum information standards for the identification of needs and support for Carers (‘Carers Assessment’). It builds on and supersedes the National Minimum Information Standards for Single Shared Assessment issued in August 2006 (CCD3/2006). There are two distinct types of standards used throughout the document: information standards which describe the subject matter that must be included without specifying exactly how it should be done or recorded, and data standards which specify the content at a more prescriptive level and include details on format and codes to be used for each of these standards.
Our unique study explores how carers are often inadequately considered during personalisation processes for service users, particularly, older people and those with learning disabilities.
The Department of Health’s A Better Future: consultation on a future strategy for adults with autistic spectrum conditions has attracted responses from a wide range of people and institutions, including people with an autistic spectrum condition (ASC), their families and carers, professionals involved with people with an ASC, and campaigning organisations. Respondents express frustration at the way people with an ASC are so little understood not only by the public at large, but often by the professionals who determine the care they receive. Particular problems expressed within the responses include the difficulty for adults in getting an ASC diagnosis. A national standard for such diagnoses, recognised by bodies other than the National Health Service, is recommended. Health professionals need to be aware of the other health problems, both physical and mental, to which an ASC can lead and that such problems can mask the underlying existence of an ASC.
Background: In recent years, there has been a gradual shift towards the study of individual symptom presentations in psychosis, this is particularly found in studies of delusional beliefs. However, the literature remains sparse on informal caregiver experiences of individual symptoms.
Aim: The study sought to investigate carer experiences of supporting a relative with delusional beliefs, which involve family members.
Methods: Semi-structured interviews were undertaken with five caregivers and subject to interpretative phenomenological analysis.
Results: Interviews yielded six superordinate themes highlighting issues concerning a carer's exposure to symptoms of illness; lack of understanding about their relatives' delusional beliefs; concerns over coming to harm from their relative: efforts made by the carer to conceal their relative's delusional beliefs and their consequences; fractured relationships, and a long process of learning how to best cope.
Conclusion: Caring for a relative with psychosis who experiences delusional beliefs about the carer and family members can be challenging. The results underscore the importance of providing a programme of support to meet the varied needs of informal carers with an explicit aim of assisting carers in their day-to-day problem solving. It should also help to address issues carers may have about causality, including beliefs about self-blame, and identifying effective coping strategies.
Family carers play an important role supporting individuals with intellectual and developmental disabilities (I/DD) into adulthood. Funders of services often desire this ongoing involvement by family members yet they rarely collect data about family carers. As policy makers and planners are increasingly recognizing the need for information related to indicators of system performance, a scoping review was conducted to identify system-wide information needed about family carers of adults with I/DD that would help improve the quality of service provided. A final review of 87 research articles was organized in terms of service use, service need, and permanency planning by family carers of adults with I/DD. Service use and need were associated with the presence of challenging behaviors among individuals with I/DD as well as carer demographics and health status. In addition, carers' subjective view of how well they think they can provide for their child in the future was an important determining factor of service need. Permanency planning was associated with child level of functioning as well as parent income, social support, and compound caregiving demands. Studies highlighted the importance of measuring family carers' mental and physical health and their perceptions of the adequacy of services received. Considered also were methodological limitations, highlighting considerations for future system monitoring. Methodological limitations of studies reviewed include reliance on cross-sectional data, samples consisting of families already receiving at least some services, and little information about the process of seeking and obtaining services. Areas to target in future system monitoring include information on who needs services, what services are needed, families' perceptions of the caregiving experience and families' experiences waiting for services over time. Understanding the experiences of family carers as seekers of formal services can help inform policy and practice.
In this article the author discusses the learning and support needs of older women who, because they cared for elderly relatives, found it difficult to attend classes. She contends that there exists a gap in awareness and equal opportunities provision. In an in-depth investigation of the Government's new Access to Learning Fund (ALF) in relation to part-time students, the author found some considerable discrepancies. While carers in general receive less favourable treatment than disabled learners, the focus is firmly on those with childcare responsibilities, while grannycarers have a very low profile. Even more crucially, Faculty of Continuing Education (FCE) students at Birkbeck College are very unlikely to be following the minimum 60 credit course, which would render them eligible to apply for the ALF in the first place! These findings led the author to turn to the hidden grannycarers themselves, asking them exactly how they wished this glaring gap in their educational provision to be filled. This article presents the results of the author's research which aims to ascertain how Birkbeck, and also the Government, can support carers.
Background: Since its launch in 2003, the Dutch Lung Cancer Information Center’s (DLIC) website has become increasingly popular. The most popular page of the website is the section “Ask the Physician”, where visitors can ask an online lung specialist questions anonymously and receive an answer quickly. Most questions were not only asked by lung cancer patients but also by their informal caregivers. Most questions concerned specific information about lung cancer.
Objective: Our goal was to explore the reasons why lung cancer patients and caregivers search the Internet for information and ask online lung specialists questions on the DLIC’s interactive page, “Ask the Physician”, rather than consulting with their own specialist.
Methods: This research consisted of a qualitative study with semistructured telephone interviews about medical information-seeking behavior (eg, information needs, reasons for querying online specialists). The sample comprised 5 lung cancer patients and 20 caregivers who posed a question on the interactive page of the DLIC website.
Results: Respondents used the Internet and the DLIC website to look for lung cancer–related information (general/specific to their personal situation) and to cope with cancer. They tried to achieve a better understanding of the information given by their own specialist and wanted to be prepared for the treatment trajectory and disease course. This mode of information supply helped them cope and gave them emotional support. The interactive webpage was also used as a second opinion. The absence of face-to-face contact made respondents feel freer to ask for any kind of information. By being able to pose a question instantly and receiving a relatively quick reply from the online specialist to urgent questions, respondents felt an easing of their anxiety as they did not have to wait until the next consultation with their own specialist.
Conclusions: The DLIC website with its interactive page is a valuable complementary mode of information supply and supportive care for lung cancer patients and caregivers.
Objective: This qualitative study was imbedded in a randomized controlled trial evaluating the addition of geriatricians to usual care to enable the comprehensive geriatric assessment process with older patients on acute medical units. The qualitative study explored the perspectives of intervention participants on their care and treatment.
Design: A constructivist study incorporating semi-structured interviews that were conducted in patients’ homes within six weeks of discharge from the acute medical unit. These interviews were recorded, transcribed, and analysed using thematic analysis.
Setting: An acute medical unit in the United Kingdom.
Participants: Older patients (n = 18) and their informal carers (n = 6) discharged directly home from an acute medical unit, who had been in the intervention group of the randomized controlled trial
Results: Three core themes were constructed: (1) perceived lack of treatment on the acute medical unit; (2) nebulous grasp of the role of the geriatrician; and (3) on-going health and activities of daily living needs postdischarge. These needs impacted upon the informal carers, who either took over, or helped the patients to complete their activities of daily living. Despite the help received with activities of daily living, a lot of the patients voiced a desire to complete these activities themselves.
Conclusions: The participants perceived they were just monitored and observed on the acute medical unit, rather than receiving active treatment, and spoke of on-going unresolved health and activity of daily living needs following discharge, despite receiving the additional intervention of a geriatrician.
How do carer support programmes meet the needs of those caring for dependent mentally ill older people? Julie Hall reviews the evidence.
As more people with a serious mental illness such as schizophrenia live in the community, often with their own families, carers need increasing support. Reports on a small research study which found a link between carers' knowledge of the condition and their ability to manage problems, and between their sense of satisfaction with services and their communications with the mental health team.
Background: End of life (EoL) care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL care is ethical and culturally appropriate. This article aims to synthesize qualitative research on EoL care in sub-Saharan Africa to inform policy, practice and further research. It seeks to identify areas of existing research; describe findings specifically relevant to the African context; and, identify areas lacking evidence.
Methods: Relevant literature was identified through eight electronic databases: AMED, British Nursing Index & Archive, CINAHL, EMBASE, IBSS, MEDLINE, PsycINFO, and the Social Sciences Citation Index; and hand searches. Inclusion criteria were: published qualitative or mixed-method studies in sub-Saharan Africa, about EoL care. Study quality was assessed using a standard grading scale. Relevant data including findings and practice recommendations were extracted and compared in tabular format.
Results: Of the 407 articles initially identified, 51 were included in the qualitative synthesis. Nineteen came from South Africa and the majority (38) focused on HIV/AIDS. Nine dealt with multiple or unspecified conditions and four were about cancer. Study respondents included health professionals, informal carers, patients, community members and bereaved relatives. Informal carers were typically women, the elderly and children, providing total care in the home, and lacking support from professionals or the extended family. Twenty studies focused on home-based care, describing how programmes function in practice and what is needed to make them effective. Patients and carers were reported to prefer institutional care but this needs to be understood in context. Studies focusing on culture discussed good and bad death, culture-specific approaches to symptoms and illness, and the bereavement process.
Conclusions: The data support or complement the findings from quantitative research. The review prompts a reconsideration of the assumption that in Africa the extended family care for the sick, and that people prefer home-based care. The review identifies areas relevant for a research agenda on socio-cultural issues at the EoL in sub-Saharan Africa.
A measure which outlines the ability of the National Assembly for Wales to leglislate to introduce a new requirement on the NHS and local authorities in Wales to prepare, publish and implement a strategy to provided information and advice for carers.
The present survey aimed to describe and compare the main needs and problems experienced by informal caregivers of Black Caribbean and White native-born patients in their last year of life. Out of the 106 Black Caribbean and 110 White patients identified as dying during the survey period, 50 interviews per ethnic group were conducted, a response rate of 47% and 45%. Out of these, 31 respondents representing Black Caribbean and 28 representing White dependants said that they bore the brunt of caregiving. Compared with those who cared for White dependants, those who cared for Black Caribbean dependants were more likely to be women (84% versus 46%, χ2 = 9.21, 1 d.f., asymptotic P = 0.002) and younger than 55 years of age (73% versus 37%, χ2 = 7.60, 1 d.f., asymptotic P = 0.006). The personal-care tasks which caregivers assisted their dependants with were similar, as were the informal resources they drew on. Many caregivers reported restrictions in their daily lives; this was more pronounced for those who cared for Black Caribbean dependants (χ2 = 6.40, 2 d.f., asymptotic P = 0.041, exact P = 0.039). Research is required to provide a qualitative narrative of the meaning caregivers from different communities ascribe to caring, and the formal and informal resources which they need to support them.
General medical practitioners (GPs) and members of the primary care team have a pivotal role in supporting unpaid carers in their caring role and helping them to maintain their own health and well-being. This paper investigates the difference that caregiving makes to individuals’ access to and use of GP and primary care services. It is based on longitudinal analysis of carers’ contacts with GPs, and a review of the literature including evaluations of measures to improve primary-care-based support for carers. Men increase their consultation rates with GPs when taking on a caring role. In contrast, women who look after someone in the same household and carry heavy caring responsibilities have relatively less contact with GPs than expected. According to the literature, carers report a range of difficulties accessing primary health care. A five-fold typology is described covering barriers arising from: professional responses to the carers’ role; the way services are organized and delivered; language or culturally held beliefs and practices; carer or care recipient characteristics; and unmet information needs. Various measures to improve carers’ access to primary care have been introduced to overcome these barriers, but robust evidence of cost and utility is required to judge their acceptability and effectiveness for both carers and GPs. Although good practice guides, quality standards and evaluation tools are available to help improve primary care support for carers, further investigation of carers’ help-seeking for health care, and the factors involved, is required to underpin the prospects for developing a genuine partnership between unpaid carers and health professionals.
Taking as its starting point the establishment of the Standing Commission on Carers in 2007 and the launch of the National Strategy for Carers in 2008, this article explores who carers are and how demographic changes are likely to impact on carer numbers. It deduces that the need for care is likely to rise significantly in the near future and as such carer numbers will grow. It argues that future policy must take this, and the importance of carers themselves being supported, into account. The article's main focus is on a carer community that has remained largely hidden, that is, imprisoned people who are caring for other prisoners. The extent and nature of the rapidly increasing prison community is discussed with particular attention being drawn to prisoners' health. The high prevalence of poor health in prison is attributed to a complex combination of circumstances. Research (particularly co-author Julia Tabreham's PhD study 'Prisoners' Experience of Healthcare in England) is used to demonstrate that prisone [...]
Background: Individual assessment of needs has been recognised as the most appropriate way to allocate health and social care resources. These assessments, however, are often made by the staff or by a carer who acts as an advocate for the user themselves. Little is known about how these proxy measures compare to how individual patients perceive their own needs.
Aim: The aim of this study was to measure and compare ratings of need for older people with mental health problems by the older person themselves, their carer, and an appropriate staff member.
Method: One-hundred and one older people were identified from various mental health services and 87 users, 57 carers, and 95 staff were interviewed using the Camberwell Assessment of Need for the Elderly (CANE) to identify met and unmet needs.
Results: Users identified significantly fewer of their needs (5.5) than either staff (8.1) or carers (8.3) did, but this difference was accounted for by people with dementia reporting less needs. Users identified fewer psychological or social needs (e.g. daytime activities, company, or carer distress) than staff or carers did. The average Kappa indicating level of agreement between staff and user was 0.52, between user and carer was 0.53, and between carer and user was 0.58. This showed only a fair level of reliability between different ratings of need.
Conclusions: User perspectives should be given a high priority when assessing individual needs. Fears that assessment of need would be unduly time-consuming or would simply reflect individual demands should be allayed. A user-based assessment will assist healthcare providers to prioritise needs according to what the user themselves consider to be most important, beneficial, and acceptable to them. Reliance solely on assessment by staff or carers may not lead to the most equitable or appropriate use of services. Copyright © 2003 John Wiley & Sons, Ltd.
Family carers are the most important source of dementia care, especially among ethnic minority populations, who are less likely to access health or social services. The evidence base on the carer experience in these communities is profoundly limited.
To explore the caregiving attitudes, experiences and needs of family carers of people with dementia from the three largest ethnic groups in the UK.
A qualitative study, using a grounded theory approach. In-depth individual interviews were conducted with 32 carers of people with dementia (10 Black Caribbean, 10 south Asian, 12 White British).
Carers were identified as holding a ‘traditional’ or ‘non-traditional’ caregiver ideology, according to whether they conceptualised caregiving as natural, expected and virtuous. This informed feelings of fulfilment, strain, carers' fears and attitudes towards formal services. The majority of the south Asian, half of the Black Caribbean and a minority of the White British participants were found to possess a traditional ideology.
The findings suggest that specific cultural attitudes towards the caregiving role have important implications for how carers can best be supported.
Background: Current end-of-life care policy and guidance recognises the important contribution of family carers, recommending that their needs should be assessed to support them in their caring role. How regular carer assessment is to be achieved is unclear, particularly because there is no evidence-based tool for directly assessing carers’ support needs that is suitable for use in end-of-life home care practice.
Aims: To obtain carers’ perspectives of key aspects of support needed during provision of end-of-life care at home and to develop a carer support needs assessment tool suitable for use in everyday practice.
Design: Qualitative using focus groups and telephone interviews. Thematic analysis uses a framework approach.
Setting/participants: 75 adult bereaved carers who were family members/friends of patients referred to five Hospice at Home services in the UK.
Results: Carers’ needs fell into two distinct groupings of key support areas or ‘domains’: support to enable them to provide care for their relative and more direct personal support for themselves. Many aspects of supportive input were common across domains, for example, anticipatory information, explanations or being included in the care process. Therefore, the tool was designed as a screening measure, to identify support needs requiring further detailed assessment.
Conclusions: The Carer Support Needs Assessment Tool (CSNAT) is an evidence-based direct measure of carers’ support needs in 14 domains. It is short but comprehensive in approach and thus suitable for both end-of-life care research and practice. Further work has been undertaken to test its psychometric properties.
There is a continual need to support and assist carers who play a central role in providing informal care for a relative. This approach to care provision must have a strong foundation based on liaison between the family carers, professional carers and the older or disabled person who is the focus of care. Services that enable effective communication using videoconferencing, interactive communication, tailored Web based programs and other specific resources configured for the needs of the individual can help carers carry out their role effectively. The initiative described in this paper uses a combination of telematic focused interventions to meet the needs of carers and provides an in-depth overview of the ACTION telecare project.
The ACTION (Assisting Carers using Telematic Interventions to meet Older persons’ Needs) project was set up and funded because of the need to develop supportive methods for carers and older people. The initiative was designed to improve autonomy and maintain independence and quality of life for people in their own homes and therefore reduce the need for institutional care. This has an economic as well as a social dimension. The project has demonstrated that with the involvement of users at all levels it can fulfil this need. The role of the ACTION project was to develop a cost-effective telecare system for the provision of education, information and support and has been demonstrated with successful results.
The objective of this pilot Norwegian intervention study was to explore whether use of information and communication technology (ICT) by informal carers of frail elderly people living at home would enable them to gain more knowledge about chronic illness, caring and coping, establish an informal support network and reduce stress and related mental health problems. Potential participants were close relatives of an elderly person with a diagnosis of a chronic illness dwelling in the same household who wished to continue caring for their relative at home, were 60 years of age or older, had been caring for less than 2 years, were a computer novice and had Norwegian as their first language. Nineteen elderly spousal carers participated in the study from two municipalities in eastern Norway. The project commenced in January 2004 and consisted of a multimethod evaluation model. Outcomes measured included carers’ social contacts (measured by the Family and Friendship Contacts scale); burden of care (measured by the Relative Stress scale); and knowledge about chronic disease and caring, stress and mental health and use of ICT (examined via a composite carer questionnaire). These quantitative data were collected immediately prior to the study and at 12 months. Qualitative data were also collected via focus group interviews with participant carers at 7 months. At follow-up, quantitative measures did not reveal any reduction in carer stress or mental health problems. However, carers reported extensive use of the ICT service, more social contacts and increased support and less need for information about chronic illness and caring. Contact with and support from other carers with similar experiences was particularly valued by participants. The intervention also enhanced contacts with family and friends outside the carer network. Thus, it can be seen that ICT has the potential to contribute to health promotion among elderly spousal carers.
Teenage carers met nurses, doctors, political and NHS leaders at London Zoo to highlight the health and social care needs of an estimated 166,000 young carers in England.
In this article, the authors highlight the need for a Code of Practice (CoP) to address the communicative needs of people with dementia and their formal and informal carers. The authors also detail a proposed CoP, as well as an innovative and inclusive consultation process through which the authors and other stakeholders will produce a complete final working version. The authors produced a three level framework for a proposed CoP. Level 1 is a statement of beliefs and principles underlying a person-centred and empowering approach to effective communication with people with dementia. Based on this, Level 2 consists of components of communication strategies and considerations for effective communication. The authors have produced three examples of level 2 components, and these are detailed here. Level 3 of the proposed CoP will consist of practical and individualized advice on actual communication with people at various stages of dementia. The authors also outline a regime for empirically testing the efficacy of the CoP in different contexts, and discuss implications for research and for communication practices in health care contexts.
The importance of informal carers has only been partially recognised in the UK. A brief examination of recent policy such as the UK Carers Act will highlight the need for further action in this area. The conceptual debate about ‘what is caring’ is summarised: does it involve physical activities only? Are emotional elements also involved? The significance of the informal caregiver's role is discussed. Informal caregiving can bring rewards, but it often has to coincide with other equally demanding roles including employment. Moreover, psychological distress is common among informal carers generally, and the likelihood of poor psychological well-being is greater in carers of people with dementia compared with relatives of older people without dementia. The need to ‘care for carers’ is discussed. Many interventions aimed at caregivers are inadequate, and the optimum type of intervention may vary depending on the needs of the individual carer. Wider social and demographic changes may jeopardise the informal caring network, as it currently exists. Should our ‘invisible’ carers become unwilling, or unable, to sustain their caring role then the consequences could be bleak.
This code of practice sets out the requirements for local authorities in relation to the provisions contained in Part 2 of the Social Services and Well-being (Wales) Act 2014. These cover the general functions of a local authority, including assessment of the needs of a population for social care and other services such as those that promote well-being, and the promotion of social enterprises, co-operatives, user-led services and the third sector. In addition, this part covers how persons exercising functions under the Act should ensure they meet their duties to promote the well-being of people who need care and support and carers who need support, how local authorities must provide a range of preventative services, and how local authorities should discharge their duties in relation to the provision of a service for providing people with information and advice relating to care and support; and assistance in accessing care and support.
Background: Use of technology to structure and support the daily activities of the residents in a small-scale group accommodation (SSGA) for dementia is a new innovation in the Netherlands. This paper presents the process of development of this new way of structuring activities and the findings of a pilot study looking at the experiences of using this device in people with dementia.
Method: A qualitative method was chosen, data were collected using individual interviews with the residents (n = 6), focus groups interviews with informal carers (n = 5) and members of staff (n = 6). Data were analysed using Ritchie & Spencer’s framework (1994).
Findings: Three main themes emerged: issues regarding the implementation, needs for further development and the learning experiences acquired during the development. The majority of the residents were happy with the use and function of the memory aid. However, the occurrence of installation errors, limited ease of use and a lack of knowledge regarding the function and use of the memory aid were issues that prevented a successful implementation. Findings highlighted shared views about ways of improving through adaptation of the software program and additional technological applications; internet connectivity, improving its accessibility by using a remote control and adding videos and photos.
Conclusion: Lessons are learned about the use and transferability of this innovation in people with dementia and other vulnerable target groups including those with learning disabilities as well as its limitation and the needs for further development.
We report findings from a study that set out to explore the experience of older people living with assisted living technologies and care services. We find that successful ‘ageing in place’ is socially and collaboratively accomplished – ‘co-produced’ – day-to-day by the efforts of older people, and their formal and informal networks of carers (e.g. family, friends, neighbours). First, we reveal how ‘bricolage’ allows care recipients and family members to customise assisted living technologies to individual needs. We argue that making customisation easier through better design must be part of making assisted living technologies ‘work’. Second, we draw attention to the importance of formal and informal carers establishing and maintaining mutual awareness of the older person’s circumstances day-to-day so they can act in a concerted and coordinated way when problems arise. Unfortunately, neither the design of most current assisted living technologies, nor the ways care services are typically configured, acknowledges these realities of ageing in place. We conclude that rather than more ‘advanced’ technologies, the success of ageing in place programmes will depend on effortful alignments in the technical, organisational and social configuration of support.
Social care is rising up the government’s political agenda. When care minister Ivan Lewis responded to this year’s hard-hitting State of Social Care report from the Commission for Social Care Inspection (CSCI) with a review of eligibility criteria, he was announcing a policy shift with implications far beyond social care.
The CSCI’s report said that the current care system is a postcode lottery, and that the rather ironically titled Fair Access to Care Services (FACS) “is used as a crude tool to limit demand and leading to overwhelmingly poor quality life experiences for those who are deemed ineligible”.
A postal survey of forensic psychiatric facilities in England and Wales was undertaken to obtain information about the services provided for carers of in-patients within these services.
Forensic psychiatric services vary in the support and facilities provided for carers. Many do not comply with current legislation for carers. Most units informed carers of their rights to have an assessment, but only a minority provided facilities for carers from Black and minority ethnic backgrounds.
Forensic psychiatric services should meet standards for the involvement and support of carers in mental health settings, and comply with legislation for carers.
This paper presents some of the key findings from a study about supporting carers in employment. It describes the qualitative experiences of family carers for older people who are in paid employment, paying particular attention to their views on assessment and service provision. The perspectives of other key stakeholders, including staff from statutory and independent sector agencies, are also considered. Support for carers in employment is one of the five priority action areas underpinning the National Strategy for Carers (DoH, 1999). However, the findings from this study reveal that carers in employment have a limited profile at strategic level and their specific needs are rarely addressed in mainstream health and social care planning processes. The findings also suggest that assessment and care management practices are failing to support carers in relation to their employment aspirations. The effectiveness of health and social care assessments in identifying and exploring the needs of carers in employment is limited and very few separate carer assessments are completed. Carers' first‐hand experiences of service provision are described. Deficits in current services are identified and examples of good practice are highlighted. The paper concludes by outlining the implications for policy and practice. It is suggested that flexible support, underpinned by partnerships between employers and staff from statutory and independent sector agencies, is the key to supporting carers in employment.
Of the UK‟s approximately six million carers, around half are aged over 50. A recent survey of carers in England showed that people near or over retirement age undertake a high proportion of caring. Although on average, 12% of the population provide unpaid care for a friend or family member, this increases to 18% for those aged 55–64, 16% for those aged 65–74 and 13% for those aged 75 and above. This comes at a time when others, who do not have caring responsibilities, are planning their retirement, looking forward to long put-off activities, getting involved in their local communities or enjoying their grandchildren. Others, perhaps into their retirement, are enjoying time for themselves, winding down and taking things a little easier as they get older.
“We cannot have a retirement like other people do – there‟s always a timetable to stick to.” For many older carers, planning or enjoying their retirement is simply not an option. At a time when their own heath may be deteriorating, many find themselves exhausted and constantly anxious, rarely getting a break from caring. Carers aged 60–69 often juggle caring – perhaps for more than one person, for example a parent and an adult son or daughter – with the demands of work and financial pressures while those aged 70 and above often find it difficult to cope with the physical demands of caring. For those caring for a partner, the change to a relationship can be hard to adjust to. As well as the daily stress of caring, a feeling of loss – of a relationship or of precious time – can cause great distress. Almost all carers feel frustrated when health professionals do not involve them as a full partner in care. Almost all worry about what the future will hold for them and the person they care for. The Princess Royal Trust for Carers carried out a survey in early 2011 of carers aged 60 and over from across the UK, to find out more about their lives and the challenges they face.
Background: Population ageing has significant effects on societies. The organization of care for dependent old people is one of the key issues for ageing societies. The majority of care for homebound dependent old people in Slovenia is still performed by informal carers, even though the use of formal services has been increasing over the last 20 years. The proportion and characteristics of people with unmet needs are important for the development of long term care social policy.
Method: The SHARE (Survey of Health, Ageing and Retirement in Europe) survey was used to assess the determinants of care arrangements and of unmet needs of the aging population in Slovenia. Multinomial regression analysis was used to evaluate individual and contextual determinants of care arrangements and unmet needs.
Results: The proportion of older people with unmet needs is 4%. As expected, “needs” (Functional impairment OR=4.89, P=0.000, Depression OR=2.59, P=0.001) were the most important determinant, followed by the predisposing factor “age” (age OR 1.15, P=0.000) and two enabling factors, namely:“community setting and “availability of informal care within household” (Urban areas OR=.47, P=0.021; Household size 3+ OR=2.11, P=0.030).
Conclusion: This study showed that there are a proportion of older people in Slovenia with severe needs for care, which are being unmet. As shown by the importance of enabling factors, social policy should encourage the development of formal services in rural areas and elaborate policy measures for informal carers.
Carers are a high-profile group in Gordon Brown’s government. Despite this, the degree to which they are considered in mainstream policies varies. Undoubtedly, some policies offer immense help to carers but others appear to be working against them.The article calls for a more cohesive policy for carers which takes into account the needs of the whole family, especially children. Young carers often miss school to look after parents, but are usually overlooked by policymakers.
OBJECTIVE: To compare the mental health and vitality of people caring for a family member with a disability with those of the general population. Second, to identify factors experienced by carers that put them at risk of poor mental health and vitality.
DESIGN: Cross-sectional design where logistic and multiple regression analyses were used to compare rates of mental health problems and vitality between carers and the general population while controlling for demographic characteristics. In addition, logistic and multiple regression using data from the survey of carers were used to identify risk factors for poor mental health and vitality that were particular to caregiving.
PARTICIPANTS AND SETTING: A randomly selected representative survey of 1002 carers from the Australian Centrelink administrative database (June 2006) who received government payments to care for a person with a disability or severe medical condition, or a person who was frail aged. A sample of 10,223 non-carers was drawn from the fourth wave of the Household, Income and Labour Dynamics in Australia Survey, a nationally representative household panel survey (August 2004 to February 2005).
MAIN OUTCOME MEASURES: Mental health and vitality as measured by the Medical Outcomes Study 36-item Short-Form Health Survey.
RESULTS: Compared with the general population, carers were at significantly greater risk of having a mental health problem and lower levels of vitality, even after controlling for demographic characteristics. For carers, the risk factors for poor mental health and lower levels of vitality were caring for a person with a disability with higher care needs, experiencing greater levels of financial stress, lower levels of support and worse family functioning.
CONCLUSION: Carers are at greater risk of mental health problems and lower energy levels than the general population.
While there is increased recognition of the role of family carers in supporting adults with social care needs, some groups of carers are overlooked or hidden from professional view. Carers of people with substance misuse problems may be among this group since they are at risk of feeling guilty and stigmatised; targeting and eligibility criteria may concentrate professionals’ activities on people with high levels of need for practical support and there may be complex family dynamics where the role of carer does not fit traditional models. This article draws on a study of carers’ workers (professionals whose role entailed a specific remit to work with carers, such as carers support workers) and family carers undertaken in four areas of England. A total of 86 interviews were conducted (late 2011–2012), of which, just over a quarter (26%) involved some discussion of substance misuse. The findings were analysed thematically. The findings from the study were later reported to a focus group of practitioners and carers with experience of drug-and-alcohol support for validation in 2014. Key themes in relation to social work practice with carers of people with alcohol and other drug problems were those of insecure funding of voluntary sector carer services; balancing generic support for family carers and specific support for certain groups of carers; and feelings among carers that the drug-and-alcohol problems experienced by the person they were supporting contributed to them feeling excluded from general carers’ support. The article concludes that drug and alcohol social workers should be alert to the implications of the Care Act 2014 and its provision for carers, and that carers’ workers should be confident in being able to refer carers to appropriate support in either general or specific settings or raise this as an unmet need if such provision is not adequate locally. Social work trainers and educators should ensure they are working within evidence-based interventions to enhance professional capacity and capability.
Increasingly greater numbers of older parents are providing care at home for their sons and daughters with intellectual disabilities. As attention needs to be paid to the supports needed by such families to assist them with their caregiving activities, it is prudent to identify the types of supports that will be needed when the parents are no longer able to provide care. Working with a cohort of older parent carers in Prince Edward Island, Canada, the authors undertook to examine older carer concerns and planning issues. Using both qualitative and quantitative methods to explore the key issues that older parents of sons and daughters with intellectual disabilities are currently facing and their preferences for care in the future, the authors initiated a population-case-finding process, undertook pilot interviews with a sample, and then used the resultant qualitative data to form the quantitative component of the study. Of 132 identified families in the province, 10 parents voluntarily participated in pilot interviews, and 33 parents agreed to complete in-depth interviews. Analysis of qualitative data resulted in the following five themes: (1) worry about the future care of son or daughter; (2) concern about services funding; (3) having housing and care options; (4) lack of provider understanding of carer's needs; and (5) helping son or daughter become a productive and active member of society. Key issues identified through quantitative analysis included interactions with the government, the need for respite care, and meeting social and emotional needs. Preferred types of housing and care options included “small option homes” and services that provide care to both older parents and their sons and daughters. The authors' results emphasize the necessity of adequate supports being made available to older parents who wish to support their sons and daughters with intellectual disabilities at home and to ensure that desired supports are available in the future when they are no longer able to provide care.
An action plan for the implementation of the recommendations set out in the Bamford Review of Mental Health and Learning Disability, an independent review of legislation, policy and service provision, concluded in August 2007. Broadly the review called for: continued emphasis on promotion of positive mental health; reform of mental health legislation; a continued shift from hospital to community-based services; development of a number of specialist services, to include children and young people, older people, those with addiction problems and those in the criminal justice system; and an adequate trained workforce to deliver these services. The plan sets out in detail key actions aimed at: promoting positive health, wellbeing and early intervention; supporting people to lead independent lives; supporting carers and families; providing better services to meet individual needs; and developing structures and a legislative framework.
The purpose of this guidance is to secure the implementation of the Adult Autism Strategy “Fulfilling and Rewarding Lives: The Strategy for Adults with Autism in England” 2010 as updated by Think Autism (2014) by giving guidance to Local Authorities, NHS Foundation Trusts and NHS bodies. The guidance focuses on the areas which section 2 of the Autism Act 20097 requires to be addressed, in each case identifying what Local Authorities, Foundation Trusts and NHS bodies are already under a duty to do under legislation, what they are expected to do under other existing guidance, and what they should do under this guidance. Local Authorities, NHS bodies and Foundation Trusts should already be doing much of what is expected of them in complying with this guidance as they should have followed the 2010 statutory guidance (which this guidance builds on and replaces).
This leaflet gives information on the council tax and the separate water and sewerage charge for:
people with a disability; people who are severely mentally impaired; carers; residential hospital patients; people living in private hospitals; people who are being looked after either in private hospitals or in accommodation provided by a care home service in which they are receiving treatment, or a high level of care, or both.
Original information on Scottish Government website.
Background People are not expected to die from multiple sclerosis although, as the condition progresses over a period of time, some people become increasingly disabled and will require assistance with all activities of daily living. Their partners invariably carry out these tasks. Objective To gain a deeper understanding of the experiences of the partner living with and caring for a spouse disabled by multiple sclerosis. Methodology In a qualitative study, eight partners who live and care for a person with multiple sclerosis were interviewed using a semi-structured questionnaire to explore their experience of their role. Results The interview transcripts were analyzed using a thematic framework approach. Codes, themes and five categories were identified, which were worry, planning, frustrations, commitment to marriage and coping strategies. These categories were examined using quotes from the transcripts as evidence. Conclusion This qualitative study identified that these couples had been married for at least 20 years before disability of the spouse significantly affected their lifestyle. Partners felt obliged to continue in their caring role due to a sense of duty and commitment of marriage. Partners felt a sense of loss as they prioritized the health and needs of their spouse above their own and, finally, partners lost their identity as husband/wife as they were called ‘the carer’. Partners felt out of control due to the unpredictable and progressive nature of MS and because it consumed their life 24 hours every day. Partners often felt guilty at not being satisfied with their life and wanting some independence
A consultation on the delivery plan of the Welsh Government’s strategy to improve mental health and well-being, for the period 2016-19. The strategy consists of five chapters and is underpinned by 18 outcomes which are set out in this document. Strategy outcomes and delivery plan priority areas have been mapped against the goals of the Well-being of Future Generations (Wales) Act (2015). The priority areas identified in the delivery plan are: all children have the best possible start in life, enabled by giving parents / care-givers the support they need; all children and young people are more resilient and better able to tackle poor mental well-being when it occurs; children and young people experiencing mental health problems get better sooner; people at working age are more resilient and better able to tackle poor mental well-being when it occurs; people with mental health problems, their families and carers are treated with dignity and respect; services meet the needs of the diverse population of Wales; People with a mental health problem have access to appropriate, evidence based and timely services; People of all ages experience sustained improvement to their mental health and well-being through access to positive life chances; Wales is a ‘Dementia Friendly Nation’;The quality of life for older people is improved, particularly through addressing loneliness and isolation.
Original document on the Welsh Government website.
AIM: To develop an assessment tool for the collection of information on carers' needs and to pilot test same. BACKGROUND: No formal assessment of the needs of carers is undertaken by Public Health Nurses (PHNs) in the West of Ireland. METHOD: An assessment tool which took the form of a questionnaire was designed based on an earlier needs analysis, a literature review and qualitative data obtained with carers at two focus groups. Sixty carers were involved in the pilot study of the tool. FINDINGS: Carers found this model made them feel valued, created awareness about the effects of caring and provided them with information. They recommended its introduction. CONCLUSION: The carers and PHNs found the assessment tool to be useful and comprehensive in its approach. However, it requires modification, with specific attention being paid to the validity and reliability of the tool.
The expansion of the older population suggests that there will be significant numbers in need of care and support in their own home environment. Yet, little is known about the kind of situations professionals are faced with and how they intervene in the living environment of older people. Qualitative data were collected over a period of 1.5 years from a multi-disciplinary community-based geriatric team in the Netherlands, and participant observations carried out. Forty-two cases discussed within the team meetings were analysed. Results demonstrate that providing care to older people is a dynamic process and revolves around various paradoxes as experienced by professionals. This is illustrated by presenting three paradoxes that emerged within the data: respecting autonomy versus preserving safety; the care needs of the care recipients versus the capacity of their informal carers to cope; and holding a formal orientation versus a tailored orientation on tasks. Providing care in the home environment of older people requires from professionals a continuous anticipation of (un)expected evolutions in situations of their care recipients. In order to optimally support older people professionals need ‘professional discretion’. They must be supported to systematically reflect on and legitimize their intervention strategies.
A patient's ability to be cared for and to die at home is heavily dependent upon the efforts of family caregivers. Considerable stresses are associated with such caregiving, including physical, psychosocial and financial burdens. Research has shown that unmet needs and dissatisfaction with care can lead to negative outcomes for caregivers. While many family caregivers also report caregiving as life-enriching, some report that they would prefer alternatives to care at home, primarily because of these associated burdens. Little is known about which interventions are most effective to support family caregivers ministering palliative care at home. Well-designed studies to test promising interventions are needed, followed by studies of the best ways to implement the most effective interventions. Clinically effective practice support tools in palliative home care are warranted to identify family caregiver needs and to ensure that patients and their family caregivers have a choice about where care is provided.
This strategy has been developed around six key areas of concern, which were identified during a period of consultation with carers. These include the identification of those acting in a caring role, information for carers, support services, the special needs of young carers, training and employment. It is estimated that there are over 185,000 unpaid carers in Northern Ireland. Their contribution to health and social care cannot be overstated. This strategy sets out a vision of what needs to be done to provide those carers with the practical support they want and need to allow them to continue caring and, at the same time, to have as much access as possible to the same opportunities that the rest of us enjoy.
Purpose. To summarize qualitative studies from the last decade that focus on experiences of caring for stroke survivors and to describe challenges, satisfactions and coping strategies.
Methods. A systematic review of qualitative studies identified from English language medicine, nursing and psychology databases from 1996–2006 was undertaken.
Results. Seventeen qualitative studies fitting the inclusion and exclusion criteria, mostly from the USA, were identified. All used carer interviews. These studies corroborate the quantitative research, commonly describing difficulties including emotional responses, uncertainty and associated information and training needs. However, compared with quantitative research, qualitative studies provide a more detailed, complete picture of carers' experiences and identify additional areas including role and relationship changes, positive outcomes and coping strategies.
Conclusions. Qualitative studies add significantly to our understanding of carers' experiences. Caring for stroke survivors is often challenging but focusing on the difficulties and not drawing attention to successful management strategies and satisfaction reported by carers, limits understanding and reduces the chances of providing appropriate support. Future qualitative research should consider the implications of the timing of collection more carefully and should move away from simple content or thematic analysis which tends to emphasize similarities amongst carers and should now focus on understanding carer diversity. Acknowledging this diversity should maximize the chances of providing appropriate support.
Background: Approximately 10% of the UK population have an unpaid caring role for a family member or friend. Many of these carers make a significant contribution to supporting patients at the end of life. Carers can experience poor physical and psychosocial wellbeing, yet they remain largely unsupported by health and social care services. Despite initiatives for general practices to identify carers and their needs, many remain unidentified. Neither are carers self-identifying and requesting support. This study set out to explore the barriers to, and consider strategies for, identifying carers in primary care.
Methods: We integrated findings from three data sources – a review of the caregiving literature; a workshop with researchers who have undertaken research with those caring at the end of life, and focus groups with carers and health professionals.
Results: Three categories of barrier emerged. 1) Taking on the care of another person is often a gradual process, carers did not immediately identify with being a ‘carer’ – preferring to think of themselves in relational terms to the patient e.g. spouse, sibling, son or daughter. Often it was health and social care professionals who encouraged carers to consider themselves as an unpaid carer. 2) As the cared-for person’s condition deteriorated, the caring role often became all-encompassing so that carers were managing competing demands, and felt unable to look after their own needs as well as those of the cared-for person. 3) There was ambiguity about the legitimacy of carer needs and about the role of the primary health care team in supporting carers, from both the perspective of the carers and the health professionals. GPs were thought to be reactive rather than proactive which discouraged carers from asking for help.
Conclusions: The needs of carers have to be legitimised to ensure primary care staff are proactive in their approach and carers are empowered to utilise the support available. Strategies to identify carers have to be sensitive to the complex dynamics of a caring relationship as well as the primary care context. Identification is a key factor in improving support for carers themselves and to enable them to support the patient.
This briefing paper draws attention to the experience of black and minority ethnic carers in the context of mainstream service provision and recent policy developments such as the National Carers Strategies, service user and carer involvement and the personalisation agenda. It acknowledges that marginalisation is often a consequence of lack of support for both carers and black and minority ethnic communities in health and social care. The paper highlights the diversity of carers from these ethnic backgrounds and the multifaceted impact of discrimination. Discussion focuses on the hidden cost of caring, the fact that black and minority ethnic carers are not 'hard to reach' but 'easy to overlook', whether appropriate provision should be through mainstream or separate black and minority ethnic services, service user and carer involvement in health and social care, and the fact that black and minority ethnic carers are not a homogeneous group.
Young carers provide a significant contribution to society in their caring role, which is in line with the UK Government's Big Society agenda. In contrast with their contribution to society, young carers have huge associated costs related to poor outcomes and the numbers that end up not in employment, education or training (NEET). Missing school due to caring responsibilities is likely to have affect future education and job prospects. Understanding the impact of the caring role on the school experience of young carers will enable school nurses to provide appropriate support for young carers, improving their school experience and subsequent outcomes.
Stroke is a very common cause of adult disability often leaving stroke survivors dependent on others. Much of this support comes from informal carers. Research has demonstrated the importance of these carers to survivors’ recovery but also suggests that caregiving has adverse consequences. Meta-ethnography was applied to review qualitative research looking at informal stroke carers’ experiences and responses to caring. Electronic databases from 2006 to 2009 were searched and after application of inclusion and exclusion criteria, seven studies were reviewed.
The experience of caring for stroke survivors centres around change and loss overlaid with uncertainty. Change includes changes in roles and relationships. Losses include former relationships, autonomy and taken-for-granted futures. These challenge carers’ perception of their identity.
Carers respond cognitively and practically and attempts to reconstruct their lives may lead to acceptance and adjustment. This process is one of biographical disruption for carers but can result in personal growth.
If carers and stroke survivors are to be supported, acknowledging specific issues including role and relationship changes and perceptions of reduced autonomy may be more valuable than attempting to reduce carer burden or strain. Clinicians frequently only see families over short periods and may therefore have little understanding of the major, long-term disruptive impact of caregiving. If professionals working with families of stroke survivors are made aware of this and of the necessity for carers to come to terms with their changed roles and identities, they will be better equipped to understand and respond to carers’ practical and emotional needs.
This study assesses the effect of having informal support available at home on inpatient care use in Switzerland. The main contributions are to consider the availability of care regardless of its source, measured by multiple-adult living arrangements, and to examine this effect by type of inpatient care and source of potential support. A two-part model with region and time fixed effects is estimated to determine the impact of informal care availability on the likelihood of hospitalisation and length of stay, conditional on hospitalisation. The analysis is conducted on a sample of individuals aged 18+ from four waves of the Swiss Household Panel survey (2004–2007). Overall, availability of informal care has no impact on the likelihood of hospitalisation but does significantly reduce length of stay by 1.9 days. Available support has no effect on the shortest stays (up to 10 days), but has a significant impact on acute care stays up to 30 days and longer stays. Additionally, the effect does not significantly vary whether the source of informal support is a spouse only, a spouse and other adults, or other adults only. These results indicate that social changes leading to an expansion in the proportion of one-person households may increase future inpatient care use.
This paper describes the author’s experience as a new co-facilitator for an Alzheimer’s Disease Family Support Group and reviews the preliminary phase of group practice and the dynamics of the beginning phase of co-facilitating the Alzheimer’s Family Support Group. The paper reviews the needs that Alzheimer Support Group would meet, purpose of the group, agency and sponsorship support for Alzheimer Support Group, recruitment, group composition, group timing and structure, leadership of group, orientation of group members, content of group meetings, group sessions, and anticipated obstacles, and concludes with the importance of empowerment-oriented social workers who share the message that change is possible with others who are struggling, while working side-by-side with them to achieve changes and provide a new beginning – a new path for caregivers – a path of self discovery. As Alzheimer’s disease progresses caregivers and loved ones of people with the disease are often challenged on a daily basis – emotionally, mentally, and physically. Being with other people in similar situations encourages group members to share information, exchange coping skills, give and receive mutual support, vent their frustrations and share their success stories. Caregiving for a person with cognitive impairments can be a very diffi cult task, but knowing that you are ‘all in the same boat’ provides the life preserver to the caregiver – giving nourishment to the soul.
Although most people with Parkinson’s disease are cared for in the community, little is known about family members’ lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers’ lived experiences of palliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson’s disease were interviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had not been fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring for someone with Parkinson’s disease not accessing specialist palliative care services. Participants also reflected upon the physical and psychological impact of caring in the advanced stage of Parkinson’s. A multi-disciplinary team-based approach was advocated by participants. These findings provide important insights into the experience of caregiving to patients with Parkinson’s disease in the home at the end-of-life stage. According to palliative care standards, patients and their carers are the unit of care; in reality, however, this standard is not being met.
In this second of two articles reporting on her research, Jenny Henderson argues that adequate support should be given to carers who wish to care for a person with end-stage dementia at home
There is only a small evidence base to draw upon when choosing assistive devices. Evaluations such as those funded by the Medicines and Healthcare products Regulatory Agency,* Department of Health, United Kingdom, generate data from which evidence-based guidelines can be compiled, but it is often difficult to determine the relative importance of the various factors involved.
To explore the relative importance of the factors related to the choice of bathing devices, the Delphi technique was employed. Thirty respondents were recruited following a formal evaluation of bath cushions and agreed to participate in the study (5 users, 10 informal carers and 15 professional care assistants), with 14 completing the process.
Three rounds were conducted, in which the respondents were asked to review a list of factors to consider when choosing bathing devices, to indicate the most important, to rank them and to comment on the results.
The safety of the user was reported to be the primary concern. The factors that eased the care assistant's task were regarded as less important, but several respondents remarked on the interrelationships between the factors. The ranking of the factors may jeopardise a comprehensive consideration of all the needs assessed, especially with people who have complex requirements. The limitations of the Delphi technique in such situations are discussed.
The images of other people we see on a daily basis in the media invite us all to compare ourselves with, identify with, or aspire to be like whoever is shown. Mostly this activity is of little significance and hardly touches our lives, but the further we know ourselves to be different from the norm then the more challenging those differences become to us.
This article describes the Lesbian and Gay Carers’ Network. The author argues that there remains a deep need within the health and social service sector, and indeed in the residential home sector, to learn more about us as ‘gay’ people, to learn how to empathise so that they feel safe to talk about their relationships and needs, and to encourage them to request help without feeling threatened. When society achieves that then the need for ‘gay’ people to act as a network will decrease, but society is long way from that goal at present.
Although palliative care aims to support family members and informal carers, current evidence suggests that high levels of unmet need persist, and that this population is challenging to work with. This study aimed to 1) measure the proportion of patients that have an informal carer, 2) describe the clinical notes data on existing needs and coping, 3) measure the completeness of assessment data recording, 4) appraise the utility of existing informal carers’ sections in the patient files, and 5) make recommendations for improvement. An audit was conducted reviewing 145 closed patient files. Of these, 100 had identifiable informal carers (69.9%). Although patient data was complete, data was severely lacking on their informal carer. Diverse coping strategies were described, and the primary need was for finance and advice about state welfare payments (n = 64). The findings suggest a need for files to identify and record informal carers as potentially distinct from family members, promote assessment data completion for informal carers on a par with that of patients, and to develop systematic approaches to systems that maximize utility and incorporate multiprofessional input into the development of clinical notes.
The title of the new children's green paper "Every Child Matters" implies inclusiveness, and the paper does indeed highlight a range of client groups with specific needs, suggesting that all children are covered. Asks whether the commitment to inclusiveness is genuine or merely a token gesture. Looks at 5 areas where more could have been done: children entering the country, parents and carers of disabled children, young carers, children with parents in jail, and improving fostering and adoption services. (Quotes from original text)
There is increasing emphasis on enhancing consumer and carer participation in the planning and provision of mental health services. However, health professionals, consumers, and carers have different perceptions about what constitutes optimal care; identifying, negotiating, and meeting their respective needs can be challenging. The aim of the paper is to highlight the challenges of facilitating carer participation in daily practice and emphasise the broader issues that would benefit from more extensive discussion among health professionals. By examining the strategies used to enhance consumer participation, there is the potential to avoid many of the mistakes of the past and create a flexible and responsive framework to increase carer involvement. The authors anticipate that this discussion will resonate with many clinical staff as well as carers themselves. Identifying barriers to carer participation opens the way to promoting collaboration and enhancing care.
Some of the needs that people with dementia and their informal carers currently perceive as insufficiently met by regular care and support services might be alleviated, or even be met, using modern Information and Communication Technology (ICT). The study described in this paper was designed to provide an insight into the state of the art in ICT solutions that could contribute to meet the most frequently mentioned unmet needs by people with dementia and their informal carers. These needs can be summarized as (1) the need for general and personalized information; (2) the need for support with regard to symptoms of dementia; (3) the need for social contact and company; and (4) the need for health monitoring and perceived safety. Databases that were searched include: PubMed, Cinahl, Psychinfo, Google (Scholar), INSPEC and IEEE. In total 22 websites and 46 publications were included that satisfied the following criteria: the article reports on people with dementia and/or their informal carers and discusses an ICT-device that has been tested within the target group and has proven to be helpful. Within the first need area 18 relevant websites and three studies were included; within the second need area 4 websites and 20 publications were included. Within the third and fourth need area 11 and 12 publications were included respectively. Most articles reported on uncontrolled studies. It is concluded that the informational websites offer helpful information for carers but seem less attuned to the person with dementia and do not offer personalized information. ICT solutions aimed at compensating for disabilities, such as memory problems and daily activities demonstrate that people with mild to moderate dementia are capable of handling simple electronic equipment and can benefit from it in terms of more confidence and enhanced positive effect. Instrumental ICT-support for coping with behavioral and psychological changes in dementia is relatively disregarded as yet, while support for social contact can be effectively realized through, for example, simplified (mobile) phones or videophones or (entertainment) robots. GPS technology and monitoring systems are proven to result in enhanced feelings of safety and less fear and anxiety. Though these results are promising, more controlled studies in which the developed ICT solutions are tested in real life situations are needed before implementing them in the care for people with dementia. It is recommended that future studies also focus on the integration of the current techniques and solutions.
It is possible that effective information-sharing strategies to improve the quality of care can be developed. Service users, carers and professionals should all be involved in generating such strategies. The ideal information-sharing strategy can be tailored to individuals' needs and requires professionals to make carefully weighted judgements. Professionals need training to help them to understand the roles of carers and to work with carers effectively. Training should be accredited in order to encourage attendance. Fear about breaching patient confidentiality has frequently created a barrier to effective involvement of carers in mental health care.
Diabetes can impose a substantial health burden on older people and their informal carers. If there is evidence of sub-optimal care planning, a lack of empowerment, or under-skilling of those delivering direct diabetes care to this group, independence of the individual will be under threat. This substantially increases the risk of a serious adverse outcome, for example hospital or care home admission. This article identifies the specific needs, treatments and assessments for functional loss and depression in older people with diabetes living in the community, those living in care homes and those in hospital. It also looks at end-of-life care and managing hypoglycaemia.
Chronic obstructive pulmonary disease (COPD) changes family roles and relationship dynamics and the experience of the disease is influenced by family functioning. Merleau- Ponty’s existential philosophy of the body provided the framework for this Heideggerian phenomenological inquiry. Fifteen people with COPD and 14 family members engaged in 58 semi-structured interviews either face-to-face or by telephone. This study identified a difference in the essence of the lived experiences between male and female carers, and between spousal and non-spousal carers in relation to severe COPD. Previous reciprocity framed the level of acceptance of the caring role and perception of care burden. The stories highlight the self-perceived need for women carers to be conscious micro-managers of illness. Male family members would care alongside, lending support and caring in a reactive way as specific needs or crises arose. Caring in COPD required a binding vigilance; a constant need of the carer to monitor the physical and emotional well-being of the sick person that bound them emotionally and cognitively to the task of caring. Carers were the managers of crises and families cared from a perspective of possible death. Family was perceived as the best thing in life. Health professionals should consider the influence of gender, family relationships and the impact of reciprocity when planning support for family caregivers. Further research is required to identify the similarities and differences in family caring between COPD and other chronic illnesses, and to further understand the specific needs of male carers.
Working carers are a key focus of UK policies on health and social care and employment. Complementing national and European evidence, this paper presents a local case study of working carers. It draws on data from a county-wide survey containing a module on caring. Data were primarily categorical and were analysed using SPSS. Three quarters of all carers who responded to the survey were of working age: two thirds were employed and one third had been employed previously. The majority of working carers were mid-life extra-resident women. Over half of cared for relatives were elderly parents/in law; ‘physical illness’ was the primary cause of dependency. A tenth provided intensive care and half reported that caring adversely affected their health. Both were triggers for leaving employment. Two thirds of households received input from services and/or friends/family; being a co-resident carer appeared to mitigate against service allocation. Four issues were identified as pivotal to facilitating employment: access to advice and information, the availability of a matrix of affordable good-quality social-care services, ‘joined up’ needs assessment of the carer and cared for person, and employers identifying carers in their workforce. Europe's ageing profile underscores the study's timeliness.
The main aim of this study was to explore the immediate needs of the relatives of acutely ill older people during hospitalisation. The research question posed was: ‘What are the immediate needs of the relatives of acutely ill older people in the hospital setting?’
A descriptive qualitative approach was utilized, with ethnographic data collection methods and thematic data analysis. Unstructured interviews were conducted with relatives of older people who were admitted for acute care. The setting for the study included two large tertiary referral hospitals located in two area health services in New South Wales, Australia.
Analysis of data revealed two themes: being informed and being there. Being informed describes the nature of the information that relatives need and why this is so important to them. Being there illustrates how relatives perceive their roles and responsibility during hospitalisation. It highlights the importance of this and the impact it has on individuals
The findings highlight the importance of appreciating the family’s experiences in relation to the care of their older family member. They point to the need for education of stakeholders to focus on relatives as well as the older patient, improved assessment incorporating a whole of family approach on admission to hospital, and finally, facilitating positive relationships between ward staff and families.
This examination of the extent to which carers services in Wales are accessible to Black and Minority Ethnic (BME) carers is located within the overall 'Caring about Carers - a Strategy for Carers In Wales (Implementation Plan)', a project initiated by the Welsh Assembly Government. Supported also by the Welsh Assembly Government, and carried out within the auspices of AWEMA (All Wales Ethnic Minority Association) as a BME Carers project, this study sets out to explore the needs of BME carers in Wales and the extent to which they felt that their needs were being recognised and addressed by mainstream services.
This paper provides an account of how family carers were involved in a longitudinal research study that aimed to investigate the needs of ‘new’ family carers of stroke survivors. An account of how the researcher involved carers is provided, followed by one carer's description of the benefits and negative consequences of being involved in the study. Suggestions are made about how to develop good practice with regard to involving people in research. The conclusions highlight that, although rewarding, being involved in research is not without its challenges. However, research participants have much to contribute to the entire research process and its products. It is important therefore to learn lessons about how best to maximise the expertise that carers and others have to offer.
Hull Churches Home from Hospital Service (HCHfH) has been at the forefront of bringing assistive technology into the homes of the elderly with chronic illness’ through Telehealth projects since 2008. Over that period the organisation has had a steep learning curve both in terms of introducing assistive technology to an ageing population and familiarising them with the benefits they go on to experience, building a track record in ensuring assistive technology is used and not rejected, our major work currently involves remote monitoring of clients with cardiac conditions and COPD in the community. HCHfH piloted an assistive technology project in 2013; The Carers Assistive Technology (CATs) project, aimed at supporting the local carers of dementia sufferers through the use of simple technological devices e.g. door charms, memo minders, digital photo albums and PARO the interactive seal cub. Family caregivers of people living with dementia experience a high incidence of psychological distress and physical ill-health associated with caring which can reduce their life expectancy. The dominant causes of carer’s distress include the person living with dementia associated behaviour that challenges, depression, anxiety, risk of falling, social isolation, emotional distress and continual 24 hour support without a break. In 2011 HCHfH carried out a needs analysis, “The needs of informal carers of those living with dementia.” Funded by the Department of Health, involving carers and people living with dementia. The study highlighted that family caregivers would like stimulating support for the person living with dementia and to be given confidence to take time out for themselves. The report indicated this support should be offered to them in their own homes. The pilot aim was to evaluate the use of assistive and ambient technologies in the home of a person with dementia and to measure the effectiveness of the different types of technology available, allowing respite for the carer. Maximising the dementia patient’s ability range within their own home environment, enabling the carer to have a more fulfilling lifestyle, while also facilitating their understanding of the process and evolution of End of Life Care of Dementia and the tools available to assist. By supporting the carers and the patient with their abilities and maintaining their independence in their own home the CATs project aided their understanding of dementia, its stages and the equipment that is available to help with everyday life. It offered both practical and emotional support through a team of highly skilled and suitably qualified staff and volunteers. This programme was particularly relevant as the service was driven by user needs and wishes, rather than a one-size-fits-all deployment mentality. Using assistive technology in the homes of those living with dementia provided an opportunity for the carer to take a break and have a more productive life e.g. access to health care, continue employment and maintain relationships. CATs showed how assistive technology can reduce the anxiety of a person living with dementia, keeping their brain working hard, allowing social interaction and involvement, whilst minimising the feelings of isolation and loneliness.
Purpose – Currently there is no research that explores professionals’ perspectives in supporting carers of a person with an intellectual disability during their relatives admission to a specialist in-patient setting. The purpose of this paper is to report the findings from the second stage of a study that explored the experiences of family carers whose relative was admitted to a specialist National Health Service assessment and treatment unit (ATU) in Wales, UK (James, 2016).
Design/methodology/approach – Aim: to obtain the views of professionals in relation to what they consider are the barriers and facilitators to addressing some of the experiences discussed by carers. Methods: nine professionals working in intellectual disability-specific services participated in four semi-structured interviews and one focus group (n=5) and the data were analysed using a descriptive thematic analysis process.
Findings – Three major themes were developed to represent what professionals identified as a number of individual, organisational and practical facilitators and barriers to the provision of support to carers at this time. Professionals recognised the important role they have in developing relationships with carers during the admission. Key to this relationship is effective communication, collaboration, involvement and the need to be consistently open and honest.
Research limitations/implications – The small sample size could be said to be a weakness and unrepresentative and practice of other professionals. However, what professionals reported had similarities to the findings from other related research. Importantly, the findings have a practical significance in that they can be used to raise awareness and be used to inform the development of future research and practice. The sample could also be criticised for not having representation from a wider range of professionals from across the multi-disciplinary team. However, a strength of the sample is that it did have representation from three different professional disciplines with different roles and responsibilities.
Practical implications – Currently there is very limited research exploring the experiences of professionals in respect of supporting carers during the admission of a relative to a specialist in-patient setting. Professionals demonstrated an understanding of the impact that the additional needs and admission of their relative to an ATU could have on carers. Accordingly, they were able to recognise the important role that they, and other professionals, play in developing relationships as part of providing support to them during this time. Key to these relationships was effective communication and in particular the need to be consistently open and honest.
Social implications – The findings from this study illustrate a gap between the rhetoric of policy, legislation and carer strategies, and practice of valuing and respecting the role that carers. Of particular concern is that some of the relationships that carers have had with professionals have threatened rather than positively endorsed and augmented their role and identity. These engagements with professionals therefore have had a profound effect on the way in which they have understood their value as a carer and their own sense of self. Significantly, the actions and behaviours of professionals play a key role in shaping carers views of themselves and their identity.
Originality/value – Currently there is no research that has explored the views of professionals in respect of support and relationships with carers at this time. The synthesis of findings from stage one of this study with professionals’ perspectives of resulted in the identification of similarities and differences in experiences as well as facilitators and barriers to support provision. In so doing, it has given clear application of the studies findings to practice. This study therefore provides an original contribution to the understanding of this area of carer experience, from the perspectives of professionals and adds to the wider literature exploring the family carer experience.
This is the report of a collaborative study between the Manchester Metropolitan University and the Bibini Centre for Young People to investigate the experiences, needs and access to services of black ‘young carers’ and their families. It is important to highlight that this study was situated within the social and political context of inequality, at a time when interest in the root causes of inequality seems to have been lost; instead, the focus is on ‘managing diversity’ (as if the problem lies in ‘difference’) and grappling with the consequences, not the causes, of social exclusion.
Background: Informal carers face many challenges in caring for patients with palliative care needs. Selecting suitable valid and reliable outcome measures to determine the impact of caring and carers’ outcomes is a common problem.
Aim: To identify outcome measures used for informal carers looking after patients with palliative care needs, and to evaluate the measures’ psychometric properties.
Design: A systematic review was conducted. The studies identified were evaluated by independent reviewers (C.T.J.M., M.B., M.P.). Data regarding study characteristics and psychometric properties of the measures were extracted and evaluated. Good psychometric properties indicate a high-quality measure.
Data sources: The search was conducted, unrestricted to publication year, in the following electronic databases: Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, EMBASE, PubMed, PsycINFO, Social Sciences Citation Index and Sociological Abstracts.
Results: Our systematic search revealed 4505 potential relevant studies, of which 112 studies met the inclusion criteria using 38 carer measures for informal carers of patients with palliative care needs. Psychometric properties were reported in only 46% (n = 52) of the studies, in relation to 24 measures. Where psychometric data were reported, the focus was mainly on internal consistency (n = 45, 87%), construct validity (n = 27, 52%) and/or reliability (n = 14, 27%). Of these, 24 measures, only four (17%) had been formally validated in informal carers in palliative care.
Conclusion: A broad range of outcome measures have been used for informal carers of patients with palliative care needs. Little formal psychometric testing has been undertaken. Furthermore, development and refinement of measures in this field is required.
Ethical dilemmas in community mental health care is the focus of this article. The dilemmas are derived from a discussion of the results of a qualitative research project that took place in five countries of the European Union. The different stakeholders are confronted with the following dilemmas: community care versus hospital care (clients); a life with care versus a life without care (informal carers); stimulation of the client toward greater responsibility versus protection against such responsibility (professionals); budgetary control versus financial incentives (policy makers), and respect for the client versus particular private needs (neighbourhood residents). These dilemmas are interpreted against the background of a value based ethical model. This model offers an integral approach to the dilemmas and can be used to determine policy. The dilemmas are discussed here as the result of conflicting values-namely autonomy and privacy, support and safety, justice and participation, and trust and solidarity.
This study explored the needs, aspirations and expectations of older people and family carers from a range of ethnic communities in Bradford, regarding both formal paid care provision and help from family, friends and neighbours. The focus was on the accessibility, acceptability, appropriateness and responsiveness of services. The study found cross-cultural similarities as well as cultural specificities in experiences and expectations.
Background: Few reports have been published about differences in perspectives on perceived needs among community-residing people with dementia, their family caregivers, and professionals. The aim of this study was to compare these perspectives.
Method: During 2006 and 2007, one-hundred and fifty two interviews of people with dementia and their caregivers about the needs of the person with dementia were performed by four professionals using The Camberwell Assessment of Need for the Elderly (CANE). Professionals’ views on met and unmet needs of people with dementia were obtained for the total sample, family caregivers’ perspectives were gained for 125 people with dementia, and people with dementia’s views on their own needs were obtained for 125 persons with dementia.
Results: People with dementia reported fewer needs compared with the reports of their caregivers and the professionals. The most frequent unmet needs reported by people with dementia, caregivers and professionals were in the areas of daytime activities, company, and psychological distress; however, people with dementia rated psychological distress as the commonest unmet need.
Conclusions: Since the priorities of people with dementia can be different from those of caregivers and professionals, it is important to consider all perspectives when making care plans. Thus, compliance with treatment of people with dementia and also their quality of life could be potentially improved by a more collaborative partnership with them.
Research to identify and assess informal carers of people with a mental illness cared for by the Gloucester Assertive Community Treatment Team and to examine their needs. Carers were assessed using a standardised care programme approach and the help they provided, the effect on their lives and the problems encountered were examined.
Our objective was to develop a validated questionnaire that can measure the extent to which dimensions of caring affect the health of carers of patients with motor neuron disease. An initial 190-item questionnaire was developed from in-depth interviews, focus groups and two pilot studies with carers. Factor analysis was applied to the data obtained from a large survey in the UK that identified the underlying dimensions of caring. The newly formed scales were tested for reliability using Cronbach's α, and for construct validity. The SF36-v2 was the benchmark instrument on which correlations were made to ascertain the relationship with carers’ health. A 34-item instrument was developed which has demonstrated promising evidence of internal reliability and validity for six scales: emotional well-being, physical well-being, self care, disturbed sleep, carers’ support needs and statutory services. High correlations were found with the Mental Component Score summary scale of the SF-36v2 (0.40–0.66). The development and testing of the MNDCQ indicates that as the carers’ score on the MNDCQ increases, suggesting a higher level of burden, they are more likely to report poor health. Further longitudinal studies are needed to further test the instruments’ ability to detect change over time.
The Parkinson's Disease Society has produced a DVD, Being There, which aims to answer the questions and concerns of people newly diagnosed with the condition. Being There provides an insight into symptoms, treatments and life with Parkinson's in general, and includes interviews with people with Parkinson's, carers, and expert healthcare professionals The DVD is divided into four chapters: introduction to Parkinson's disease; treating Parkinson's; living with Parkinson's; and about the Parkinson's Disease Society.
This review considers key areas in primary care regarding the diagnosis of dementia. Issues surrounding assessment, policy and incentives are considered. In addition, the relevance of non-medication approaches for dementia in primary care, which aim to enhance or maintain quality of life by maximising psychological and social function in the context of existing disabilities, is deliberated. Finally, key issues about primary care medication management are considered, and relevant therapeutic strategies with recommendation for a collaborative approach that improve outcomes by linking primary and secondary healthcare services – including general practice and pharmacy – with social care needs are weighed up. A key aspect of such a collaborative approach is to support informal carers in optimising medication.
Objective: To examine the use of respite services among carers of non-institutionalised individuals aged 15 and over with either profound or severe disabilities. Methods: Based on data collected from the Australian Survey of Disability, Ageing and Carers in 2003, the investigation evaluated the statistical significance of a number of carer and recipient characteristics on the likelihood of the use of respite services. Further analysis assisted in identifying the support most desired by the majority of carers (88.6%, n=243690) who have never used respite. Results: The results revealed that social and cultural factors played a critical role in the receipt of respite services. Family relationships were important. Just under one-fifth of all primary carers most preferred more financial assistance in their role as caregiver. After controlling for confounding variables it was found that, compared with other forms of assistance, the desire for an improvement in the primary carers? own health was more likely among non-respite users. This may reflect the carers? preference to improve their own capacity to service the recipient rather than rely on others outside the household. Conclusions: Since the recipients under investigation typically possess core communication restrictions and highly individualised needs, it is speculated that carers perceive family members as better able to interpret and meet the sporadic and individualised care demands of recipients. Implications: Given the low usage of respite services among primary informal carers, policy makers and health organisations need to dispel the ?one size fits all? approach to support services for households.
The Act makes provision about children, families, and people with special educational needs. Specifically, it covers: adoption and children looked after by local authorities; family justice (e.g. mediation); children and young people in England with special educational needs; childminding agencies; the Children's Commissioner; statutory rights to leave and pay; time off work for ante-natal care; and the right to request flexible working. Part 5 of the Act contains various provisions relating to the welfare of children, including giving children in care the choice to stay with their foster families until they turn 21, making young carers’ and parent carers’ rights to support from councils much clearer, reforming children’s residential care to make sure homes are safe and secure and a requirement on all state-funded schools (including academies) to provide free school lunches on request for all pupils in reception, year 1 and year 2.
Purpose – The purpose of this paper is to establish the outcome of wheelchair prescription procedures for carers supporting a wheelchair user with special reference to their health and well‐being.
Design/methodology/approach – A postal questionnaire was used in conjunction with analysis of policy and practice documents in wheelchair prescription and carers' needs.
Findings – The majority of carers reported a wide range of health problems. A relationship between wheel chair type and reported carer pain was noted. Only a minority of carers considered that they had received an adequate carer's assessment, and few had received training in wheel chair management; such training where it had been carried out, led to reduced reports of pain.
Research limitations/implications – The study invites more detailed analysis of both the conditions under which wheelchair prescribing takes place and the impact of assessment and training on carers' health. The study is based on a relatively small, local sample and a more extensive study is called for.
Practical implications – Procedures for prescription of wheelchairs should be reviewed and steps taken to ensure that adequate consideration is given to the health needs of carers and the circumstances under which they will push the wheelchair.
Social implications – More thoughtful prescription of wheelchairs will lead to increased health of carers improving their quality of life and reduce demands on health services and the accompanying risk to their capacity to carry on caring.
Originality/value – The study addresses a neglected topic, which clearly identifies the consequences of inadequate prescription of wheelchairs for the health of carers, a topic generally neglected in the literature.
Looks at standard six of the National Service Framework, which enables carers to have an assessment on their own health and support needs.
Adult abuse can occur in many different settings and situations. It is usually a very complex area of work. Therefore employees need to be aware of situations which may put a vulnerable adult at risk. This has highlighted the need for guidelines and procedures for Social Work Services, Police, Health Services, and independent providers. This multi-disciplinary approach is designed to address the abuse of vulnerable adults in community, hospital and institutional settings, with the focus on both informal and formal carers. These procedures require any responsible person to act with regard to any information which comes to their attention giving reasonable grounds to suspect that a vulnerable adult has been abused. In all instances these procedures and key steps will be followed by all agencies, units and establishments. These procedures and practice guidelines refer to cases where abuse has occurred and specific action is required to ensure the protection of the vulnerable person.
Background: Siblings of children with chronic illness and disabilities are at increased risk of negative psychological effects. Support groups enable them to access psycho-education and social support. Barriers to this can include the distance they have to travel to meet face-to-face. Audio-conferencing, whereby three or more people can connect by telephone in different locations, is an efficient means of groups meeting and warrants exploration in this healthcare context. This study explored the feasibility of audio-conferencing as a method of facilitating sibling support groups
Methods: A longitudinal design was adopted. Participants were six siblings (aged eight to thirteen years) and parents of children with complex neurodevelopmental disorders attending the Centre for Interventional Paediatric Psychopharmacology (CIPP). Four of the eight one-hour weekly sessions were held face-to-face and the other four using audio-conferencing. Pre- and post-intervention questionnaires and interviews were completed and three to six month follow-up interviews were carried out. The sessions were audio-recorded, transcribed and thematic analysis was undertaken.
Results: Audio-conferencing as a form of telemedicine was acceptable to all six participants and was effective in facilitating sibling support groups. Audio-conferencing can overcome geographical barriers to children being able to receive group therapeutic healthcare interventions such as social support and psycho-education. Psychopathology ratings increased post-intervention in some participants. Siblings reported that communication between siblings and their family members increased and siblings’ social network widened.
Conclusions: Audio-conferencing is an acceptable, feasible and effective method of facilitating sibling support groups. Siblings’ clear accounts of neuropsychiatric symptoms render them reliable informants. Systematic assessment of siblings’ needs and strengthened links between Child and Adolescent Mental Health Services, school counsellors and young carers groups are warranted.
That the carers of people with cancer are profoundly affected by their caring role is well established, yet the needs of one particular cohort, i.e. the parents of young adults with cancer, have not been well understood. The majority of carers in this situation are mothers, and it is the impact of the emotional and physical labour entailed by the care of young adults that is the focus of the present paper. Through the analysis of qualitative narrative data contributed by the mothers of young adults with cancer, the aim of this paper is to examine the health effects for women of caring for a young adult son or daughter with a life-threatening illness. The results suggest that there is an impact on the mother's health that results in unspecific, low-grade and chronic psychological and somatic symptoms which the mothers rank as a low priority. The mothers’ attempts to appear to be managing may serve to mask their own health needs from health professionals whose primary concern is the health of the son or daughter. Where psychological distress is admitted, the resulting use of prescribed antidepressants may not be experienced as helpful. The conclusions are that, because of the particular circumstances of caring for a young adult son or daughter with cancer, health professionals’ attention to the mothers’ health throughout the cancer journey may act as a preventative measure for later and more serious ill health.
This Service framework for learning disabilities is one of a set of Service Frameworks which sets out standards for health and social care to be used by service users and carers, to help them understand the standard of care they can expect to receive in Northern Ireland. The Service Framework for Learning Disability aims to improve the health and wellbeing of people with a learning disability and their carers and families by promoting social inclusion, reducing inequalities in health and social wellbeing and improving the quality of health and social care services. The Framework sets standards in relation to: Safeguarding and Communication and Involvement in the Planning and Delivery of Services; Children and Young People; Entering Adulthood; Inclusion in Community Life; Meeting General Physical and Mental Health Needs; Meeting Complex Physical and Mental Health Needs; At Home in The Community; Ageing Well; and Palliative and End of Life Care.
Aim. To develop a goal-oriented praxis theory for enabling safety for relatives when an adult or older patient is close to end-of-life.
Background. This is the second part of a project focusing on the situation and needs of relatives in end-of-life care. Our interpretation of the existing corpus of knowledge pertaining to the needs of close relatives in this situation showed the significance of relatives’ need for safety.
Method. The theory was developed step-by-step, through triangulation of critical review of empirical research in the field, our own clinical experiences from end-of-life care, renewed literature searches and theoretical reasoning.
Theory. The foundation for the theory is taken from the ethical intention of the philosopher Paul Ricoeur. From this, the theory focuses on relatives in the context of end-of-life care with the goal of enabling safety. This is proposed by four aphorisms functioning as safety enablers and these are directed towards the professional's approach and attitude, the relative's concern for the patient, the specific situation for the relative and the patient's end-of-life period as a period in the life of the relative.
Relevance to clinical practice. Implications for end-of-life practice are considered and include aspects for promotion of just institutions in end-of-life care, the significance of negotiated partnership in end-of-life care, enabling safety for relatives living in existential and practical uncertainty in connection with end-of-life care and diversity of relatives’ preferences as they live through this particular period.
Dementia is a challenging, progressive set of conditions which present a large care burden to informal, familial carers. A complex array of health and social care services are needed to support people living with dementia. Drawing on the interlinked 'Duties to Care' and 'Dementia Talking' projects, in this article we focus on British carers' talk about health and social care services. We explore data from a mixed-method questionnaire (n = 185), four focus groups and eleven interviews with informal carers of people living with dementia using thematic discourse analysis. Three themes are discussed: (1) services as a 'maze'; (2) services as overly limited - 'beyond our remit'; and (3) the battle and fighting discourse deployed by these carers. Our analysis highlights that carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work they undertake.
Statistics on service provision in Scotland to older people, people with learning disabilities, people with mental health problems, disabled people, carers and other users. Provides figures on domiciliary care, day care, residential care, private nursing homes, hospitals and special needs housing for each user group.
Original document on Scottish Government website.
There are more than 1 million people in the UK looking after a family member or friend with cancer, but half the number of these carers do not receive support to care. Providing this care significantly affects cancer carers emotionally, physically, and financially. Community and district nurses have a vital role to play in reaching out to these hidden carers and signposting them to the correct support. This article provides tips on identifying carers, including who they are, the challenges they face, and how health professionals can approach and speak to them. It also provides guidance on signposting carers to national and local sources of support in the UK.
This chapter provides an overview of long term care (LTC) policies in Europe and other OECD countries in order to contextualize the findings presented in the other chapters of the book. While the individual country case studies outlined in subsequent chapters offer detailed accounts of LTC policies in various countries throughout Europe, this chapter develops a broad framework based on comparative statistical data, which in turn sets out the general background to transformations that have taken place in recent years with respect to both the demand for and the institutional responses to LTC. This chapter is organized around four themes central to the organization of LTC in Europe: the characteristics and the changing demands of LTC recipients; the organization of informal care; the organization of public (statutory) support; and the impacts of the various “care regimes” on users and their informal carers.
Purpose: To explore the health and social care needs of Somali refugees with visual impairment (VIP). Design: We conducted a three-phased focused ethnography in collaboration with the Horn of Africa Blind Society (HABS) through all stages from research design to findings dissemination. Method: Engaging in participatory research, HABS members (n = 26), service providers (n = 10), and two Somali community groups (n = 8 and n = 7) whose members were sighted (Phase 1) took part in four focus group interviews. Phases 2 and 3 consisted of interviews with Somali refugees with VIP (n = 32) and their informal carers (n = 5). We used framework data analysis methodology. Findings: Four major themes emerged: (1) sociocultural perceptions of blindness and visual impairment, (2) access to services, (3) isolation and insecurity, and (4) mobility. Conclusion: Somali people with VIP experience profound unmet social and health care needs related largely to social support, awareness of mobility options, and the stigmatization of visual impairment. Appropriate community outreach may improve access to services and quality of life for Somali people with VIP. Tailored information is needed to increase awareness of mobility and security services. Significant considerations exist when planning discharge from acute care settings to ensure continuity of support.
Differences in perspective between clients, carers and practitioners are familiar from the literature. Findings from two research projects are reported here, which identify mismatched perspectives and appear to question the foundations on which community care policy and practice rest. The article discusses features of the policy and practice context that contribute to the likelihood of divergent views about need and appropriate or effective service provision within community care. In concluding with a review of the modernising agenda and the legal mandate, it questions whether a closer alignment between client, carer and professional perspectives can be achieved.
Background: Despite growing evidence that many people with dementia want to know their diagnosis, there is wide variation in attitudes of professionals towards disclosure. The disclosure of the diagnosis of dementia is increasingly recognised as being a process rather than a one-off behaviour. However, the different behaviours that contribute to this process have not been comprehensively defined. No intervention studies to improve diagnostic disclosure in dementia have been reported to date. As part of a larger study to develop an intervention to promote appropriate disclosure, we sought to identify important disclosure behaviours and explore whether supplementing a literature review with other methods would result in the identification of new behaviours.
Methods: To identify a comprehensive list of behaviours in disclosure we conducted a literature review, interviewed people with dementia and informal carers, and used a consensus process involving health and social care professionals. Content analysis of the full list of behaviours was carried out.
Results: Interviews were conducted with four people with dementia and six informal carers. Eight health and social care professionals took part in the consensus panel. From the interviews, consensus panel and literature review 220 behaviours were elicited, with 109 behaviours over-lapping. The interviews and consensus panel elicited 27 behaviours supplementary to the review. Those from the interviews appeared to be self-evident but highlighted deficiencies in current practice and from the panel focused largely on balancing the needs of people with dementia and family members. Behaviours were grouped into eight categories: preparing for disclosure; integrating family members; exploring the patient's perspective; disclosing the diagnosis; responding to patient reactions; focusing on quality of life and well-being; planning for the future; and communicating effectively.
Conclusion: This exercise has highlighted the complexity of the process of disclosing a diagnosis of dementia in an appropriate manner. It confirms that many of the behaviours identified in the literature (often based on professional opinion rather than empirical evidence) also resonate with people with dementia and informal carers. The presence of contradictory behaviours emphasises the need to tailor the process of disclosure to individual patients and carers. Our combined methods may be relevant to other efforts to identify and define complex clinical practices for further study.
Overall life expectancy for women with intellectual disabilities (ID) is now significantly extended, and many will live long enough to experience menopause. Little is known about how carers support women with ID through this important stage in their lives. This study investigated carer knowledge of how menopause affects women with ID under their care and how they may help them to cope with it. One-to-one interviews were undertaken with 69 carers (7 male/62 female) from a range of backgrounds, all with current responsibility for the care of one or more pre-, peri-, and/or postmenopausal women with ID. Carers reported difficulty in disentangling the psychological and physical consequences of the menopause from behaviors and symptoms arising from other causes. There was general recognition of the transitional importance of menopause and a widespread acknowledgment of the resilience that many women with ID show in coping with it. However, carers emphasized the need for health resources to be better tailored to the women's needs and for more relevant health education training for staff. The authors conclude that additional and new demands are placed on service provision as women with ID live longer. An increased awareness of health issues relating to menopause is needed, as are more appropriate and readily available relevant health education materials for women with ID in middle age.
Background : Carers of people with a severe mental illness often experience health and social problems themselves. In the UK, carers now have a statutory right to an assessment of their needs. Aim : to develop a brief instrument to identify and measure the experience of those caring for people with a severe mental illness across the range of domains that the carers themselves consider important. Method : potential domains were identified from published and 'grey' literature and refined through consultation with carers. Pilots and field trials of the resulting draft instrument involved a total of 412 carers. Results : a self-rated, 13-item questionnaire. Principal components analysis yielded factors relating to impact of caring and the quality of support provided for carers. Test-retest reliabilities for all items were moderately good or better. The great majority of 75 carers, who gave structured feedback, found they could follow the instructions for the instrument and 90% thought the length was 'about right'. Conclusions : CUES-C could be used as part of the carers' assessment. The instrument does cover the domains that carers value, is acceptable to carers and has reasonable test-retest reliability.
Drawing on recent quantitative and qualitative research, we consider lessons of the Scottish policy of free personal care for older people. The policy is embedded in political debates about devolution and interacts with various changing policies on care and support for older people. Evaluation is complicated by these interactions and by gaps in relevant data, especially concerning costs. Operationally, policy implementation has presented varying difficulties for local authorities. For clients and informal carers it remains popular, but is part of a service-led model of provision which does not reflect their own views of their care and support needs. Adapted from the source document.
This paper is based on a study of the experiences of people identified as 'young carers', commissioned by the National Assembly for Wales as part of a wider review of carers' needs and services. Following a brief review of some of the previous research in this area, the paper reports key findings of the research, using the words of children and young people as much as possible. It then goes on to explore some of the wider implications of this and other research for the identification and support of 'young carers' and their families, and for the understanding of the needs and wishes of children and young people so defined. The paper concludes with an alternative definition of a 'young carer' and with some recommendations for professional practice, suggesting that the role of social work is crucial in this area of service.
Background: Little is known about the time spent on specific health related activities by older adult informal carers who assist people with chronic illness. Research has not yet addressed the association between carer health status and their care demands. Such information could inform policy and health system efforts to manage chronic illness.
Methods: We conducted an Australia wide survey using recall questionnaires to record time use. The study asked how much time is spent on “most days” for the most common activities like taking medication, self-treatment and testing, and how much time in the last month on less common activities like attending a physician or shopping associated with health needs. The survey was mailed to 5,000 members of National Seniors Australia; 2,500 registrants on the National Diabetes Services Scheme; and 3,100 members of the Australian Lung Foundation. A total of 2519 people responded, including 313 people who identified as informal carers. Statistical analysis was undertaken using Stata 11. Standard errors and confidence intervals were derived using bootstrapping techniques within Stata 11.
Results: Most carers (96.2%) had chronic illness themselves, and those with greater numbers of chronic illnesses were those who faced the greatest overall time demands. The top decile of carers devoted between 8.5 and 10 hours a day to personal and caring health related activities. Informal carers with chronic illness spent more time managing their own health than people with chronic illness who were not informal carers. These carers spent more time on caring for others than on caring for their own health. High levels of caring responsibility were associated with poorer reported carer health.
Conclusions: Policy and health care services will need to adapt to recognise and reduce the time burden on carers who themselves have chronic illness. More carefully targeted investment in the social infrastructure of formal care would free up carers for other activities (including their own care) and holds the potential to improve the quality of life as well as the health outcomes of this population.
Researchers and practitioners are increasingly aware of the importance of the information needs of informal carers. However, little research has investigated their information needs comprehensively within the lived experience of being an informal carer. This paper presents a taxonomy of information needs of informal carers that assists in understanding their information needs more fully. This taxonomy divides information needs of informal carers into four major conceptual categories: (i) information needs related to the persons needing care, (ii) information needs related to the informal carers themselves, (iii) information needs related to the interaction between the persons needing care and informal carers; and (iv) information needs related to the interaction between informal carers and other parties. The usefulness of this taxonomy is demonstrated empirically using the results of eight case studies of carers of children with Type 1 diabetes. Evidence is provided to show how this taxonomy gives a multi-dimensional account of the information needs of informal carers. These results are important for those who work with such carers and for those who are concerned with addressing the information needs of informal carers in other healthcare contexts.
This paper describes a series of practice and service development initiatives to incorporate the family-inclusive approach into the newly established Early Intervention in Psychosis Service in Berkshire, England. Following a local study on carers' experiences and needs from those who cared for a young adult with a first-episode psychosis (FEP), a series of flexible services for this group of carers has been developed incorporating the much-researched psycho-educational family interventions. The findings of our local phenomenological study on the carers for young adults with FEP clearly specified the unique needs of this group of carers and that well-established approaches in family work and carers support facilities may have to be adapted to meet such needs. This paper reports the service development process through which a series of specially designed carers' services were set up for carers caring for a young adult with FEP. These services were developed to address carers' needs for knowledge, skills and support to cope with their caring roles and situation, from the stressful beginning of a potentially long caring journey.
Aims and objectives To explore the perceived caring needs in patient-partner dyads affected by heart failure to develop an understanding of potential areas of support. Background Being affected by heart failure has a great impact on both the patient and the partner but until now contemporary care has remained patient focused. Design A qualitative study design was used. Methods Eight focus group interviews were performed, which included nineteen patients diagnosed with heart failure and their cohabiting partner. Patients were aged between 55-89 years and partners' ages ranged from 48-87 years. Data were analysed using qualitative content analyses. Results The dyads perceived that caring needs could be summarised in two themes ‘Dyads perceive a need for continuous guidance through the different phases of the illness trajectory’ and ‘Dyads perceive a need to share burden and support with each other and others’. The dyads described a need to learn more about heart failure to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital, and having someone who cared about the well-being of the partners was perceived as comforting. Both the patient and the partner need to be present at the clinic visits. Receiving the same information and being able to ask questions reduce insecurity. Meeting others in the same situation and sharing the burden in group sessions were proposed as an opportunity to support each other and others. Conclusions There is a need to improve education and support for patient–partner dyads affected by heart failure. Relevance to clinical practice The result shows the importance to provide continuous healthcare contacts throughout the illness trajectory. Furthermore, partners should be included at follow-up, and support groups should be organised so that dyads can meet and support each other.
Caring for an ill or disabled relative is a life experience shared by many women. Based on data from a representative sample of women in Israel, this study examined the demographic, employment, and health characteristics of women caregivers, focusing on the extent of care provided and its effect on the caregiver's physical and mental health. Using the conceptual framework of caregiving-related stress, we compared women who care for a parent, and women who care for another relative. The study found more instrumental difficulties, which lead to greater burden, among women who care for a disabled relative who is not a parent. Furthermore, larger proportions of women caring for a disabled relative who is not a parent report depressive mood symptoms, poor health status, and the need for psychological counseling. The findings suggest that formal service providers, chiefly social workers, may better support women caregivers once they are aware of the needs arising from disparate contexts of care.
The aim of this report is to identify patterns in the utilisation of formal and informal long-term care (LTC) across European countries and discuss possible determinants of demand for different types of care. It addresses specific research questions on the volume of different types of care and the conditions under which care is provided. The latter include demographic factors, especially population ageing, health status and the limitations caused by poor health, family settings and social networking. The analysis indicates substantial differences in the receipt of LTC across European countries, depending on traditions and social protection models, which determine both the availability of institutional care and the provision of informal care. In countries with a Scandinavian approach, where the levels of state responsibility and provision of institutional care are high, informal care is less prominent and is mostly provided on an irregular basis by caregivers outside the family. As needs for care increase, formal settings are more common. Countries in the Continental Europe group are less uniform, with a high share of individuals using formal settings of care, but also combining formal and informal care. In Mediterranean countries, the provision of informal care, including personal care, plays a much greater role than formal LTC.
Objectives: To investigate the determinants of satisfaction in caregiving and to compare satisfaction in care-giving amongst carers of demented and non-demented mentally infirm elders; and, assess carer attitudes and concerns, and their implications on care in the community.; Design: Cross-sectional study of informal carers of the elderly referred to a psychogeriatric service, using a questionnaire investigating carer satisfaction (CASI), care-recipient dependency needs, carer burden (CADI), carer concerns and attitudes in relation to caregiving, and the 28-item GHQ.; Setting: Lancashire communities of Fleetwood, Thornton-Cleveleys, Poulton-Le-Fylde, and Over-Wyre.; Results: Carers achieved significant degrees of satisfaction in their role as care-givers; there was no significant difference in the degree of satisfaction gained by carers of the demented and non-demented. The mean CASI score, for carers of the demented and non-demented was 23(5.5) and 24.4 (5.7) respectively (mean difference -2.9; CI -4.6, 0.1; p=0.058). Dissatisfaction in care giving was determined by total burden (CADI) scores, and younger carer age. Emotional distress in carers was weakly inversely correlated with CASI scores (r=-0.21, p=0.042). Concerns expressed by carers, included desire for information on care recipient disability (39.5%) and fear of nursing/residential home placements (43%). Most carers had a generally positive attitude to care giving, in spite of significant degrees of burden to which they were subjected. Conclusions: Carer-related factors, particularly younger age, rather than dependency factors, were determinant of care giving satisfaction. Greater involvement of older persons in care giving should be encouraged, with younger persons assisting if care giving becomes overbearing. Carers require education on care-recipient disabilities and the benefits of care in formal care institutions.
This chapter reviews a community based action research project undertaken within the Older People's Directorate of Shropshire's Mental Health NHS Trust. The project investigated how statutory bodies might best facilitate the involvement of carers. The work focused on carers of mentally infirm older people and the carers of dementia sufferers. The research sought to explore, and find solutions to, known barriers to participation such as poor communication routes, paternalistic organisation cultures and a non-homogenous user group. It was conducted in three phases. Phase one evaluated existing provision; phase two comprised a series of psycho-educational sessions with carers. The final phase examined strategies for reducing delays between diagnosis and referral. Three main lessons emerged from the project: (1) the frequently divergent needs of carers and care agencies (2) the alienating effect of professional jargon (3) the importance of setting realistic expectations.
Background Few studies have investigated wellbeing and burden in carers of people with severe multiple sclerosis (PwSMS). Objectives To assess the impact of providing care to PwSMS, and explore variables associated with perceived carer burden. Methods Cross-sectional assessment of health-related quality of life (HRQOL), mood symptoms (Hospital Anxiety and Depression Scale, HADS), and perceived carer burden (22-item Zarit Burden Interview, ZBI) in 78 PwSMS carers. Multivariate linear regression explored carer and PwSMS factors associated with ZBI score. Results Carers (61% women, mean age 60.2years, 53% spouse/partner) had significantly lower HRQOL (all SF-36 scales) than the norm, especially for Role Limitation Emotional/Physical, and Emotional Wellbeing. Sixty-eight percent had pathologic (≥8) Anxiety, and 44% had pathologic Depression scores on HADS. Nonetheless, perceived carer burden was only moderate (mean ZBI score 35.6, SD 14.3). High carer anxiety (p < 0.0001), low household income (p = 0.009), and living with the PwSMS (p = 0.02) were independent predictors of perceived burden. Conclusions Caring for PwSMS has a detrimental effect on HRQOL and psychological wellbeing. High carer anxiety, low economic status, and living in predict higher burden. It is crucial to recognize PwSMS carers as full partners in the provision of care, and to respond to their own needs.
Purpose: Family caregivers of people with advanced cancer can provide extensive support to the patient. However, the role is not well defined and their experiences are poorly understood. This study aimed to explore how caregivers view their role and the impact of their caregiving.
Methods: A symbolic interactionist framework guided the in-depth individual interviews and grounded theory methodology was used to analyse the data. A total of 17 interviews were conducted: 13 with active caregivers and 4 with bereaved caregivers.
Results: Three dominant codes are presented. Caregivers lacked role recognition, as they struggled to recognise their role existed, even though they took on extensive and challenging tasks. Caregivers reported substantial loss or changes to their self-identity: with some caregivers reporting not being able to stop thinking about caregiving and others having difficulty answering questions about themselves. Caregivers also demonstrated difficulty in taking a break: active caregivers did not consider taking a break, whereas bereaved caregivers retrospectively admitted needing a break but reported an inability to take one.
Conclusions: Caregiving is complex and extensive. People who care for those with advanced cancer are in need of intervention to provide support and assistance to them in their role. However, this needs to be structured with consideration for how caregivers view their role.
Researchers have identified the needs of family members of critically ill adults, explored their experiences, and investigated interventions. To address a gap in the theoretical knowledge about how nurses help these individual, the authors developed a grounded theory of nursing support from the perspective of family members. Results indicated that family members were initiated into a cycle of Work to meet perceived responsibilities to Get Through the experience. Supportive nurses engaged in the process of Lightening Our Load to mitigate the negative effects of the critical care experience on family members by Engaging With Us, Sustaining Us, and Disengaging From Us. No previous research has yet identified the Work of these family members, the steps they take to gain nurses' respect, and the significance to them of nurses' Welcoming us and Saying goodbye. This theory extends the understanding of nursing support beyond current knowledge of family needs, caring, comfort, supportive care, and social support.
Health professionals such as nurses, physiotherapists and occupational therapists provide a wealth of support in the community to patients and their carers receiving palliative care. Moving and handling is one such support that needs careful consideration and assessment including risk, by appropriately qualified professionals. A combination of skills are required as well as knowledge of up to date equipment to assist the health professional in deciding how to formulate safe moving and handling interventions in a timely way. Patients with palliative care needs and their carers should be given the appropriate care and support necessary using a holistic, flexible and patient-centred approach to service delivery.
Stroke is a condition that affects both patients and family members who provide care and support. Because stroke is an unexpected traumatic event that suddenly forces family members into a caregiving role, caregivers often experience an overwhelming sense of burden, depression, and isolation; a decline in physical and mental health; and reduced quality of life. Caregiver health is inextricably linked to a stroke survivor's physical, cognitive, and psychological recovery. Evidence suggests that informational interventions alone are not as effective in meeting the complex needs of stroke caregivers as interventions that combine information with other support services. This article discusses issues related to stroke caregiving and proposes comprehensive strategies designed to meet the poststroke recovery needs of both patients and caregivers. Suggested strategies include a comprehensive assessment specific to caregiver needs, skills, and resources and case management services designed to provide continuity of care across the stroke-recovery trajectory.
The Care Bill was introduced into the House of Lords on 9 May 2013, received its Third Reading on 29 October 2013 and then proceeded to the House of Commons where it received its Second Reading on 16 December 2013. Commons’ Committee stage began on 9 January 2014 and is due to end on 4 February. This Report examines the most significant human rights issues in the Bill.
In this report, the Joint Committee on Human Rights examines the most significant human rights issues in the Care Bill, which must ensure that all providers of publicly arranged or paid-for social care services are bound by the Human Rights Act. The Bill provides an opportunity to fill the gaps in human rights protection for all those receiving publicly arranged or paid-for care, including in their own home and in residential care homes under arrangements made other than under the National Assistance Act 1948. The opportunity to legislate to this effect must not be missed by Parliament. The Committee recommends an amendment to the Bill which would close this significant gap in human rights protection for people receiving publicly arranged or paid-for care. Amendments should be made to either the Care Bill or the Children and Families Bill (debated in the House of Lords on 27 January 2014), to give parent carers of disabled children equivalent rights to a needs assessment for support.
Several recent articles have pointed out that caregivers of patients with frontotemporal dementia (FTD) need counselling and support. To date, however, no support groups have been provided other than those available to caregivers of patients with Alzheimer's disease (AD). At our outpatient unit for cognitive disorders we initiated a specific support group for caregivers of patients with FTD. This pilot project had four objectives: 1) to provide information, advice and support to caregivers, 2) to learn more about the specific problems and needs of family carers of patients with FTD and to explore the differences to caregiver burden in AD, 3) to encourage mutual support and development of coping strategies, 4) to evaluate the intervention using a questionnaire completed by the caregiver. Eight spouse caregivers of patients diagnosed with frontotemporal dementia (FTD) participated in special support groups. Seven weekly sessions of 90 minutes' duration were held. To evaluate the program participants were asked to complete a questionnaire about their satisfaction with the support group immediately after the final session. Six months after the intervention they received a questionnaire by mail gathering information on coping efficacy. It became obvious that many problems faced by caregivers of patients with FTD are different from those encountered in AD. During group meetings participants were encouraged to express their own needs and to deal with painful emotions, including aggression, anger, mourning and guilt. Caregivers felt relieved by sharing their problems with others. They were able to learn from each other and to share coping strategies. The group also helped to establish new social relations contacts and even friendships. The participants rated the program as useful and said that benefits were sustained even six months after termination. We conclude from these initial observations that caregiver support groups are a useful component in the management of patients with FTD. Such groups should be tailored to the specific problems and needs of these caregivers. To maintain benefits, self-help groups are recommended even in the absence of professional input.
The article presents a study that examined the experiences, needs and service responses to the 290,000 young adult caregivers aged 16-24 in Great Britain today. It says that the research included a literature review, secondary analysis of 2001 Census data, a survey of 25 young caregivers projects, a survey of 13 adult carers services, focus groups with 29 young caregivers aged 16 and 17, discussions with staff at focus group sites, and in-depth interviews with 25 young adult caregivers aged 18-24 across the country.
Summary: Social work practice is increasingly concerned with support not just for service users but also for unpaid carers. A key aspect of practice is the assessment of carers’ needs. The Government has recently passed legislation that will widen eligibility for carers’ assessments and remove the requirement that carers must be providing a substantial amount of care on a regular basis. This article examines which carers are currently ‘visible’ or known to councils and which are not, and uses the results to examine the likely effects of the new legislation. In order to identify the characteristics of carers known to councils, the article uses large-scale surveys, comparing the 2009/10 Personal Social Services Survey of Adult Carers in England and the 2009/10 Survey of Carers in Households in England.
Findings: Carers who are known to councils provide extremely long hours of care. Among carers providing substantial care who are known to councils, the majority care for 100 or more hours a week. The focus of councils on carers providing long hours of care is associated with a number of other carer characteristics, such as poor health.
Applications: Councils' emphasis on the most intense carers is unlikely to be attributable solely to the current legislation. Therefore, dropping the substantial and regular clauses alone will not necessarily broaden access to carers' assessments and, in order to achieve this, considerable new resources may be needed. How far these resources are available will determine the extent to which practitioners can broaden access to carers' assessments.
This paper explores the daily experiences and occupational needs of family carers of people who were dying, with particular reference to their daily routines and ability to undertake other varied activities during the period of care. The impact of the caring experience on these occupations was then examined to determine how, and if, these occupational needs were addressed in the community using potential and available services. An exploratory approach using grounded theory was employed to examine these experiences. Participants were recruited from metropolitan (n = 10) and rural (n = 4) locations across Western Australia between February and June 2009, using a purposive sampling method. A semi-structured interview guide was developed following consultation with the literature, expert opinion and piloting. Interviews were conducted in participants’ homes and questions were asked about their experiences as a carer including routines, engagement in usual activities and the impact of the caring role on their daily life during and after the period of care. Each interview was transcribed verbatim and analysed to determine potential themes. Two important themes were identified: (1) Carers experienced disengagement and deprivation from their usual occupations during and after the period of care; and (2) Participants described significant disempowerment in their role as carer. Carers are ‘doubly disadvantaged’ as a result of their caring role; they are unable to participate in their usual occupations and they are not recognised for their contributions as carers. Carers experienced disengagement and deprivation from their usual occupations, contributing to physical, psychological and emotional difficulties and this may result in long term consequences for health and well-being. In addition, the current services and support available for carers in the community are deemed inadequate; placing further stress on a health care system which needs to cope with increasing demands as a result of the ageing population in Australia.
I argue that it is appropriate for adult recipients of personal care to feel and express gratitude whenever care providers are inspired partly by benevolence, and deliver a real benefit in a manner that conveys respect for the recipient. My focus on gratitude is consistent with important aspects of feminist ethics of care, including its attention to the particularities and vulnerabilities of caregivers and care recipients, and its concern with how relations of care are shaped by social hierarchies and public institutions. In addition, it goes beyond the current preoccupations of care ethicists both by introducing gratitude as an important aspect of morally valuable relations of care and by stressing the significance of attending not only to the needs but also the capacities of recipients of care.
Caring in Later Life is a review of the needs and roles of older carers (Milne et al, 2001). It brings together a wide‐ranging review of academic and policy literature with an original meta‐analysis of the 1995 General Household Survey (OPCS, 1995). This paper focuses on the findings of the GHS analysis. The picture of older carers that emerges is significantly different from that of carers overall.It is clear that older carers constitute a large and growing number of the carers and represent an increasingly large proportion of the total number of UK carers. They can be distinguished from other groups of carers in a number of ways: older carers are more likely to live with the person they care for, caring is likely to take place within the context of a long term relationship, dementia is a dominant feature and carers are more likely to be involved in intimate and personal care. Many also have health problems of their own. The analysis confirms a distinction between older carers who offer support on a co‐resident basis and those who are extra resident. There is clearly a high level of devotion to caring amongst many co‐resident carers, with many providing intensive care over long periods of time with little or no support from services. Most of these carers are spouses. The authors suggest that more should and can be done by policy and services to improve the health and quality of life of older carers.
This Service Framework for Older People is one of a range of Service Frameworks which set out standards for health and social care to be used by patients, service users, carers and their wider families to help them understand the standard of care they can expect to receive in Northern Ireland. It sets standards in relation to people over 65 whilst taking account of the needs of those over 50, where appropriate, particularly in relation to preventative measures. The Framework sets standards in relation to: Person-centred Care; Health and Social Wellbeing Improvement; Safeguarding; Carers; Conditions more Common in Older People; Medicines Management and Transitions of Care.
Family caregivers are crucial for supporting home death. We reviewed published qualitative research on home-based family caregiving at end of life (1998—2008), synthesizing key findings and identifying gaps where additional research is needed. Multiple databases were searched and abstracts reviewed for a focus on family caregiving and palliative care; full articles were reviewed to extract data for this review. In total, 105 articles were included. Findings are presented in the following areas: the caregiving experience and contextual features; supporting family caregivers at end of life; caregiving roles and decision-making; and rewards, meaning and coping. We noted a lack of definitional clarity; a reliance on interview methods and descriptive, thematic analyses, and a relative lack of diversity of patient conditions. Research needs are identified in several areas, including the bereavement experience, caregiver ambivalence, access to services, caregiver meaning-making, and relational and contextual influences on family caregiving at end of life.
Increasingly, Australian government policy advances an expectation that consumer and carer participation will be present in all aspects of mental health service delivery. A review of the literature suggests that consumers and carers actively seek the opportunity to participate but are frequently hampered by barriers. However, government policy documents tend to discuss consumers and carers with regards to participation as though their needs and desires are essentially similar. This paper presents the findings of a qualitative research project involving in-depth interviews with carers and mental health nurses. The issue of conflict between the issues for consumers and carers emerged as a major theme. This issue is explored and discussed in light of the goals of current mental health policy. It is concluded that conflicting agendas are apparent and must be addressed if genuine participation in service delivery is possible for both consumers and carers.
This study describes informal caregivers' unmet needs for community services and investigates the association between unmet needs and caregiving strain. The data used in this study were extracted from the Family Caregiving in the U.S. Survey and included 463 caregivers caring for an older adult who received community services. Among these caregivers, over one-third reported that the community services used by the care receivers did not meet their needs. Findings indicated informal caregivers who reported unmet needs were more likely to experience higher levels of emotional strain than those who did not report unmet needs after potential confounding factors were controlled for. However, the relationship between unmet needs and physical strain was marginally significant.
Changes in the living circumstances of people with learning disabilities have seen responsibility for their health become the provenance of paid-and family-carers. Thirteen semi-structured interviews were conducted with three family-carers and ten paid-carers. Findings revealed that the role of these carers was undefined, leading to difficulty in deciphering who was responsible for the health care of the people they supported, with some paid-carers claiming that health was outwith their remit. The difficulty of monitoring health problems of people with learning disabilities was noted, and carers disclosed skills and techniques that they used to explain health messages to individuals. If the health needs of people with learning disabilities are to be met, then a more consistent approach to health care within the community setting is needed, especially in terms of the remit of paid-and family-carers and with the integration of health and social services.
The author highlights the plight of young carers whose support needs are often overlooked and whose hard work is seldom recognised. Cites four references.
Objective: To describe the number and types of problems mentioned by successfully contacted home-dwelling stroke patients and their carers, and nursing interventions applied.
Design: In this multicentre quantitative study in the Netherlands, stroke patients and carers received outreach nurse support consisting of three telephone contacts and one home visit within six months after discharge. Standardized checklists describing a wide range of potential problems were used to record problems and interventions.
Subjects: A sample of 173 patients admitted for a stroke and discharged home, and 148 carers.
Results: Of 173 patients, 166 (96%) were contacted and 162 mentioned in total 1419 problems. Physical problems were mentioned most frequently (92%; 153/166), followed by emotional problems (60%; 99/166). The proportion of patients with problems decreased from 94% (142/151) at the first contact to 74% (108/145) at the last contact. Of 148 carers, 118 (80%) were contacted and 84 mentioned 266 problems. ‘Psychosocial burden’ was mentioned most frequently (45%; 53/118). Proportions of carers with problems were 56% (54/96) at the first contact and 37% (26/70) at the last contact. Of 864 interventions to patients, stroke nurses most frequently applied ‘supportive listening’ (55%; 471/864) and ‘reassuring or encouraging’ (12%; 107/864), and of 258 interventions to carers 45% (115/258) were ‘supportive listening’ and 17% (43/258) ‘informing’.
Conclusions: Almost all patients and most carers were contacted. Though the number of needs decreased during the consecutive contacts, many patients and carers still raised problems during the last contact. Nurses most frequently applied the intervention ‘supportive listening’.
Carers with learning disabilities are a hidden group within the population, and remain a largely neglected group. The article describes a campaign called ‘Who Cares for Us?' which is working with government and social services to make sure carers with learning disabilities are included in the new carers strategies. The Valuing People Now formed a National Network for Carers with Learning Disabilities, building on the work of 'Who Cares for Us'. The article acknowledges that more needs to be done, but ultimately supporting carers is an invaluable process, both for the community and the economy.
In Australia, more than 346,000 individuals who experience a stroke return to living in their homes with varying degrees of disability. They rely on emotional and physical support from informal carers, typically family members. Informal carers have an indispensable role in patient care poststroke, and the ability of carers to manage this role effectively is crucial for stroke survivors to be able to return home. The aim of this study was to examine the impact of the caring role on carers of stroke survivors, particularly the services provided and the levels of depression and well-being experienced. The study used a longitudinal design incorporating survey methods. Stroke survivors were assessed for functional ability, quality of life, and depression using three assessment tools: the Stroke Impact Scale, World Health Organization Quality of Life-BREF scale, and Zung Self-Rating Depression Scale. A total of 26 people were surveyed: 13 stroke survivors and their 13 carers. Carer knowledge of stroke support services was also explored. Information was collected by using survey methods and structured interviews at 3 weeks and at 3 months postdischarge. The main finding was that depression scores for carers and stroke survivors were below Australian norms at both assessment time points. The major concern identified by carers was poor follow-up procedures for initiating rehabilitation in the home. This study highlighted that a lack of appropriate discharge planning, in conjunction with early discharge of stroke survivors, can have an impact on the rehabilitation process and place increased and unrealistic demands on carers.
Informal carers of cancer patients have high rates of burden, stress, anxiety and unmet needs; yet, some describe caregiving as fulfilling. Building on the work of Thomas and colleagues, this study takes a sociology of emotions approach to understanding variations in carers of cancer patients' emotional experiences, using interview data with 32 carers of a spouse with cancer. Analysis indicates that a clearly terminal (negative) prognosis facilitates clear priorities, unambiguous emotion management and improved social bonds. A more ambiguous (positive) prognosis, that includes a greater chance of survival, fosters role conflict, clashing feeling rules and ongoing guilt within spousal carers. This study highlights the importance of a prognosis to emotion management, underscoring a phenomenon that is likely to grow as survival rates continue to improve and explaining some of the variation in carers' experiences.
This article describes a study in which a systematic classification of cancer patients was produced on the basis of their needs. A series of 380 cancer patients from four hospitals in the North West of England responded to a self-completion questionnaire that included a 48-item inventory of psychosocial needs covering seven needs domains (information, health professionals, emotional and spiritual, identity, practical, support, and child care). Latent class analysis was used to identify differing patterns of psychosocial need. Four patterns of need were identified. The groups differed in both quantityand qualityof patients' expressed needs. Group A had a high level of expressed needs “across the board,” whereas Group D had a low level of expressed needs “across the board.” Group B had high levels of expressed needs in all except the emotional, spiritual, identity, and practical domains, and Group C had low levels of expressed needs in all but the information and health professionals domains. Because the four groups differed by demographic and socioeconomic characteristics, there is scope for developing risk scores to predict these patterns of psychosocial needs in patients with cancer. The dangers and limitations of this approach are discussed.
Many people with dementia are cared for in their homes by family caregivers. As the dementia progresses, admission of the family member to a nursing home becomes inevitable. The aim of this meta-ethnographic study was to describe caregivers’ experiences of relinquishing the care of a family member with dementia to a nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo, between the years 1992 and 2012, was performed, and 10 qualitative articles, based on 180 family caregivers’ experiences, were included. The family caregivers’ described their experiences as a process that went from being responsible for the decision, through living with the decision, adjusting to a new caring role and having changed relationships. They felt unprepared and lonely with these changes. They experienced loss, guilt and shame, but also feelings of relief. Their roles in the nursing home environment were to make sure that the individual needs of the person with dementia were respected and to monitor the quality of care. They wished to maintain their relationship with the person with dementia and to establish meaningful relationships with caring staff. The process of relinquishing care is similar to a crisis process, which starts with a turning point, followed by a coping face and finally the outcome of the process. The adaption to the new situation can be facilitated if the family caregivers are recognised as partners in the care of the person with dementia. The family caregivers’ unique knowledge of their relatives’ previous life story should be acknowledged in both care planning and daily care. Welcoming family caregivers to regular meetings with staff can contribute to increase the feeling of partnership. Offering staff clinical supervision could be one way of preparing them to deal with the emotional strain reported by family caregivers.
Background This survey study aims to examine the prevalence and factors associated with depressive symptoms among primary older female family carers of adults with intellectual disabilities (ID).
Method In total, 350 female family carers aged 55 and older took part and completed the interview in their homes. The survey package contained standardised scales to assess carer self-reported depressive symptoms, social support, caregiving burden and disease and health, as well as adult and carer sociodemographic information. Multiple linear regressions were used to identify the factors associated with high depressive symptoms in carers.
Results Between 64% and 72% of these carers were classified as having high depressive symptoms. The factors associated with carer self-reported depressive symptoms were carer physical health, social support and caregiving burden; overall, the carer self-reported physical health was a stronger factor associated with depressive symptoms than their physical disease status. The level of the adult with ID's behavioural functioning and the carer age, marital status, employment status, education level and the family income level were not significantly associated with carer depressive symptoms.
Conclusions The factors identified in this study as correlating with self-reported depressive symptoms suggest that researchers and mental health professionals should collaborate to help improve the physical health and social support networks of the most vulnerable older female family carers. This should reduce depressive symptoms directly among this high-risk group.
Background: Relatives of people with psychosis experience high levels of distress. Interventions are needed which can reduce distress and are widely available.
Aims: This study presents the views of relatives on how to design a supported self-management intervention for relatives.
Method: Four focus groups were carried out and relatives were asked for their views on the content, format, support required, likely barriers and potential impact on the outcome of a self-management toolkit.
Results: Relatives were generally very positive about the development of a toolkit. Relatives had clear ideas about the design, emphasising particularly that it needs to be comprehensive, modular, supported and able to translate general information into the specific detail they require for their family member. Many of the ideas informed the development of Relatives Education And Coping Toolkit. Some suggestions, such as multiple modes of delivery, earlier access to the toolkit in primary care and peer support from other relatives, were not possible in this study but should be considered for future development.
Conclusions: Relatives supported the development of a supported self-management toolkit intervention. They also emphasised the importance of offering such interventions alongside other valued aspects of services including face-to-face contact with clinicians, peer support from other relatives and crisis support.
Social workers have made a significant contribution to the development and delivery of palliative care. Both palliative care and social work are rapidly evolving but, given their changing contexts and increasing workloads, can they sustain compatibility? Advances in treatment of life-threatening illness mean that people live longer in a period of palliative care. Social work has undergone radical change in the wake of the 1990 NHS and Community Care Act and subsequent local-authority modernizations, with social workers now given the role of care managers, rather than the more traditional ‘casework’ or therapeutic role. This paper aims to explore the current and potential role of the social worker in palliative care for people with cancer and other prolonged life-threatening illness. It draws upon evidence from a prospective qualitative, patient-centred research study, which detailed the experiences of forty people with lung cancer and advanced cardiac failure, and their personal and professional carers (Murray et al., 2002). A total of two hundred and nineteen qualitative interviews were carried out.
We found that social workers were conspicuous by their absence from the lives of these forty vulnerable adults, who were living and dying in the community with many unmet needs which, potentially, could be met by social-work input. The study highlights six areas of concern in which social-work assessment and intervention could have impacted on dying patients’ quality of life and that of their carers: loss and dependency, family-centred issues, carers’ needs, practical tasks, emotional and spiritual struggles, and finally, support needs of staff. These areas are outlined to explore the territory which a social worker might inhabit if resources and policies permitted.
This research provides a three-way perspective on the experiences & needs of children who are living with & caring for parents with severe & enduring mental illness. The views of children, parents & key workers were sought in order to provide deeper insight into the needs of families & the nature of interfamilial relationships, as well as the relationships between service users & providers. Child protection & medical research has long proposed a link between parental mental illness & the risk to children of abuse, neglect & developmental delay. The inevitability of risk associations is challenged by the research described here & outcomes for children of caring for parents with mental illness are discussed not simply in terms of risk to children but more broadly in respect of, for example, positive parent-child relationships. References. [Copyright 2006 John Wiley and Sons, Ltd.]
Requirements set out for the social work degree and post‐qualifying framework specify the involvement of service users and carers on a number of levels. Research indicates that service user and carer involvement can benefit students, professionals and service users and carers themselves. To keep up with demands placed on service users and carers by higher education institutions and other social work bodies, the issue of capacity needs to be addressed. This paper describes a programme (Getting Involved) designed by Skills for Care to build capacity to participate among service users and carers new to social work education. It describes the experience of piloting the programme in Dorset by a team at Bournemouth University consisting of service users and carers and staff from the Centre for Post‐Qualifying Social Work. Getting Involved is a welcome development and the outcomes of the pilot have been extremely positive for all involved. The process of undertaking and evaluating the pilot raised issues concerning setting up programmes, project management, service users and carers as co‐researchers and sustainability. These are discussed in terms of our experience and how they link with the literature. Lessons learnt and implications for similar work in the future are highlighted.
It would surprise many people to know that sight loss may be more common in people with dementia; the effect of these two conditions on people's lives had never previously been investigated until recently. Here, Vanessa Lawrence and Joanna Murray present the findings of their ground‐breaking research carried out with Professor Sube Banerjee and Dr Dominic Ffytche of King's College, London into how sight loss and dementia affects the lives of older people and their carers.
Objective: The need for information about the disease and coping with the consequences, as well as on available care and welfare services, is frequently unmet in people with dementia and their carers. To provide carers of community-dwelling people with dementia with tailored information, the DEMentia-specific dynamic interactive social chart (DEM-DISC) was developed. The impact on the daily life of people with dementia and their carers, the user friendliness and usefulness of a first prototype of DEM-DISC was evaluated.
Method: DEM-DISC was tested among informal carers in a pretest–posttest control group design. Fourteen informal carers could access DEM-DISC at home during a two month period. Fourteen controls did not have access to DEM-DISC. Data were collected by separate interviews with people with dementia and carers at pretest and posttest, by means of digital logging, short telephone interviews, and a bottleneck checklist during the intervention period.
Results: People with dementia and informal carers reported more met and less unmet needs after DEM-DISC use and carers in the experimental group reported higher levels of competence than controls. Although they were not explicitly satisfied with this first prototype of DEM-DISC, carers found DEM-DISC easy to learn and relatively user friendly. Carers acknowledged the system's benefits.
Conclusion: The positive effects might be caused by the systematic and tailored individual way of information provisioning by DEM-DISC. It would be worthwhile to continue to develop DEM-DISC and to conduct randomized trials on the impact on patients and carers as well as the impact on nursing home admission and healthcare expenditure.
Background: The European eHealthMonitor project (eHM) developed a user-sensitive and interactive web portal for dementia care: the eHM Dementia Portal (eHM-DP). It aims to provide targeted and personalized support for informal caregivers of people with dementia in a home-based care setting. The objective of the pilot study was to obtain feedback on the eHM-DP from two user perspectives (caregivers and medical professionals), focusing on caregiver empowerment, decision aid, and the perceived benefits of the eHM-DP.
Methods: The study on the eHM-DP was conducted from March 2014 to June 2014. The methodological approach followed a user-participatory design with a total number of 42 participants. The study included caregivers of people with dementia and medical professionals (MPs) from the metropolitan region of Erlangen-Nürnberg (Bavaria, Germany). Study participants were interviewed face-to-face with semi-structured, written interviews.
Results: Caregivers indicated a high degree of perceived support by the eHM-DP and of provided decision aid. In total, 89 % of caregivers and 54 % of MPs would use the eHM-DP if access were provided. The primary benefits participants perceived were the acquisition of individualized information, computerized interaction between caregivers and MPs, empowerment in health-related decisions and comprehensive insights into the progress of the disease. Major recommendations for improving the eHM-DP encompassed: an active search functionality based on predefined terms, the implementation of a chatroom for caregivers, an upload function and alerts for MPs, as well as the overall design.
Conclusions: Our study is the first to have provided new insights and results on an interactive and needs-oriented web portal, endeavouring towards empowerment and assistance in decision making for caregivers as well as MPs within the realm of caring for patients with dementia. The acceptance and willingness to use the eHM-DP emphasizes the potential of eHealth services for community-based dementia care settings.
This study aims to: estimate the costs borne by families caring for patients with variant Creutzfeldt-Jakob disease (vCJD); to contextualise results to recent initiative; and consider the methodological problems of estimating costs of care. Semi-structured interviews and a follow-up postal questionnaire, eliciting costs to families both before and after the patient's death, were carried out participants included 19 families of patients with vCJD. Cost profiles were constructed, detailing key time and financial costs associated with their relative's illness and death accursing to families. Main outcome measures included total, median and ranges of relevant cost elements. Sensitivity analyses, comparing high and low cost estimates, were undertaken. Concludes that the National Carers Strategy does not consider fully the needs of some groups of carers or the full range or magnitude of potential costs to families associated with caring.
Background: The end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.
Objective: The aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories.
Setting: England.
Participants: Thirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services.
Design and methods: This was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10.
Results: Transitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff.
Conclusions: Development of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions.
Aim. This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers.
Background. Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need.
Method. Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework.
Findings. Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases.
Conclusion. All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.
Services for people with learning difficulties are facing new challenges. These lie not only in the care of severely learning disabled clients, but also in the care of older people with a learning difficulty who develop dementia and support for their families, formal carers and friends.
Objective: To develop an intervention, using the first three phases of the Medical Research Council (MRC) framework for complex interventions, to facilitate coping skills in new carers of stroke patients.
Methods: In the preclinical (theoretical) phase, a theoretically based framework for a small group course for carers of people with stroke was developed. The intervention was grounded in a cognitive behavioural model and included carers' needs identified from a literature review. Phase I (modelling phase) comprised a qualitative study involving one-to-one semi-structured interviews with a purposive sample of informal carers of people with stroke. Following this, the intervention was modified. In phase II (exploratory phase), the modified intervention was delivered by a clinical psychologist and stroke nurse practitioner to five carers. Following postcourse interviews the course was further refined and delivered to seven new carers who subsequently completed a satisfaction questionnaire.
Results: Carers' needs identified from the literature included information provision; managing emotions; social support; health maintenance; and practical problem solving. Consultation with existing carers confirmed these as important issues with a strong emphasis on finding niches of control in life, becoming an expert carer, and dealing with emotional upheaval. Participants reported feeling more optimistic and empowered subsequent to the course.
Conclusions: The MRC framework provided a useful methodology for the development of a complex intervention. The course aimed to assist carers to regain control over aspects of their lives and manage their emotions. It was feasible to run and acceptable to carers; however a randomized controlled trial (RCT) is required to evaluate its effectiveness.
Support for unpaid carers has rightly become an important policy area in Scotland. In some ways, Scotland is ahead of other parts of the UK when it comes to developing services for carers. To build on this, the Scottish Executive undertook a project looking into the future needs of unpaid carers, and how services might need to change over the next 10 years. The aim was to create a picture of what services unpaid carers need, and how best to deliver these services so that they make a difference to people’s quality of life.
This briefing provides an overview of the research literature on the barriers currently facing black and minority ethnic (BME) people in accessing dementia care services. It also looks at some of the ways in which services can become better at responding to the needs of (BME) people in their local area. The briefing begins by outlining the main issues and why it is important to address existing barriers. It then summarises the findings from the research, which cover: prevention, early intervention and diagnosis; life history and dementia; awareness and stigma; improving access to information; carers; workforce development and training; specialist and generic services. Implications for the main stakeholders are provided. The briefing is based primarily on UK research.
Juggling work and care presents particular challenges to carers and employers. Employers are increasingly under pressure, both from within organizations and from recent government legislation and policy, to develop family-friendly policies to support informal carers in the workplace. Yet existing ‘family-friendly’ schemes and services are still primarily designed for working parents of young children and rarely address the needs of employees who care for older or disabled adults. This paper reports on a study which investigated how working carers and managers in two public sector organizations — a Social Services Department (SSD) and a National Health Service (NHS) Trust — combined their work and caring responsibilities. A multi-method approach was adopted consisting of five phases. First, a profile of the two organizations was established, followed by a short screening questionnaire to all employees to identify who was caring for an older adult over the age of 60. Third, a lengthier postal survey was sent to the 365 carers who had indicated a willingness to participate further. In the fourth and fifth phases, carers and managers were interviewed in depth about their experiences. This paper reports briefly on the survey, but then concentrates in particular on what was said in the interviews about what helps and hinders working carers of older adults. Despite the existence of policies to support carers, our findings suggest that these were far less important than informal support from colleagues and a sympathetic manager in the workplace. Commuting distance between work, home and the older person also posed difficulties for carers, along with inflexible schedules and work overload. Employers are urged to explore these issues further if they are serious about recruiting and retaining employees, and developing the work – life balance agenda to meet the needs of those caring for older and disabled adults.
Informal carers of home palliative care patients have high unmet needs. However, interventions for carers are few. This research-based short-term group intervention addresses the information and support needs of carers. Multiprofessional informal teaching is combined with peer support. The intervention was designed by integrating the findings from a qualitative study and the evidence on needs and interventions, in order to address the key issues of feasibility, acceptability, and accessibility. Qualitative data from attendees showed that identifying with other carers and validating feelings, asking questions of professionals, and providing each other with support and encouragement were valuable outcomes from the group.
Objective: To characterise the differences in caregiver distress between carers of people diagnosed with dementia with Lewy bodies (DLB) and people with Alzheimer's disease (AD), with a view to differentiating and improving support for caregivers. Methods: This study is a part of two larger Norwegian studies, DemVest (n = 265) and The Norwegian Dementia Register (n = 2220), with data from caregivers and people diagnosed with AD (n = 100) and DLB (n = 86) between 2005 and 2013. The average age was 74.9 years (SD = 7.8). Caregiver distress was rated by the Relative Stress Scale. Diagnosis of the person receiving care was based on a comprehensive standardised assessment program (International Classification of Diseases, Revision 10 or Diagnostic and Statistical Manual for Mental Disorders, fourth edition). Additional data collected from people receiving care were neuropsychiatric symptoms, comorbidity and activities of daily living (ADL) score. Linear regression analyses were applied, first unadjusted and then in stepwise-adjusts in addition to descriptive analyses. Results: Caregivers to people with AD (20.2%) and 40% of caregivers for people with DLB experienced moderate or high caregiver burden with an increased risk of psychiatric disorders in the early stage of dementia. High Relative Stress Scale (RSS) total scores in caregivers was significantly associated with neuropsychiatric symptoms (Neuropsychiatric Inventory, p = 0.004) and also with impaired ADL functioning (Rapid Disability Rating Scale-2, p < 0.0005). Conclusion: Caregiver distress differed (RSS total, p = 0.005) between people caring for someone with AD (15.0) and those caring for someone with DLB (19.9). These findings have direct implications for the needs and resources that could be available for these individuals and indicate the need for further research into caregiver burden in carers to people with DLB. Copyright © 2016 John Wiley & Sons, Ltd. Ethics and dissemination: Cohorts were ethically approved by the Regional Ethics Committee for Medical Research Ethics in Eastern and Western Norway.
This article reviews the development of a social model of disability and considers whether or not it provides a helpful framework for dementia care. The social model has not yet fully included cognitive impairment, although considerable work has been carried out with regard to learning disability. By applying this model to dementia care, those who surround people with dementia can review the impact that they as 'non-demented' people have on others; can reconsider the value of hearing and responding to personal experiences; can reframe the focus to consider abilities instead of losses; and can better understand the impact of public policy. The article also considers the present shortcomings of a disability model in terms of how it relates to dementia care and concludes with some thoughts for future consideration. The article draws heavily on the findings of a research project conducted by Dementia Voice and the University of the West of England, Bristol, UK to consider the needs of two sub-groups of people with dementia – younger people (i.e. those under the age of 65) and those from minority ethnic groups.
Leaflet outlining local authorities’ duties and functions in relation to the assessment and support of carers under the Social Services and Well-being (Wales) Act. The Act consolidates the law relating to carers and gives them equivalent rights to those of the people that they care for. The leaflet briefly covers the provision of Information, Advice and Assistance services; proportionate assessment; supporting carers through community based preventative services; carer support plans; and what happens if the carer and the person cared for move from one authority area in Wales to another.
Provides guidance to the Part 4 of the Social Services and Well-being (Wales) Act 2014, focusing on eligibility, care planning and direct payments. In particular, the code determines the point at which an individual will have an enforceable right to support from the local authority and the authority has a legal duty to provide or arrange care and support; sets eligibility criteria that will apply to all people – children, adults and carers; sets out the requirements of a care and support plan; and sets out the circumstances required by a local authority when making direct payments.
The grim prognosis that accompanies a diagnosis of a malignant glioma affects quality of life (QOL) as patients attempt to adapt to overwhelming losses. Caregivers also experience negative changes in QOL as responsibilities grow. This pilot study measured the QOL of patients with malignant gliomas prior to tumor progression and the QOL of their caregivers. It examined negative and positive factors that impacted the QOL while highlighting positive factors often overlooked in brain tumor QOL research. Standardized QOL questionnaires and focus groups were utilized. Patients experienced distress in the domains of physical, psychological, and social QOL but in all four of the QOL domains there were also positive outcomes. Caregiver data demonstrated mostly positive outcomes in the four QOL domains except for loved one's declining health and fear that the loved one would die.
The ageing of the population will increasingly result in reliance on the family for care in the community. Existing reviews have provided insights into the needs and health outcomes of family caregivers, but are disproportionately skewed towards spousal caregivers. Presently, a large majority of family caregivers are adult children. Adult children are distinct from spousal caregivers in terms of the combination of roles they occupy and the relationship they have with the care recipient. These unique considerations can have important implications for their well-being. A growing body of literature has investigated the factors that contribute to adult children caregivers' (ACCs) well-being; however, no reviews to date have synthesised this body of literature or appraised its methodological quality. Our objective was to identify the range and types of factors that contribute to ACC well-being across studies. A scoping review was conducted. Medline, Psycinfo, EMBASE and CINAHL databases (January 1996–August, 2012) were systematically searched for studies investigating ACC well-being. Inclusion/exclusion criteria were applied, methodological quality was appraised, the data were charted and a narrative synthesis was conducted. Fifty-five studies met our inclusion criteria. Factors that contribute to ACC well-being were found to be either: (i) care recipient-related (e.g. nature of limitations, amount of care required); (ii) caregiver-related (e.g. psychological dispositions of the ACC); or (iii) socially embedded (e.g. parent–child relationship, multiple role involvement, social support available to the ACC). Socially embedded factors that contribute to ACC well-being have received the most attention in the literature. Among these factors, ACC well-being is uniquely impacted by the quality of the parent–child relationship and combination of roles occupied. The majority of studies were cross-sectional. Future studies should therefore employ a longitudinal design to inform our understanding of the changes that take place in the parent–child relationship and multiple role involvement across the care-giving trajectory.
The life of close relatives of persons with bipolar disorder (BD) is associated with emotional distress, depression, and a high level of use of mental health care. Illness-related changes of their life situation endanger relationships, social life, finances, and occupational functioning. Understanding of facilitating conditions for close relatives is still a neglected research area. The aim of the present study thus was to explore what makes the life of close relatives of persons with BD more liveable. A lifeworld phenomenological approach was used. The findings reveal that keeping distance, having stability in everyday life, and strengthening equality through transparent communication are conditions that enable close relatives to influence the unpredictable and its consequences and thus make life more liveable. This implies contributions from close relatives, the person with BD, and the caring services. We propose that health-care support should not be divided in support for the patient and/or the close relatives but instead be designed as support for the ‘patient and close relatives’ as a unit. Professional caregivers need to take responsibility for creating intersubjective settings for the person with BD and their close relatives to share their needs and make joint plans for how to influence the illness-related life issues.
The project was set up to improve the support offered to carers of people with serious mental health problems through supportive and educational group workshops. It aimed to empower carers by improving their understanding of mental health services and care; and to develop a model of carer and mentoring support. From the 15 carers recruited, five left due to personal circumstances leaving a core group of 10. The group also contained a high proportion of black and minority ethnic carers. Although outcomes showed no significant shifts in thinking or change for carers, the workshops did help carers to develop resilience, working with health professionals, and empowering their advocacy role. Carers also valued the opportunity to listen and learn from each other and peer support developed throughout the programme.
This paper provides an overview of the GOLD programme at the Foundation for People with Learning Disabilities. It describes the work of the 13 funded projects in a context of wider research concerning ageing and learning disabilities. Particular attention is given to those people living with older family carers and those living in residential services for older people. The picture is of services that offer little confidence for the future, as people with learning disabilities grow older.
The aim of this study was to examine the ways in which young carers come to the attention of voluntary and statutory agencies and to identify the ways young carers needs are assessed. The report sought to identify the approaches that are successful in meeting the social, economic, educational and health needs of young carers and to assess the results of evaluations of the way the services are delivered.
Over half of American workers are holding a paid job while also providing unpaid assistance and support to a family member. Research shows that family members who provide care to children or adults with special health care needs are themselves at risk of physical and mental health problems. Yet, little research has explored how the work environment mediates the effects of caregiving on caregivers’ mental and physical health. With a sample of 2455 currently employed U.S. adults from the Work, Family, Community Nexus (WFCN) survey, a random-digit dial, nationally representative survey of Americans aged 18–69, we examine whether paid leave and flexibility policies mediate the relationship between caregiving and health.
In Ordinary Least Squares regression models, we find that paid leave to address family members’ health was associated with better mental health status as measured by the 5-item Mental Health Inventory and paid sick leave with better physical health status as measured by self-rated overall health status. A supportive supervisor was also associated with improvements in mental and physical health. For both men and women, paid leave and a supervisor’s support offset some or all of the negative effects of caregiving, but for women, the buffering effects of working conditions are slightly larger.
Enhancing the unpaid leave guaranteed in the U.S. Family and Medical Leave Act so that it is paid and passing national paid sick days legislation will help ensure that employed caregivers can retain their jobs, receive needed income, and meet their own mental and physical health needs.
The changing context of palliative care over the last decade highlights the importance of recent research on home-based family caregiving at the end of life. This article reports on a comprehensive review of quantitative research (1998—2008) in this area, utilizing a systematic approach targeting studies on family caregivers, home settings, and an identified palliative phase of care (n = 129). Methodological challenges were identified, including: small, non-random, convenience samples; reliance on descriptive and bivariate analyses; and a dearth of longitudinal research. Robust evidence regarding causal relationships between predictor variables and carer outcomes is lacking. Findings suggest the need for knowledge regarding: family caregiving for patients with non-malignant terminal conditions; whether needs and outcomes differ between family caregivers at the end of life and comparison groups; and caregiver outcomes in bereavement. Clear definitions of ‘family caregiving’, ‘end of life’, and ‘needs’ are required as well as greater application and testing of theoretical and conceptual explanations.
Objective: To assess the mental health care system in Germany from the point of view of the federal association of family carers of people with mental illness. Method: Family carer involvement and perspective are discussed on the basis of available literature, questionnaire surveys and documents of carer organizations. Results: At the beginning of the reform movement the views of informal carers were not discussed. Since 1985 family carers have joined forces to express their views on needs of the severely mentally ill and their carers. Their aim is to point out deficits of the care system and to work towards improved care for their relatives with mental illness and changes in the mental health care system. Conclusion: In the reform process informal carers should receive support and be respected as experts and partners.
Background: Studies have indicated that family members of persons with mental illness often experience stigma in relation to their relatives' illness. Less is known about the type of experiences they face and how they cope with these experiences.
Aims: To explore family members' experiences and efforts to cope with mental illness stigma in social encounters.
Method: A qualitative immersion/crystallization analysis of focus group data was used to examine family members' experiences and responses to perceived stigma.
Results: Family members reported experiencing rejection, blame and avoidance by others, engendering hurt, disappointment and shame. They employed flexible coping strategies depending on their personal resources, motivation and their relatives' willingness to disclose.
Conclusion: Findings suggest that families learn from their own experience the “art of selective disclosure”: what, when, how much and who to share information with. Coping strategies are developed based on the situation and family members' needs and personal resources which differ between families and over time.
The aim of this article is to describe the development and initial validation of an instrument for comprehensively identifying the information needs state of individuals who performed the role of informal carers. This study used two phases: a qualitative phase for the generation and review of an item pool (data collected from nine informal carers) and a quantitative phase (data collected from 198 informal carers) for items reduction and evaluation through exploratory factor analysis, and assessed validity and reliability. The process revealed six measurement scales useful for operationalizing the information needs state of informal carers. A 23-item scale was derived consisting of recognition and nonrecognition of information needs and four states: recognized-demanded, recognized-undemanded, unrecognized-demanded, and unrecognized-undemanded information needs. The six constructs had satisfactory psychometric properties in terms of Cronbach’s alpha, which ranged from 0.60 to 0.775. This article provides evidence to support the convergent and discriminant validity of the information needs state scale. It enables researchers to comprehensively identify the information needs state of informal carers and potentially other groups.
Person-centred approaches place individuals with a disability at the centre of decision making, with their carers and family invited to be partners in the process. Rather than being required to fit within existing service programs, person-centred approaches enable individuals to choose the support options that best meet their needs. In order to facilitate this, person-centred approaches will be accompanied by the introduction of individualised funding. This means the individual will be provided with funding to purchase services of their choosing. Given these significant changes occurring in the disability sector, Carers NSW surveyed informal carers of people with a disability to identify what they knew about person-centred approaches and how they felt about their introduction. Survey results indicate that there is a need to increase the capacity and willingness of carers significantly in order to engage with person-centred approaches and individualised funding. Carers require targeted and comprehensive information about these concepts in order to understand fully the changes occurring within the disability sector. These findings also indicate specific areas that need to be addressed in order to increase carers' awareness of these concepts and also to address existing negativity and confusion.
Introduction: Carers of patients with lung cancer often have a short time to access the support they require. The Macmillan Carers Project (MCP) was set up to provide non-clinical social support targeted in the community to the carers of patients with lung cancer and this study describes its evaluation. Methods: Prospective case study using interviews with the carers, project workers and health and social care professionals to obtain qualitative data for thematic analysis. 81 patients’ carers received support from the MCP; 20 carers, 2 MCP workers and their manager and 10 other professionals (chest consultant physician, lung cancer clinical nurse specialist, GP, four Macmillan nurses, hospice social worker and two community social workers) were interviewed. Results: Patients were predominantly male (62%), mean age 71 years and carers were predominantly female (70%) mean age 63 years. Carers identified the MCP as providing emotional support, more time, practical help, financial advice, information and back-up for a myriad of problems. Although there was some overlap with other services, the MCP was valued by carers and professionals as filling a gap in social care. Conclusions: The unique aspect of this study was support targeted to the carers of a single cancer site (lung) rather than generic cancer support. As lung cancer may progress rapidly, patients and their carers have a short time to gather new information, access services and adjust to their new circumstances and roles. By focusing on the needs of carers from the time of lung cancer diagnosis, we have shown that the MCP was a valued additional service, well received by carers, patients and professionals.
Purpose – Around 50 per cent of carers of people with eating disorders (EDs) experience mental health difficulties. The purpose of this paper is to investigate well-being of carers of people with ED and carers of people with severe and enduring eating disorders (SEEDs).
Design/methodology/approach – Carers (n=104) were recruited from UK support groups and stratified using duration of the care recipient’s ED (0-2, 2-6, > 6 years), with the > 6 years category classified as SEED. Data were compared with existing carer well-being studies of other patient groups.
Findings – Carers of people with SEED were not significantly different on reported well-being to carers of people with ED. However, carers of people with ED reported significantly less well-being than community norms, carers of people with brain injury and of people with dementia. Specifically, poorer social functioning was reported.
Research limitations/implications – Further research on carers of people with SEED is warranted as carers of people with SEED were not equally balanced in gender. It would be beneficial if support groups and skill-based workshops were more available for carers.
Originality/value – This is the first known study to compare carer well-being of people with SEED with carers of other clinical populations. Further research is required to identify the needs of carers.
Because of the trend toward shorter hospital stays, family caregivers of stroke survivors are expected to accept more responsibility for helping survivors during the subacute recovery process. The caregiver role is associated with negative health outcomes, yet existing literature differs on whether work status is a contributor. The purpose of this secondary analysis was to examine how caregiving affects employment and to compare characteristics of working and nonworking caregivers. Baseline data of family caregivers (N = 132) caring for stroke survivors 3-9 months after stroke and enrolled in a national multisite study were used. Caregiver characteristics of physical health, depression, fatigue, family functioning, and family conflict were measured. A total of 36% of caregivers reduced their work hours, resigned, or retired from their jobs to care for their family member. A larger proportion (n= 25, 66%) of minority caregivers were employed (full time or part time) compared to white caregivers (n = 43, 46%). Caregivers employed full time were younger and in better physical health but were at higher risk for depressive symptoms than nonworking caregivers. Family function and conflict were similar between the groups, but working caregivers received more assistance from other family members. Healthcare professionals and employers can use these findings to assist them with recognizing the needs of employed caregivers and offering support measures to facilitate their dual role.
Purpose of the study: Caregiver burden is a multidimensional construct, addressing tension and anxiety (stress burden), changes in dyadic relationships (relationship burden), and time infringements (objective burden) resulting from caregiving. The study aims were to assess (a) whether the dimensions of burden were the same for caregiving spouses and adult children, (b) the role of assisting with problem behaviors (PBs) and activities of daily living (ADLs) on each dimension of burden, and (c) the role of each dimension of burden on self-rated health and intention to institutionalize the care receiver. Design and Methods: This study included 280 spouse/partner and 243 adult child caregivers of persons with chronic illnesses. Results: Analysis using 2-group structural equation modeling showed that the factor structure of burden was equivalent for spouses and adult children. For both groups, assisting with ADLs was directly related with objective burden, whereas PBs were directly related to all dimensions of burden. For both groups, stress burden was the only predictor of self-rated health, whereas PBs were significantly linked with intention to institutionalize. However, stress burden among spouses and relationship burden among adult children were significantly linked with intention to institutionalize. Implications: We discuss the research and practice implications of the differing needs of spouses and adult children.
For a long time, the international literature has described the Italian public system of home care for frail elderly people as underfunded and mostly cash-oriented; a system, thus, relying almost entirely on informal care provided by the family and, more recently, by migrant workers. Abroad and in Italy, most experts have long shared the expectation that, if and when, public expenditure devoted to home care was to increase, the outcome would be an expansion in the provision of services in kind. This study analyses how the provision of home care actually has changed in the last decade. The analysis reveals that indeed public expenditure has risen. However, while the system of home-care provision also has changed, it has done so in the opposite direction to that expected. In fact, most of the additional resources have funded an increase in the number of users of the companion payment [Indennità di Accompagnamento (IA)], a cash benefit of €487 per month. In this respect, the Italian welfare system is more cash-oriented than it was 10 years ago. This article discusses the reasons behind the increased uptake of the IA, namely: an increase in the needs and demands of older people; the traits of the Italian welfare system; and the peculiar features of the companion payment itself. The article then looks at why services in kind rose to a lesser degree, pinpoints the main reason as being based on the politics of social care at national level, and finally focuses on the challenges that the Italian home-care system has to face within the changed policy environment with respect to quality of care, carers’ conditions and support for users with high-level needs.
Inequality and exclusion are characteristic of the experience of UK South Asian communities. In health care, community needs are often not addressed by health and social welfare services. An increase in cultural competency is now part of identified policy. The aim of this paper is to examine the extent to which there is evidence of cultural competency amongst professionals concerning South Asian parents caring for a person with cerebral palsy. Semi‐structured interviews were conducted with respondents from 19 service organisations. Results are presented on perceptions of service delivery and on the dynamics of service development: evidence is found that inadequate service delivery continues despite professional knowledge that it exists. Conditions necessary for the achievement of cultural competence are discussed. We suggest that service development to meet the needs of South Asian carers must form part of an overall strategy geared to change at different levels within and outside service organisations.
Background and aim: While the number of people suffering from dementia in the Netherlands will double in the next 25 years, there are no plans to expand the capacity of residential care facilities for these patients. This will almost inevitably lead to an increase in the burden placed on informal carers. We investigated how caregivers living with a loved one who has dementia experience their caregiving situation.
Methods: For this study, 53 caregivers ranked a structured set of opinion statements covering a representative range of aspects of caregiving. By-person factor analysis was used to uncover patterns in the rankings of statements.
Results: Five distinct profiles of caregiving were identified that provide information on the various care situations that can occur, the needs and dilemmas that these caregivers face, and the subjective burden and perseverance time of the carers.
Conclusions: The findings contribute to the development of interventions for the support of informal caregivers.
The aim of this review was to identify the most frequently encountered longer-term problems experienced by stroke patients and their informal carers. Systematically identified qualitative studies describing self-reported experiences of stroke-related long-term problems were independently reviewed and the findings analysed using a clustering technique. Twenty-three qualitative studies, which included approximately 500 patients and 180 carers, were identified by the search methods. Most of the studies were cross-sectional, United Kingdom-based, and employed semi-structured individual interviews. The review identified 203 problem areas, which were categorised into five domains: hospital experience; transfer of care; communication; services; and social and emotional consequences. The largest domain was the social and emotional consequences of stroke, representing 39% of all problem areas. These included problems relating to mood, social changes, attitudes to recovery, and changes in self-perception and relationships. Service deficiencies, encompassing both health and social care, was the second largest domain, accounting for 29% of the problem areas. The review provides a basis for a user-focused, longer-term stroke service. The need for responses that go beyond the traditional physical rehabilitation approach is evident, and research to identify broader treatment strategies is now required.
Background The General Household Survey 2000 shows that approximately 6.8 million adults in Britain provide care to sick or disabled relatives or friends, or the elderly. Carers report high levels of stress, anxiety and depression, as well as general health problems and physical injuries such as strained backs associated with lifting. The more demanding care, the less likely it is that carers will have time to attend to their own health care needs. Current government policy puts an emphasis on supporting carers in their caring role, and ensuring that the NHS and social services helps them maintain their health. The intention that carers obtain quality health care services is not necessarily realised in practice. Many carers feel marginalised by health care professionals and believe that their own needs for health care are overlooked. Consequently, it is important to identify the barriers that prevent carers from accessing, and utilising, effective health care services, as well as interventions that can improve accessibility.
Objectives of the study The overall aim of the work was to inform the NHS Service Delivery and Organisation (SDO) R & D Programme about the theory and evidence on carers’ access to health care. The two key objectives were: • to examine the evidence from UK and international research (published and unpublished) in order to identify: – the problems and barriers that carers experience in accessing health care services, and any associated issues relating to equity of access and level of unmet need – evidence of interventions designed to improve carers’ access to health care services, and how these vary according to age and circumstances • to consult with key stakeholders with an interest in carers’ access to health care about the findings from the review and recommendations for further research. The following report documents key themes from the literature review and consultation. In addition, it presents a typology of barriers that carers encounter when accessing health care, and develops a model of access to health care specifically for carers. Detailed information about the interventions reviewed can be found in the supplementary report: Access to Health Care for Carers: Intervention Evaluations.
This article uses recent research and practice guidance to explore the implications of the Carers (Equal Opportunities) Act 2004 for professionals who work with carers of working age.
Integrated care pathways (ICPs) are prearranged processes of care that are being increasingly used to deliver mental health services. The literature to date reveals relatively little about service user and carer experience in relation to their use. This study was completed as part of case study research and focused on the experiences of service users and carers gathered using focus groups, as a unit of analysis. The findings revealed a number of contrasts including the perspective that people did not feel that their care was individualized to them, although among them they had different perceptions of the care process. Conclusions suggest that mental health ICPs need to reflect the relationships between stakeholders, variability of illness and individual ways of living if they are to provide a framework for managing care which is responsive to the needs of people using mental health services.
Since the early 1990s, UK social care policy has committed to supporting carers. Legislation (England and Wales) over this time period has recognised the importance of separate carer assessments that take into account an individual's ability and willingness to care. This paper considers carer assessment from the perspective of social care practitioners. It reports on qualitative data from a carer research programme that spans over 20 years (1993 to present) and includes 383 in-depth interviews with social care practitioners across England and Wales. Offering unique longitudinal insights, we identify some persistent tensions associated with the translation of UK carer assessment policy into social care practice. We explore practitioners' long-standing ambivalence towards carer assessment and their reluctance to evidence carer need via a separate assessment process. Deficits relating to the conduct of carer assessment are identified. For example, the reliance on structured, problem-focused assessment protocols that restrict discussions to the personal care aspects of caring and fail to capture the complex, diverse lives that carers lead. Carer assessments do not reflect the reciprocal nature of many caring relationships, as a one-way direction of care is assumed. They do not take into account the broader support network of individuals who may be involved in helping someone with complex care needs. Carer willingness to care continues to be taken for granted and planning for the future is a significant gap in carer assessment practice. The proposed changes to the social care systems across England and Wales provide a timely opportunity to review the process and conduct of carer assessment. Policy guidance needs to clarify the links between service user and carer assessments and the way these align within broader assessment and care management frameworks. Assessment tools that encourage a narrative approach to carer assessment and capture the affective aspects of care-giving could benefit future practice.
Introduction: An aging population is fueling interest in assisted living technologies (ALTs) to support independence at home. Numerous ALTs have been developed and deployed, but uptake and use has fallen short of levels predicted by policymakers. A key reason is a lack of understanding of users’ needs. In this paper we report findings from the ATHENE (Assistive Technologies for Healthy Living in Elders: Needs Assessment by Ethnography) project, which is funded by the Technology Strategy Board under its Assisted Living Innovation Platform programme. The project aims to produce a richer understanding of the lived experiences and needs of older people and explore how ALT stakeholders – suppliers, health and social care providers – can work with users and carers to ‘coproduce’ ALTs. We focus, in particular, on the role of ‘bricolage’ (pragmatic customisation, combining new with legacy devices) by informal carers, such as family members, in enabling ALTs to be personalised to individual needs. Bricolage allows users and family members to take the initiative in ‘coproducing’ ALTs. that making assisted living work relies on collaboration, involving not only formal carers, but also informal ones. We argue that a new research agenda is needed, focusing on solving challenges of involving users and their informal carers in the straightforward and dependable co-production of ALTs.
There has been growing recognition of the important role that carers play in enabling vulnerable adults to remain in the community. Recent legislation has recognised the role of the family carers and encouraged the development of support services. Considerable research has been undertaken to identify the needs and the experiences of the carers in general but little specific attention has focused on older carers. This is despite the fact that they have their own unique needs which may have been hidden in previous research. This review commissioned by Help the Aged brings together exisiting evidence and supplements it with fresh analysis of the General Household Survey 1995 [GHS 1995] to draw out the particular needs of carers over the age of 60.
Significant demands are being placed on the informal caregivers of chronically ill patients, including those suffering from cancer. Health care professionals need to be aware of these demands, and they need effective tools to assess the impact these demands place on the caregivers. Over the past 25 years, researchers have developed self-report instruments to assess informal caregivers. These instruments assess various aspects of the caregiving experience, including caregiver burden, needs, and quality of life. The purpose of this review was to identify and critically evaluate these instruments. MEDLINE and PUBMED were searched from 1966 to 2002. After an extensive literature search and review, and utilizing specific inclusion criteria, 28 instruments were identified and evaluated in terms of their development, content, and psychometric properties. In addition, a history of the construct and measurement development in the areas of caregiver burden, needs, and quality of life are discussed. Although some further development and refinement of instruments could benefit the field, depending on the questions researchers or clinicians seek to pursue, there are many proven tools available for their use. Future research needs to use these instruments to assess the effectiveness of interventions aimed at improving the care of the caregivers.
Support for unpaid carers has rightly become an important policy area in Scotland. In some ways, Scotland is ahead of other parts of the UK when it comes to developing services for carers. To build on this, the Scottish Executive undertook a project looking into the future needs of unpaid carers, and how services might need to change over the next 10 years. The aim was to create a picture of what services unpaid carers need, and how best to deliver these services so that they make a difference to people’s quality of life.
Original documents on Scottish Government website.
Our purpose in this paper is to report on the frustrations and unmet needs of paid, formal caregivers and unpaid, family caregivers who together provide care to adults with disabilities and/or mental health issues. We conducted eight focus group interviews between November 2010 and June 2011 in two large, urban centres and one smaller centre in Western Canada. Four of our focus groups were with family members including adults with disabilities and/or mental health issues, their parents and their siblings, and four were with representatives from agencies providing support and services to adults with disabilities and/or mental health issues and their families. Data were collected from 23 family members and 24 agency representatives who responded to questions about successes and struggles in meeting, and collaborating to meet, care needs of adults with disabilities and/or mental health issues. Each focus group session was digitally recorded and transcribed; field notes were also taken and we thematically analysed data according to family versus agency perspectives of their successes and barriers in care provision and care collaboration. We found that family members desire greater and more effective support in enriching the lives of adults with disabilities and/or mental health issues and in preparing for age-related changes. Agency representatives are keenly aware of the needs and challenges faced by families, yet grapple with being effective collaborators with families of widely varying priorities and styles of care and collaboration.
Unpaid carers provide the backbone for community care, supplying the everyday support and care to users which paid carers would otherwise have to provide. There is increasing political awareness about the need to support carers if the rhetoric of community care is to be a reality. Both research and policy documents emphasise the carer's need for information. Carers see the Primary Health Care Team as being pivotal in providing them with advice, support and information. This paper describes a study to identify carers in a general practice and to provide them with information. A large scale mailed survey of all adults in the practice was used to identify carers who were then asked if they wanted a pack of local information. Of the patients who responded, 6% identified themselves as a carer and of these, 63% requested information.
This article discusses the aims and objectives of the new working-age agency, Jobcentre Plus, and the challenges faced by staff in the former Employment Service and Benefits Agency in delivering on its vision of a work-focused service designed to reach 'hard to help' groups. It looks at the training needs of staff involved in the new service, and how the Jobcentre Plus Stakeholder Forum contributed to identifying them. It considers some of the early successes and problems in this process, and then goes on to explore the needs of one particular client group, carers. Finally, it describes an innovative partnership project, led by Carers UK, that will support Jobcentre Plus in meeting those needs.
The profile of adult social care has probably never been higher and one of the biggest questions is how to manage demographic pressures on services as resources reduce, while aiming to improve outcomes and maintain quality. One group which brings these issues into sharp focus is the rising number of people with dementia and their carers. In this particular instance we have the additional focus given by the launch of the Prime Minister's dementia challenge. The challenge seeks to move further and faster in achieving the aims of the national dementia strategy focusing particularly on creating dementia-friendly communities, improving care and health and better research. This article sets out the context for the challenge, the logic behind extending the particular objectives set out in the challenge to better encompass social care and describes the action plan put together by the champion group for improving health and care. The article goes on to suggest that while the objectives of the Prime Minister's challenge and the action plan are to improve the lives of people with dementia and their carers, there is much that translates to care and support more generally. The vision set out in the recent white paper on care and support is one which will complement and enhance the objectives set out here. We will get the best outcomes if we focus on individuals and their needs in the context of their families and communities, providing treatment or support for specific conditions including dementia, but never losing sight of the person. If we can get some of these things right for people with dementia we will get it right for others too.
Objectives: Increasing attention has been paid to the needs of family members caring for a person with dementia but little has been written about the impact on the wider family. This paper was intended to see whether the need for information would stretch to those relatives living far from the patient.
Method: A case-control study comparing two sets of relatives of community-dwelling probands in contact with secondary services and having a clinical diagnosis of dementia: one set of relatives living less than an hour away and another set living further away. The reported need for and source of information obtained by relatives was questioned using a specially designed questionnaire. Mini Mental State Examination (MMSE) and Clinical Dementia Ratings Scale were used with probands.
Results: Relatives living distantly from the person with dementia reported similar rates of subjective distress but were more often dissatisfied with information received. Distant relatives were also less likely to access information from books or lay societies.
Conclusion: The impact of having a relative with dementia does not lessen with distance. The wider family need support and information as well as ‘primary carers’. If the whole family is to be supported in their caring role, then clinicians and the lay societies need to widen their supportive net. Copyright © 2002 John Wiley & Sons, Ltd.
The article examines how the Care Act 2014 is changing social care provision in Great Britain. Topics discussed are the concept of a person's well-being, the safeguarding duties of local authorities under the law, the physical, mental and emotional well-being needs of carers, the national eligibility criteria for social care services, the changes to the way care social services are paid for, and the transition arrangements from the old to the revised law.
Macmillan Cancer Support’s Worried Sick report presents a summary of the findings of a major quantitative survey conducted by Opinion Leader Research (OLR). The survey explores the impact of a cancer diagnosis on the lives of both people with cancer (who have received the diagnosis) and people affected by cancer (family members and friends who often help them cope with their cancer experience). Specifically our research objectives were to examine the impact of a cancer diagnosis on: • Living with cancer every day, including people’s experience of the cancer information and support system and the physical impact of cancer • People’s emotional well-being and relationships • People affected by cancer (informal carers, who may be a relative or friend) The research also aimed to establish any differences between the views and experiences of people living with or affected by cancer, and those who had never been affected by the disease.
Informal carers in cancer and palliative care are known to have high needs and psychological morbidity, yet a literature review identified few targeted interventions. This systematic review of interventions for carers of patients using home cancer and palliative care services searched Medline, CancerLit, PsycInfo and Cinahl databases. The terms used were carer(s), caregiver(s), palliative and cancer. Papers that reported interventions for adults actively providing informal care for noninstitutionalized cancer and palliative care patients were reviewed. Twenty-two interventions were identified, comprising home nursing care (four), respite services (three), social networks and activity enhancement (two), problem solving and education (three) and group work (10). Of these, nine were delivered solely to carers (i.e., were targeted services). Only six of the carers' interventions had been evaluated, two of these had used a randomized control trial (RCT; grades IB), three employed a single group methodology (two prospective grades IIIC and one retrospective grade IIIC) and one was evaluated using facilitator feedback.
There was a lack of outcome evaluation designs, small sample sizes and a reliance on intervention descriptions and formative evaluations. Methodological challenges may mean alternatives to ‘pure’ RCTs should be considered. The current evidence contributes more to understanding feasibility and acceptability than to effectiveness. Practitioners and evaluators must prioritize the further development of intervention studies.
1.. As one of our witnesses observed, "we all die … 100% mortality is an immutable fact and it is not actually a sign of failure".[1] However, death remains the last taboo. Every year about 520,000 people die in England, around a quarter of whom access some form of palliative care. Many patients experience "severe symptoms" and "psychosocial problems" in their last months of life.[2]
2. Palliative care has much to offer in terms of addressing these problems, with its goal of achieving the best quality of life for the patient with advanced progressive illness, and for their families, friends and carers. Sir Nigel Crisp, Chief Executive of the NHS, has described better care of the dying as "a touchstone for success in modernising the NHS" and "one of the really big issues" which must be addressed.[3]
3. We announced our inquiry into palliative care on 23 January 2004 with the following terms of reference:
The Committee will inquire into the provision of hospice and palliative care by the NHS and by independent services, including the related support services of local authorities and other agencies for both adults and children. The inquiry will examine the extent to which the needs and wishes of patients of different ages are taken into account, including their care choices, ethnicity, cultural and spiritual beliefs. It will address the financing, governance, staffing, location and quality of palliative care.
In particular the Committee will examine:
Objective: The objective of this study is to test the validity of an accreditation programme for memory services in the UK by investigating whether different levels of accreditation status (excellent compared with accredited) are reflected in patients' and carers' reported satisfaction. Method: A comparison of survey data from patient and carer feedback questionnaires collected from services as part of the accreditation process. Results: Five hundred and eighty-three patient questionnaires and 663 carer questionnaires were returned from 41 services. Patients and carers who attended memory services which were later ‘accredited as excellent’, were more likely than those who had visited ‘accredited’ services to have: been given written information about a variety of topics; been asked for feedback about using the memory service; and had found it easier to get to their appointments. Carers attending services accredited as excellent were more likely to have been offered an assessment of their needs. Conclusion: Patients and carers had very good experiences of memory services overall whether they had standard or excellent accreditation. However, ‘excellent’ services were consistently better on a number of factors. This provides further support that the accreditation process is an important indicator of the quality of memory services. Copyright 2015 John Wiley & Sons, Ltd.
This report presents findings of a questionnaire-based survey of the financial position of carers in the UK conducted by the Carers National Association (CNA), the starting point of which was that government carers strategies published recently for England and Scotland have omitted to address carers' financial problems. The survey suggested that a large proportion of carers providing substantial care are faced with financial hardship. The report presents a detailed account of the effects of caring on income and finances, the diversity of needs according to the age, ethnic background, and benefit status of carers, and the changes which carers would perceive to be most beneficial. A concluding chapter sets out the CNA's recommendations for reducing poverty and social exclusion among carers, and promoting paid employment and recognition of the value of the work of carers. An appendix contains the questionnaire. References cited at the end of each chapter.
Background Diabetes mellitus is a major health problem in all age populations, with complications that adversely affect the autonomy and quality of life of patients and their kindred ones, with a heavy demand on health care resources. Sedentary lifestyle, urbanization, eating habits and increasing obesity have been identified as independent risk factors for diabetes. Aim of study To establish the effectiveness of a daily walk and diet education intervention in order to look for optimum ways to change and maintain a healthy lifestyle and quality of life. Sources of research The study population consisted of Caucasian men and women ranging in age from 60 to 91 years old (mean=76.42 years old) with Type 2 Diabetes Mellitus of duration at least one year, attending two primary care offices in Iasi, Romania. Patients had a clinical and laboratory follow-up assessment every 1 to 2 months. For each of them, open interviews were conducted with consistent educative information offered related to ongoing nutrition, self-management and physical activity. This data was subsequently analyzed both in a quantitative and qualitative manner. Main Argument Outcomes of diabetes and co-morbidities management rely not only on drug medication, which depends on adverse effects like hypoglycaemia, the elderly patients’ income and their compliance, but also on human support (family, carers), non-pharmacological strategies like diet, and cardio-metabolic rehabilitation through exercise. Conclusions Results showed an improved glycaemic control, a higher awareness of symptoms and the complications of diabetes. Apart from patients’ self motivation, more frequent contact with them is necessary to encourage better self-esteem, disease prevention and quality of life. Patients who changed their lifestyle formed one important link in educating the closed ones. The role of formal and informal carers is more difficult and needs a different approach from that for younger people, taking into account co-morbidities, age-related changes in functional and mental abilities, occupational history and socioeconomic status that influence health.
This circular provides information on the administration of the 2010-11 allocation for local authorities taking part in the Carers Strategy Demonstrator Sites (CSDS) project. The CSDS project is a Department of Health initiative to look at ways of providing new approaches to offering breaks for carers, health checks for carers and better NHS support for carers. Plans for demonstrator sites were set out in the Carers Strategy “Carers at the heart of 21st-Century families and communities: A caring system on your side. A life of your own”.
This article reviews literature on the experiences of family carers when a relative goes into long-term care, with the aim of informing nurses on providing support. Experiences before and after the care placement are explored. The study found nurses fail to recognise carers' expert knowledge and skills about their cared for relatives. Families perceive their loved one's values, beliefs and life history are ignored. Nurses need to challenge barriers to communication, and move away from paternalistic and ritualised care practice.
The aim of this study was to explore the psychological processes and information needs in a group of 78 Hospital-in-the-Home (HITH) carers, randomly selected from two university teaching hospital HITH programs in Melbourne. Semi-structured interviews were conducted and explored with a computerised lexical thematic content analysis program. The results revealed that psychological themes of carers were mainly related to HITH clinical processes, procedures and the prediction of complications or deterioration of the patient. Carers indicated that they needed further information on the patients' clinical conditions, emergency procedures and how to detect deterioration. The implication for HITH nurses is that information provided to HITH carers should at least include these topics. The information needs of HITH carers appear to be different to those of the carers of individuals with chronic illness, consequently, nurses need to develop very specific patient and carer information materials for the HITH setting.
Home-care re-ablement is a short-term, intensive service that helps people to (re-) establish their capacity and confidence in performing basic personal care and domestic tasks at home, thereby reducing needs for longer term help. Home-care re-ablement is an increasingly common feature of English adult social care services; there are similar service developments in Australia and New Zealand. This paper presents evidence from semi-structured interviews conducted in early 2010 with 34 service users and 10 carers from five established re-ablement services in England. The interviews formed part of a larger, mixed-methods study into the immediate and longer term impacts and cost-effectiveness of home-care re-ablement services. There was clear evidence that interviewees felt that they had benefitted from re-ablement services; most service users and their families valued the intervention. However, the interviews also identified potential barriers to optimal independence for some service users, particularly those with progressive conditions, sensory impairments, specific cultural needs, or who lived alone. The beneficial impacts of re-ablement could also be reduced if users failed to understand the aims of the service, or if the service failed to provide support with activities or outcomes that were particularly important to the service user or carer. Putting the lived experiences of people receiving re-ablement at the centre of analysis, this paper concludes that re-ablement services have the potential for enhanced effectiveness, particularly if there is more understanding of users' own priorities and concepts of independence.
In the United Kingdom, informal carers look after relatives or friends who need extra support because of age, physical or learning disability, or illness. The burden of informal care work falls on women, who often care for longer hours and durations than men. This paper considers the impact that caring responsibilities have on women's employment. The research is based on a dedicated questionnaire and in-depth interviews with informal caregivers. The results suggest that carers' employment is affected by the duration of a caring episode, financial considerations, the needs of the person they care for, carers' beliefs about the compatibility of informal care and paid work, and employers' willingness to accommodate carers' needs. Overall, the research confirms that informal carers continue to face difficulties when they try to combine employment and care in spite of recent policy initiatives designed to help them.
This document outlines options for the design of national eligibility criteria for Wales. These were with advice from a Technical Working Group on Eligibility considering this issue on behalf of the Welsh Government in March and April 2014. The report has been prepared following the final meeting of the group on 2 April 2014 and refined through a wider stakeholder engagement process during May and June 2014. Determining eligibility is one step in a person’s journey through the system of care and support and should not be seen in isolation from other core elements of the new service model introduced through the Act. It is an element within a wider process for assessing and responding to the needs of the individual that reflects and complements the process for assessing and responding to the needs of the wider community. The report has been produced to support the development of regulations for determining eligibility. Further details about the wider process of assessing, planning, delivering and reviewing care and support will be developed through regulations under other sections of the Act and through the overarching code of practice
Psychotropic medications are a treatment commonly used for people with learning disabilities. Legislation and guidance suggest that, for a person to give informed consent to treatment, they must have knowledge of the potential treatment. This study of 21 people with learning disabilities, and their carers and prescribers, living in four different regions of England, suggests that few of the people with learning disabilities were fully informed about their treatment. Many of their carers said that although they knew how to administer the medication, they knew little about why the person was taking it and what the implications might be. Despite this, people with learning disabilities made the general assumption that carers would, or should, know everything about their medication. The current provision of information to people with learning disabilities and carers was found to be poor. Four key strategies identified in supporting people with learning disabilities in obtaining information about medication were spending more time providing and reiterating key information, providing accurate, up‐to‐date, accessible information about medications, providing training for carers in wider aspects of medication usage, and tailoring information to each person's individual needs.
Many carers need an outside interest, and Susan McGrath explains how this is being achieved in a project in East Sussex.
Background: despite evidence that needs assessment of older people can improve survival and function when linked to effective long‐term management, there is no structured needs assessment tool in widespread use. The Camberwell Assessment of Need for the Elderly is a new tool not previously evaluated in primary care. It includes the views of patients, carers and health professionals, enabling a direct comparison of their perspectives.
Aim: to conduct a feasibility study of Camberwell Assessment of Need for the Elderly in primary care and to compare the needs identified by patients, carers and health professionals.
Methods: we selected a random sample of 1:20 of all people aged 75 and over from four general practices in inner‐city and suburban north‐west London. We interviewed the patients, their informal carers and lead health professionals using the Camberwell Assessment of Need for the Elderly schedule.
Results: 55 (65.5%) of 84 patients, 15 (88.2%) of 17 carers and all of 55 health professionals completed interviews. The patients' three most frequently identified unmet needs were with ‘eyesight/hearing’, ‘psychological distress’ and ‘incontinence’. The carers' three most frequently identified unmet needs were with ‘mobility’, ‘eyesight/hearing’ and ‘accommodation’ and the health professionals' were with ‘daytime activities’, ‘accommodation’ and ‘mobility’. κ tests comparing patient and health professional assessments showed poor or fair agreement with 18 of the 24 variables and moderate or good agreement with six. None showed very good agreement.
Conclusion: the Camberwell Assessment of Need for the Elderly schedule is feasible to use in primary care and can identify perceived needs not previously known about by health professionals. A shorter version of Camberwell Assessment of Need for the Elderly focusing on areas of poor agreement and high levels of need might be useful in the assessment of needs in older people in primary care.
With end of life care a national priority in many countries, and the main place of care the family home, informal family carers are now considered the frontline of primary care. Yet we are insufficiently informed about the needs of carers, both during the time of caring and during bereavement. This study identifies which carers believed they did not get enough support from health services when caring for a terminally ill family member, what factors influenced perceptions of support, and whether inadequate support influenced the carer's health following the death of a family member. Unlike previous survey designs that explore end-of-life concerns, we were able to triangulate interview data from semi-structured telephone interviews (August 2005–June 2006) with a relatively large group of 1071 carers in Western Australia, with administrative records from death registrations, hospital morbidity and community care records from the 1071 deceased family members. The addition of administrative data allowed us to quantify hospital and community care service use. Data analysis consisted of summary statistics and logistic regressions for two groups of carers during the first few months of bereavement: those whose health got a bit/lot worse, and those who were not coping on most/all days. We found that carers were more likely to have poor health if they perceived they did not get enough support from health services and if the deceased family member did not die in the carer's preferred place of death. Additionally, carers were more likely to be not coping if they were aged 60 years or less, female, had lost a spouse/partner and the deceased family member did not die in the carer's preferred place. By identifying which carers are more vulnerable than others, carer education and practical support can be targeted to specific groups. Ideally resources for bereavement support should be extended into the months following the relative's death.
Previous studies have shown that caregivers spend on average 4.5 years caregiving, with the needs escalating over time, thus impacting caregiver health significantly over that period (Caregiving in theU.S., AARP and National Alliance for Caregiving). The Evercare study revealed that the more time caregivers spend caring for a loved one, the greater their health decline. This is even more true for those caregivers providing a higher level intensity of caregiving such as giving medications or injections, bathing, feeding, dressing or other activities of daily living. Caregivers who reported their health got a lot worse as result of caregiving (15%) spend an average of 58 hours a week caregiving and those with a moderate deterioration in health (44 percent) spend an average of 42 hours a week caregiving.
Family caregivers are an irreplaceable resource for the mental health services system and the pillars on which the system currently rests. Addressing the needs of these caregivers is therefore crucial for the survival of the system. This paper will present findings from a qualitative study that aimed to explore the experiences and needs of family caregivers who relatives were at various stages of recovery from mental illness. Participants for the study were members of carer support groups as well as non-member caregivers from various regions of Sydney, Australia. The findings highlight the heterogeneity among caregivers, the diversity in their needs, and the difficulties they experience in accessing support from public mental health services.
To tackle the problem of training the careers of senior citizens numerous educational options may be attempted. However, the emerging complex puzzle of the diversity of training needs for the aforementioned trainee group, consisting of a mixture of formal and informal careers, calls for a careful and perhaps more radical than the usually attempted approach. To this extent, this paper describes elements of the innovative efforts followed upon the training design of the DISCOVER EU project. Specifically, simulations of virtual patients in Second Life are exploited in conjunction with educational components and objects in semantically extended e-learning environments, in an attempt to make more realistic everyday training cases and diverse topic, content rich approaches. The whole endeavor is presented in view of the existing limitations to elderly careers' training and is soon to lend itself to a rigorous pilot phase in Greece. Planned evaluation sessions are envisaged to certify successes, to inform for any required improvements but also to identify pitfalls.
Context. Family carers need to be supported in their central role of caring for patients at the end of life, but brief practical tools to assess their support needs have been missing. To address this gap, we developed a brief evidence-based Carer Support Needs Assessment Tool (CSNAT) suitable for everyday practice. Objectives. To assess face, content, and criterion validity of the CSNAT and measure sensitivity to change over time. Methods. Participants were 225 adult carers of patients from six U. K. Hospice Home Care services. Carers were surveyed at baseline and at four-week follow-up using self-completed questionnaires, including CSNAT, standard measures (distress, strain, positive appraisals, preparedness, and global health), help provided with activities of daily living, and patients' symptom levels. Qualitative feedback on CSNAT was sought through 10 pilot carer interviews and professional and carer advisory group input. Results. The CSNAT has good face, content, and criterion validity. CSNAT domains comprehensively covered carer support needs. CSNAT scores showed clear and consistent positive correlations with strain and distress and negative correlations with preparedness for caregiving and global health. There also were clear correlations with help with activities of daily living and some relationships with positive appraisals and symptom burden. The CSNAT's sensitivity to change in relevant domains was similar to other measures. Conclusion. The CSNAT is a valid tool for the direct measurement of carers' support needs. It combines comprehensiveness of content with feasibility of administration and has utility both as a research tool and a tool for everyday palliative care practice.
Objective: To examine the unmet needs of informal carers of community dwelling disabled people and to compare their perspectives to those of disabled people and nominated professionals. It was hypothesised that a poor recognition of carers’ needs could have implications for carers’ well- being and thus their ability to maintain their caring role. Need was defined as a service or a resource that would confer a health or rehabilitation gain.
Design: Face to face interviews with carers and disabled participants, telephone interviews with professionals (Southern England). Disabled participants had been selected randomly from two disability registers.
Main outcome measures: The Southampton Needs Assessment Questionnaire (carers version), SF-36 (carers’ health status).
Results: Carers experienced similar health status to people in the general population. The most frequently carer-reported unmet needs were for short breaks, domestic help and respite care. Carers who had reported unmet need for short breaks had significantly poorer levels of mental health and vitality (SF-36) than carers who had not reported this. Similar numbers of unmet carers’ needs were reported by disabled participants, professionals and carers themselves. In terms of type of unmet needs, poor concordance between carers and disabled participants occurred in 52% of cases: carers reported more unmet needs than disabled participants for short breaks and domestic help. Poor concordance scores between carers and professionals occurred in 59% of cases: carers reported more unmet needs for short breaks than professionals and professionals reported more unmet needs for formal respite care.
Conclusion: In line with recent legislation, carers’ needs must be independently addressed and services, especially for flexible community support such as short break services, must be developed specifically to meet the needs of carers. Further research is warranted to evaluate whether recent legislation for carers has any effect on carers’ well-being and ability to cope with their caring role.
This study, funded by The True Colours Trust in association with The Princess Royal Trust for Carers, investigates the experiences, needs and service responses to the 290,000 young adult carers aged 16-24 in the UK today. The research is a ‘mixed-methods’ investigation and includes a literature review, secondary analysis of 2001 Census data, a survey of 25 young carers projects, a survey of 13 adult carers services, five focus groups with 29 young carers aged 16 and 17, discussions with staff at focus group sites, and in-depth interviews with 25 young adult carers aged 18-24 across Britain. The data presented in this report provides new insights into the diverse experiences and needs of what is a ‘hidden’ and neglected group of carers. The report provides data on the number of young adult carers; the changing nature of their caring tasks and responsibilities; their experiences of education at school, college and university; their friendships, relationships, leisure and lifestyles; income, jobs, careers and aspirations; issues to do with leaving home and independence; the role of young carers projects; emerging service responses; and how their needs can best be met. The report also includes a series of recommendations for service development for those working with carers aged 16-17, carers aged 18-24 and adult carers.
There is a wealth of literature that addresses the needs of informal caregivers and the needs of health professionals caring for someone with a life-threatening illness. However, there is a paucity of research that deals with nurses who are caring for their own relative who has a life-threatening illness. This qualitative study explores the information needs, support systems available, and the impact that this experience has upon the nurse's quality of life. Individual semi-structured interviews were transcribed and analysed using interpretative phenomenological analysis (Smith and Osbourne, 2003). Four superordinate themes emerged from the data: quality of life, personal and professional boundaries, disempowerment and positive aspects to the role. These themes were then linked to validated models of caregiving (Caron and Bowers 2003; Sherwood et al, 2004) to further explore their impact upon the nurse in his/her role as family carer. This study has established that nurses providing care for their own relatives have specific needs with regard to their dual role as a health professional and family carer. In understanding these specific needs, it may be possible to provide a more effective and equal level of support for these individuals. Implications for practice and future research are discussed.
The Scottish Executive commissioned this literature review. The overall aim was to provide a comprehensive summary of existing knowledge of how young carers are identified and how their needs are assessed and met. Therefore the review largely concentrated on the interaction between young carers and their families on the one hand and service agencies on the other. Understanding the needs of young carers was an important context for the review, but was not the primary focus. The specific objectives were to: • examine the ways in which young carers come to the attention of voluntary and statutory agencies, and factors inhibiting identification • identify the ways in which young carers’ needs are assessed • examine approaches to service provision by both statutory and voluntary agencies • identify approaches that are successful in meeting the social, educational and health needs of young carers • assess the results of any evaluations of the ways in which services are delivered.
White paper setting out detailed proposals to establish a new statutory framework to ensure that those with severe mental disorder get care and treatment to meet their needs and, secondly, that the public is protected from those who may, occasionally, pose a threat to their safety. The proposed changes will affect: local and health authorities; service providers in the statutory, independent and voluntary sectors; and people with mental disorders and their carers. Part 1 of the paper, in a separate volume, presents the legal framework, and Part 2, looks at issues involving high risk patients.
This paper describes the impact that learning about recovery has on mental health carers, exploring the implications of this research for UK social work and beyond. A steering group co-produced a training intervention on recovery that was delivered by the first author and a carer, both with experiences of recovery, to eleven carers. Mainly qualitative data, with supplementary socio-demographic data, were collected to evaluate the impact of this training. Thematic analysis was applied to the data. Findings suggest that being more ‘recovery-aware’ gives carers increased hope and optimism for the future. Awareness of the impact of caring upon the service user's life helps carers to promote recovery in their relative, and gain confidence in their own expertise-by-caring. Professional care is fundamental to recovery but needs to build on a partnership model. The carers evaluated the training as helpful, and valued its authenticity in being led by trainers with experience of recovery. Carers' expectations of professional practice are highlighted, with different approaches discussed that support effective carer involvement in their relative's care. Recognition of carers' expertise-by-caring demands a new approach to mental health care, with significant implications for British social work practice.
Background: Diabetes, a metabolic disorder, has reached epidemic proportions in developed countries. The disease has two main forms: type 1 and type 2. Disease management entails administration of insulin in combination with careful blood glucose monitoring (type 1) or involves the adjustment of diet and exercise level, the use of oral anti-diabetic drugs, and insulin administration to control blood sugar (type 2).
Objective: State-of-the-art technologies have the potential to assist healthcare professionals, patients, and informal carers to better manage diabetes insulin therapy, help patients understand their disease, support self-management, and provide a safe environment by monitoring adverse and potentially life-threatening situations with appropriate crisis management.
Methods: New care models incorporating advanced information and communication technologies have the potential to provide service platforms able to improve health care, personalization, inclusion, and empowerment of the patient, and to support diverse user preferences and needs in different countries. The REACTION project proposes to create a service-oriented architectural platform based on numerous individual services and implementing novel care models that can be deployed in different settings to perform patient monitoring, distributed decision support, health care workflow management, and clinical feedback provision.
Results: This paper presents the work performed in the context of the REACTION project focusing on the development of a health care service platform able to support diabetes management in different healthcare regimes, through clinical applications, such as monitoring of vital signs, feedback provision to the point of care, integrative risk assessment, and event and alarm handling. While moving towards the full implementation of the platform, three major areas of research and development have been identified and consequently approached: the first one is related to the glucose sensor technology and wearability, the second is related to the platform architecture, and the third to the implementation of the end-user services. The Glucose Management System, already developed within the REACTION project, is able to monitor a range of parameters from various sources including glucose levels, nutritional intakes, administered drugs, and patient’s insulin sensitivity, offering decision support for insulin dosing to professional caregivers on a mobile tablet platform that fulfills the need of the users and supports medical workflow procedures in compliance with the Medical Device Directive requirements.
Conclusions: Good control of diabetes, as well as increased emphasis on control of lifestyle factors, may reduce the risk profile of most complications and contribute to health improvement. The REACTION project aims to respond to these challenges by providing integrated, professional, management, and therapy services to diabetic patients in different health care regimes across Europe in an interoperable communication platform.
This guide considers the potential of assistive technology to contribute to the care of people with dementia in the community. It has been written by members of the ASTRID project, involving the UK, Norway, the Netherlands and Ireland. It contains an introduction to the project, an account of technology in action, discussion of how to incorporate technology in a needs assessment, how to obtain and use assistive technology, and a review of ethical issues.
The UK’s 290,000 young carers aged 16 to 24 often fall into the gap between adults’ and children’s services. Researcher Alison Petch reports
This paper reports on interviews with 30 carers of working age in north-west England. Respondents revealed a general dissatisfaction with government initiatives and policy. The findings suggest that in the main either the policy, or its implementation at grassroots level, or both have little impact.
Prostate cancer demonstrates particular characteristics and potential stresses for both patient and partner, yet its consequences for the couple are often inadequately addressed in the clinical setting. One-to-one interviews have shown areas of partner need but do not address the dynamic of the couple which itself holds implications for clinical practice. The participation of nine out of a possible 15 women in interviews with men taking part in a study of information needs suggested the extent of involvement by partners in prostate cancer. Secondary analysis of the verbal interaction and thematic content of the interviews authenticated the representation by members of the couple of the struggle against cancer as a shared experience. The women were shown to exercise authority, accepted by men in relation to illness-related issues and assumed responsibility for the management of information, care and the continuation of normal day-to-day life. Findings suggest a model of partner activity in prostate cancer conceptualized as ‘maintaining control over illness’. In the clinical setting, attention to the interaction between partners may facilitate appropriate communication strategies by health professionals, leading to more effective information exchange. Encouragement of the attendance and involvement of partners in the planning of care would support their contribution.
Dear Editor, For too long, the needs of young carers have fallen between the growing gap that separates adults’ and children’s services. Recent news coverage has once again highlighted the needs of these children but it is time to move forward and look at implementing solutions.
A letter to the editor that offers a look on the needs of young carers is presented.
To date, little is known about carers’ experience of using online services and information. Data are reported from the Carers Online national postal survey of 3,014 adult carers and from an assisted access study involving 60 other adults who had been given training and cost-free Internet access at home. Half of the survey respondents reported having used the Internet on at least one occasion for a range of purposes related to both caring and other aspects of their lives. Major barriers to use identified by both users and non-users included lack of access to equipment and the Internet, difficulties with equipment and systems, cost, limitations on time, and lack of interest and skill. Fourteen per cent of the whole sample said that nothing would encourage them to use the Internet. All of the assisted access group used the Internet for a similarly wide range of purposes. Key benefits identified included convenience, flexibility, speed and range of information available, while problems with equipment and systems and time constraints were major barriers to effective Internet use. Findings suggest that while direct Internet access has some benefits for some carers, it should currently be only one of a range of ways of meeting their information needs.
Reports on the launch of ASTRID ( A Social and Technological Response to meeting the needs of Individuals with Dementia and their Carers) a European project funded under the Telematics Programme, involving the UK, Norway, Netherlands and Ireland. It aims to research and promote the use of assistive technology, a broad term which covers anything from simple devices for individuals to whole systems of adapting housing.
Care and support is something that everyone in this country will experience and be part of at some point in their lives. Some people have impairments from birth, or develop an impairment or mental health condition during their working life, and use care and support to maintain active and independent lives. Many, as they become older, become more frail and rely on care and support from others. As the Prime Minister’s Challenge on Dementia has already shown, we are committed to improving the lives of people with care needs. This report, and the White Paper and draft Care and Support Bill published alongside this report, are about how we provide high quality care and support for all.
An evaluation was conducted of voluntary sector family support workers (FSWs) working with families of schizophrenia sufferers. FSWs completed a diary schedule and interviews were conducted with 15 co-professionals from the FSWs' multi-disciplinary teams and 62 carers from FSWs' caseloads. Carers' problems were assessed using the burden component of the Social and Behavioural Assessment Schedule and the Lancashire Quality of Life Profile. Carers were asked about the type of support received and their satisfaction. The findings revealed the considerable pressures of caring and highlighted the value perceived by both carers and coprofessionals of the FSW as a counselling, listening, information and advocacy resource. The diary study revealed that FSWs spend 40% of their time providing emotional and/or practical support. The impact of this was suggested by the superior ratings of quality of life and lower burden scores among carers with whom the FSW had longer-term involvement.
The experience and construction of caring in 50 informal cancer carers, 35 women and 15 men, was examined using a critical realist approach and a mixed method design. Women reported higher rates of depression, anxiety, unmet needs and burden of care than men. No gender differences were found in time spent care-giving, suggesting that gendered roles are implicated in distress and coping. Semi-structured interviews with 13 carers were used to identify gender differences in caring, analysed using positioning theory. Women described being positioned as all encompassing expert carers, expected to be competent at decision-making, a range of physical caring tasks, and provision of emotional support for the person with cancer. The consequences of this positioning were over-responsibility and self-sacrifice, physical costs and overwhelming emotions, which were self-silenced. In contrast, men carers positioned caring as a competency task which they had mastered, and which provided them with satisfaction, with the emotions of the person with cancer, or their own emotions, being negative aspects of caring. It is concluded that cancer caring is tied to gendered constructions and expectations, with considerable implications for psychological well-being and coping, and for carer support services, which need to take gender issues on board.
Decisions made on behalf of people with a learning disability and their families are often made without any input from the people they affect the most. Mencap's 'Listen and Learn' consultation programme was developed to find what is important to people with learning disabilities. The consultation used surveys, focus groups and interviews with people with learning disabilities, their family members or carers, Mencap members of staff and leaders of local Mencap groups. The results of the consultation are briefly discussed under the following themes: early years and childhood; making decisions about where to live, jobs and money; support for the whole family; healthcare; participation; staying safe; and relationships. Mencap intend to use the results to inform its work and planning over the next five years.
People with terminal diagnoses are increasingly encouraged to stay at home for the trajectory of their illness. Consequently, relatives and friends are progressively undertaking the informal carer role more frequently in conjunction with formal palliative care teams. Although there is international literature on the efficacy of and satisfaction with publicly funded palliative homecare, to date, there is scant literature reporting satisfaction with privately funded palliative homecare especially in Australia. Survey and focus group methods were used to explore carers’ levels of satisfaction with a private Australian palliative homecare service and to uncover unmet carer needs. There were 300 (41.7%) responses to the survey. Three focus groups were conducted, separately comprising current carers, past carers and palliative homecare staff. While there was a high level of satisfaction with the service generally, carers identified a lack of knowledge about aspects of the illness and treatment course. A desire to have time with nursing staff independent of the patient, including continued contact after the death of the patient, was also expressed. Themes relating to service delivery concerned lack of continuity of attending nursing staff and a perceived inadequate number of service visits. These findings were similar to results reported in the literature for publicly funded services. Therefore interventions used in the public sector to meet carer needs are likely to be successful if applied in the private sector.
Background As part of a UK programme of work focusing on older people with intellectual disabilities, the circumstance of those who reside in generic services for older people were investigated.
Materials and methods Questionnaires were sent to 2570 residential and nursing homes in 53 local authorities across the UK.
Results Five hundred and thirty returned questionnaires identified 215 people with intellectual disabilities currently living in 150 homes. They were significantly younger than the other residents, and were placed in these homes more often because of organizational change or the ageing/death of a family carer, rather than any changes in their own needs. Several potential indicators of a low quality of life were identified, including limited opportunities to get out, to access day services, to have contact with family or friends and to receive input from professionals outside the home.
Conclusions Attention needs to be given both to people with intellectual disabilities already residing in older people's services and to the prevention of further inappropriate placements.
Informal carers are central to the achievement of end of life care and death at home and to policy aims of enabling patient choice towards end of life. They provide a substantial, yet hidden contribution to our economy. This entails considerable personal cost to carers, and it is recognised that their needs should be assessed and addressed. However, we lack good research evidence on how best to do this. The present position paper gives an overview of the current state of carer research, its gaps and weaknesses, and outlines future priorities. It draws on a comprehensive review of the carer literature and a consensus meeting by experts in the field. Carers’ needs and adverse effects of caregiving have been extensively researched. In contrast, we lack both empirical longitudinal research and conceptual models to establish how adverse effects may be prevented through appropriate support. A reactive, “repair” approach predominates. Evaluations of existing interventions provide limited information, due to limited rigour in design and the wide variety in types of intervention evaluated. Further research is required into the particular challenges that the dual role of carers as both clients and providers pose for intervention design, suggesting a need for future emphasis on positive aspects of caregiving and empowerment. We require more longitudinal research and user involvement to aid development of interventions and more experimental and quasi-experimental research to evaluate them, with better utilisation of the natural experiments afforded by intra- and international differences in service provision.
The majority of people would prefer to die at home if assured of high quality care and proper support for their families and informal carers. Home-care workers play a vital role in enabling patients to be cared for in their own homes; however, there is a lack of research on their role, focusing specifically on palliative and end-of-life care. A broad literature search was undertaken as part of a research study to explore the role of home-care workers in palliative and end-of-life care in the community. Key questions for the review included: exploring the role of home-care workers; factors that affect this role and examining training and support needs of home-care workers in providing palliative: and end-of-life care in the community. Positive aspects of their contribution were identified in terms of providing physical and social support, and having a key role to play in caring for patients at home. However, several studies highlighted negative aspects of the role, including limited availability of services, lack of continuity of care, time constraints, lack of flexibility and poor quality of communication with other services.
Italy has one of the highest percentages of older people in Europe, a trend likely to increase faster than elsewhere alongside greater disability. Family support is also weaker through demographic developments and greater female participation in the labour market, and public policies for frail older people are underdeveloped with wide regional variations. The national scheme, the indemnita di accompagnamento (companion payment), is paid to approximately 7.3% of severely disabled people over 65 based on assessment of need. Private care is much greater than public provision of personal services, mainly supplied by individual workers rather than organisations. 'Routed wages' comprise the companion payment of which there are further details relating to funding, target, admittance, purpose and amount, and also local payments for care supplied by regional authorities and municipalities, with the same details listed. Local payments are increasingly widespread, mainly in the north and centre of Italy. There are several [...]
This paper presents data from a cross-sectional survey of 3014 adult carers, examining use of the Internet and factors associated with it. Carers recruited from the databases of three local authorities and other carer organisations within their geographical boundaries and that of Carers UK, a national carers organisation, were sent a postal questionnaire (response rate: 40%). A comparison of our data with national data on carers suggests some under-representation of men and younger adult carers and some over-representation of those who had been caring for long periods and those with substantial caring responsibilities. Two measures of Internet use were used and are presented in this analysis: previous use (ever used vs never previously used) and frequency (less than once a week vs once a week or more). Bivariate analyses identified patterns of Internet use and socio-demographic and socio-economic factors and caring circumstances associated with them. Factors significantly associated with each measure of Internet use were entered into direct logistic regression analyses to identify factors significantly associated with each measure. Half (50%) of all carers had previously used the Internet. Of this group, 61% had used it once a week or more frequently. Factors significantly associated with having previously used the Internet were carer's age, employment status, housing tenure and number of hours per week they spent caring. Frequency of Internet use was significantly associated with carer's age, sex, employment status and number of hours spent caring. Our study suggests that a significant number of carers may not currently be Internet users and that age, gender, socio-economic status and caring responsibilities shape Internet use in particular ways. Given the targets set by government for the development of online services, it is important to address the digital divide among carers and to continue to develop other services and information systems to meet the needs of those who do not access the Internet.
This was published under the 2010 to 2015 Conservative and Liberal Democrat coalition government
Better support for working carers would give businesses and the UK economy a much needed boost and would save taxpayers £1.3 billion a year, according to a new report published today.
The delivery of services and benefits to people supporting older and disabled relatives and friends depends largely on their identification within constructs of ‘care-giving’ and ‘carer’. Those who are married or living with a partner may be particularly resistant to adopting the identity of ‘care-giver’ or ‘care receiver’. This paper investigates the circumstances of couples and their adoption of carer identities, drawing on a study of the financial implications of a partner's death. That study was based on over 750 couples where one partner died, drawn from the British Household Panel Survey, and separate qualitative interviews with people whose partner died in the previous two years. The findings show that carer self-identification was influenced by the partner's health-care needs and service contacts, including welfare benefits receipts. None of the socio-demographic factors considered was statistically linked to whether people described themselves as providing care for their partner, unless there was an underlying association with the partner's health-care needs. The findings underline the problems of using self-reported identities in surveys and estimates of take-up of services and benefits, and the difficulties of delivering entitlements to people who care for their partner at the end-of-life. A challenge for policy makers is how to move beyond formal categories of ‘carer’ and ‘care-giving’ to incorporate inter-dependence, emotional commitment and the language of relationships in planning support for frail older people.
With the growing burden of chronic illness affecting aging populations, rural health systems are faced with unique challenges to support and promote health in their communities. The Yarmouth Stroke Project was a 5-year initiative aimed at improving health care services for stroke survivors in rural Nova Scotia, Canada. A needs assessment indicated a lack of support to self-manage stroke during community re-integration. The needs reported by stroke survivors and their caregivers included informational and emotional support. A logic model approach was used to frame program planning leading to the design of two low-cost interventions. The first, a Community Resource Guide, was developed to address informational needs and enable stroke survivors to access community-specific resources. The second intervention, designed to address the emotional support needs of stroke survivors and their caregivers, involved collection and publication of local narratives. The stories described the experiences of community members affected by stroke, offering practical knowledge and messages of hope. The resource guide and stories represent two low-cost strategies for supporting and promoting the health of people living with stroke in rural settings.
This was published under the 2010 to 2015 Conservative and Liberal Democrat coalition government
Ministers have launched a series of pilots exploring ways to help carers balance work with their caring responsibilities.
This small-scale survey explored how effectively young carers were identified by councils and their partners. It also examined the assessment and delivery of services for young carers and their families. It drew on evidence from visits to eight council areas, focus groups with young carers and meetings with those who provide young carer support services
In this study, based on longitudinal data, we investigate whether Japanese middle-aged men and women become less likely to have a job and whether their sense of well-being decreases when they have a family member who needs care. We find a consistent negative impact of having a family member who needs care on employment, but no impact on subjective health and life satisfaction. Further, the differences-in-differences (DID) estimation, based on both unmatched and matched data, shows that the Long-Term Care Insurance (LTCI) introduced in 2000 did not mitigate the adverse impact on the probability of being employed.
This article aims to provide a brief review of the literature with regard to the impact of lung cancer on patients and their informal carers. Compared to other types of cancer, the distress associated with lung cancer has been found to be the most intense. Rather than focusing on symptoms in isolation recent emphasis regarding the symptom experience has been on symptoms clusters, as understanding these clusters may improve the management of ongoing and unrelieved symptoms. However, the disparities in methodology are significant barriers to producing comparable results, although recent efforts have been made to address these. Whilst research into symptoms has enormous potential for the management of symptom clusters, it needs to move away from the essentially reductionist stance which currently dominates and broaden its scope to one that acknowledges the complexity of the experience of symptom clusters from the perspective of the patient and their informal carer. Poor management of symptoms complicates patient care and potentially contributes to the heavy burden which often falls on family caregivers, especially as the disease progresses. The majority of studies focus on the experiences of primary care providers, most often the partner/spouse. Such studies have shown that spouses of patients with lung cancer exhibit significant distress and lower levels of quality of life than the general population. Research also indicates that significant others go through a transition process due to changes brought about by the diagnosis of lung cancer and struggle to endure and overcome difficulties and distress. Significant others were seen to suffer during this process of transition and experienced altered relationships. Clinicians working with patients suffering from lung cancer and their carers should intervene to enhance their quality of life from diagnosis, during the disease trajectory and during bereavement. Interventions need to be developed to support both patients and carers.
Reports on a study which aimed to explore the roles and support needs of carers whose relative is placed in long-term care; identify the range and types of services available; and explore was to support carers more effectively. It draws on evidence from a pilot study conducted in 2002/03 in one area of South East England, and a supplemental literature review.
This study investigates whether men and women in caring occupations experience more negative job-related feelings at the end of the day compared to the rest of the working population. The data are from Wave Nine of the British Household Panel Survey (1999) where respondents were asked whether, at the end of the working day, they tended to keep worrying or have trouble unwinding, and the extent to which work left them feeling exhausted or “used up.” Their responses to these questions were used to develop ordinal dependent variables. Control variables in the models include: number of children, age, hours worked per week, managerial responsibilities and job satisfaction, all of which have been shown in previous research to be significantly related to “job burnout.” The results are that those in caring occupations are more likely to feel worried, tense, drained and exhausted at the end of the working day. Women in particular appear to pay a high emotional cost for working in caring occupations. Men do not emerge unscathed, but report significantly lower levels of worry and exhaustion at the end of the day than do women.
Direct payments, which allow users to arrange their own care and services instead of receiving them directly from local councils, can be made to parents and carers aged 16 or over. This includes people with parental responsibility for a disabled child. This guide offers advice to people who are thinking about or who are already getting direct payments from their local council social services department.
Summary: The evaluation of a project instigated by a voluntary group provided an opportunity to investigate the benefits of holiday breaks to both carers and participants. Feedback was obtained from over 100 people with intellectual disabilities through individual and group interviews, as well as from their carers using self-completed questionnaires.
Findings: Overall, the breaks were thoroughly enjoyed by the project members, providing them with a range of activities and leisure pursuits in the company of their friends and, on certain breaks, with non-disabled people as well. Carers reported more benefits to their relative in the later years of the project and became more willing for their relative to attend.
Applications: Three main issues are discussed: the use of mainstream settings and services, rather than specialist facilities, to provide short breaks; how best to encourage other carers of people with more significant needs to avail themselves of these opportunities; and ways of improving the social and leisure networks of people living with families so that the benefits of the ‘holiday’ experience could be recreated more locally and more frequently.
Background: Young people below the age of 18, whose lives are affected by looking after a relative with a disability or long-term illness, are called young carers. Evidence based family oriented support for young carers and their families in Germany is currently being developed. To allow for scientific evaluation, an outcome criterion needs to be chosen. Until today, there are no assessment instruments available, which focus on young carer's specific demands and needs. As HRQOL seems to be an adequate alternative outcome criterion, an integrative review of the literature was carried out to verify this assumption. Methods: The aim of the integrative review was to get information about a) the concept and the common definition of HRQOL in children, b) preferable HRQOL assessment techniques in children, and c) the relevance of HRQOL measures for the population of young carers. An additional aim of the review was to give advice on which instrument fits best to assess young carer's HRQOL in Germany. Searches were conducted in PubMed in order to obtain papers reporting about a) the development or psychometric assessment of instruments measuring HRQOL in children and adolescents up to the age of 18, and b) on the conceptual framework of HRQOL in children. Results: HRQOL is a multidimensional construct covering physical, emotional, mental, social, and behavioural components of well-being and functioning as subjective perceived by a person depending on the cultural context and value system one is living in. Young carer's problems and needs are well covered by these common domains of HRQOL. Since no specific HRQOL-measures are available to address young carers, a generic one has to be chosen which a) has been created for use in children, b) allows self- and proxy-report, and c) has good psychometric testing results. Comparing four generic measures with currently best published psychometric testing results, items of the KIDSCREEN cover young carer's specific problems most accurate. Conclusion: The KIDSCREEN questionnaires seems adequate to evaluate the intervention as their items cover young carer's needs and problems most accurate.
Background. Government health care policy urges service providers to involve service users in the decision-making process. Research studies have recommended changes to current health care practice to facilitate this involvement. However, carers’ organizations continue to highlight a gap between policy and practice in relation to involvement.
Aim. The aim of the study reported on in this paper was to investigate involvement in a specific health care context with a view to identifying both opportunities for change and practical, realistic ways of bringing about that change. This was a qualitative case study using a case study design. The field site selected was a respite and assessment (23 bedded) ward within the Psychiatric Unit of a hospital specializing in the care of older people. Informal carers (n=20) and members of the multidisciplinary team (n=29) were interviewed about their views and experiences. The interviews were audiorecorded and transcribed. Family meetings, multidisciplinary team meetings and ward routines were the focus of non-participant observation. Field notes from these observations, together with the interview data were analysed using constant comparative method.
Results and Conclusions. The reported experiences of carers in this study highlighted four markers of satisfactory involvement: feeling that information is shared; feeling included in decision making; feeling that there is someone you can contact when you need to; and feeling that the service is responsive to your needs. The majority of carers felt dissatisfied with the level of involvement. The situation we found echoed that found in other studies, i.e. the majority of informal carers (henceforth ‘carers’) interviewed were dissatisfied with the level of their involvement. However, our investigation, in which the views of health care professionals as well as those of carers were sought, provided invaluable insight into why this might be the case. Two main sources of difficulty were found: hospital systems and processes, and the relationship between nursing staff and carers. The argument made is that practitioners themselves must notice and challenge these barriers if carer involvement is to be facilitated.
Co-production is one of four elements which define successful change. The additional elements are defined as subsidiarity, leadership and system alignment1 . It is clear that engagement of people who use services, carers, families and citizens needs to be a core element of all four change principles for genuine and sustainable change to be achieved. This document provides a brief overview of the different approaches to co-production and acknowledges the individual voices and approaches which exist in the co-production sphere. The content has been co-produced by a range of partners2 who have shared their insights to highlight different aspects of co-production.
The document: • considers the policy context within which approaches to co-production are being developed, in particular, in the NHS White Paper, Equity and Excellence: Liberating the NHS, the proposed Public Health White Paper, A Vision for Adult Social Care: Capable Communities and Active Citizens and the Partnership Agreement between government and the social care sector, Think Local, Act Personal. • explores what we mean by co-production – it looks at definitions of co-production within health and social care and the principles underpinning co-production. • highlights different approaches to involving people, including: - ensuring diverse groups can participate, - collaboration with user-led organisations (ULOs), - engaging carers in co-production, - working with citizens to create Participatory Budgets, - working with small social enterprises, • summarises legal frameworks that support co-production, and • provides examples of where co-production has worked well at different levels of the social care system.
This paper also links closely with accompanying DH briefing papers Practical approaches to improving the lives of disabled and older people through building stronger communities, Practical approaches to safeguarding and personalisation and Practical approaches to market and provider development.
Recognition that informal cancer carers experience unmet needs and psychological distress has led to the development of a range of psycho-social interventions. The efficacy of such interventions is examined through a systematic review of the research literature, following National Health and Medical Research Council and Cochrane Collaboration guidelines. Of 13 level II randomised controlled trials (RCTs), only eight showed significant differences across groups, with moderate effect size. This included improvement in caregiver experience or appraisal of caregiving following psycho-education (two studies); improved sexual satisfaction, dyadic coping, relationship quality and communication, or reduced psychological distress, following couple counselling (4); reduced distress following family grief therapy (1); and reduction in distress in bereavement following home palliative care (1). Level III and IV studies were also reviewed, reporting positive effects of psycho-education (5), problem solving (3), an arts intervention (1) and a support group (1). However, methodological concerns limit the generalisability of findings of level III and IV studies. It is concluded that interventions should target those most in need of support; recognise specific needs of carers across cancer type and stage, gender and relationship context; be theory based; and evaluations should utilise RCT designs with outcome measures appropriate to the specific aims of the intervention, rather than global measures of distress.
Needs assessments are widely used in the field of aging, and are considered valuable tools for planning service responses to unmet and undermet needs of older adults. This article describes a comprehensive needs assessment of Bermuda's older population and presents some of its findings to illustrate concerns about needs assessments that emerged from this experience. We suggest that even when needs assessments are carefully planned and adhere to generally recognized best practice principles, they may not be able to fully provide desired information. A revision of key assumptions about needs assessment is offered for researchers, planners, and community workers.
The aim of this research was to develop a conceptual framework that would help to collect and understand the information needs of a target community. Even though many information behavior frameworks already exist, they tend to focus on different aspects of the person and their interaction with information. It was proposed that a synthesis of the existing frameworks could lead to one comprehensive framework. Previous research was analyzed and an initial framework defined. It was piloted, adapted, and then applied to data on informal carers, who are people caring for another person, generally a relative, for more than 14 hours per week, and who are not paid for it. The data stemmed from 60 interviews that were transcribed and coded. This paper presents the data on informal carers and their information experience using the final framework. It serves to demonstrate how the framework sensitizes the researcher to certain types of significant data, enables the organization of the data, indicates the relationships between different types of data, and, overall, helps to provide a rich picture of the target community's information needs. In conclusion, the paper discusses the differences and advantages of the framework in relation to previous work, the limitations of the study, and possible further research.
This report documents the findings of a two year study looking at the impact of the Carers (Recognition and Services) Act 1995 in four local authority social services departments in northern England. The work was funded by the Department of Health under the Outcomes for Social Care initiative. We began the study in November 1997, two years after the full implementation of the Carers Act. The specific research questions the study addressed were: 1. what are the results of national policy in terms of local policy and practice in selected authorities? 2. what are the results of local policy and practice from the carer=s point of view in terms of assessment under the Carers Act, services and outcomes? The study=s findings will help establish the significance of the Carers Act for adult carers, as well as yielding recommendations and good practice points for those staff in local authorities who are responsible for implementation. At the same time, the results are of wider interest, for instance the research can make a contribution in particular to the implementation of the Carers and Disabled Children Bill (currently making its way through parliament), the National Strategy for Carers (DH, 1999a), and any future policy developments on carers= issues.
Adult's decision to care for aging family members has an aggregate effect on public income support programs as well on as health care services and costs. Families have continuously been the primary source of support and care of elderly members. It is estimated that adult children constitute 41.3% of all informal caregivers (Wolff & Kasper, 2006). However, recent demographic trends have changed the landscape of parental caregiving by placing unprecedented levels of competing demands for care, potentially limiting the availability of adult children to provide parental care. This examination explores parental care behavior in four European countries (Norway, England, Spain, and Germany) and Israel, emphasizing a potential trade-off between care for offspring and care for aging parents.
Family carers are a major source of help and assistance to the persons they provide care for. They are also major contributors to the welfare system, balancing the national health care expenditure. Increasing attention, in research as well as government policy, is being paid to their role as informal caregivers. Support to family carers seems to be a new ‘buzzword’ in Swedish Government policy. However, supporting family carers may prove to be a more complex endeavour than one initially might be led to believe. Support could here be understood as any services, assistances, education, information, attitudes, and lay or professional person's provision for the benefit of the family carer. The aim of this systematic review was to identify modes of, and scientific evidence on, support for family carers of cohabiting elderly persons. The method followed a seven-step model: a focused research question was formulated creating a base for deriving search words and inclusion and exclusion criteria for studies. Systematic database searches identified several studies some of which were retrieved, critically appraised and classified by two independent reviewers. A total of 26 articles were finally included, revealing that family carers fear social isolation and wish to network in groups with peers, either for social or for learning needs purposes. Family carers also desire respite care. However, it is unclear whether they actually benefit from any of the above or how service provision should be attempted.
Background There is a lack of instruments to measure the needs, stigma and informal care of people with schizophrenia that take account of sociocultural variation and patients' and formal and informal carers' opinions and experiences. Aims To develop questionnaires to measure stigma, needs and informal (non-professional) care for people with schizophrenia. Method We undertook the study in seven countries and in English, Spanish and Portuguese. We first held focus group discussions with patients, formal carers (professionals) and informal carers (family and friends) in Spain, the UK, Argentina, Brazil, Chile and Venezuela to elicit the main dimensions of needs, stigma and informal care. We then held nominal group discussions about these dimensions with patients, family members and professionals in Spain, Portugal and the UK, to develop the instruments. Results Three hundred and three people participated in 46 focus groups and results were discussed in three nominal groups, each involving eight participants. Three instruments were developed in this iterative process: needs for care (46 items), stigma (38 items) and informal care (20 items). Conclusions These instruments are based on service users' and carers' views and experiences and have cross-cultural validity. They will have application in assessment of outcomes for people with schizophrenia and their families.
Purpose – Through consultation with people living with dementia and carers, this paper aims to identify skills that patients and carers feel need to be developed in the workforce. This work is part of a project to develop competencies for the West Midlands dementia workforce.
Design/methodology/approach – People living with a dementia and carers were contacted through cafés, a carers' group and memory group, and two people contributed interviews to the analysis. All materials were analysed qualitatively using thematic analysis.
Findings – Feedback was received from 69 individuals. In total, six major themes were identified: knowledge about dementia, person centred care, communication, relationships, support and helping people engage in activities.
Originality/value – It is argued that people living with dementia and carers bring unique and valuable perspectives to an analysis of the skills of the dementia workforce, which grounds the required skills in the relationship between the worker and the person and family they are working with. This different emphasis needs to be considered and addressed throughout dementia training and education.
The aim of this study was to explore the needs of carers of men with prostate cancer and to identify barriers and enablers to meeting these needs. Carers were recruited to focus groups or interviews. These were recorded, transcribed and analysed by two researchers using Nvivo QSR6 and the Framework approach to index, chart and analyse data to identify emergent themes of the needs of carers, and barriers and enablers to meeting these needs. Fifteen carers took part in focus groups and 19 were interviewed. Carers' needs varied and were often unmet because of barriers to existing services. Carers needed: information; emotional support; practical support; effective medical care for the patient. Barriers to carers meeting their needs included: lack of awareness of sources of help; lack of understanding of information; reluctance to ask for help; prioritising the patient's needs. Enablers included better signposting to information and sources of support, and assessment of their needs. Interventions to address these needs should be developed taking account of the barriers and enablers identified here, and the experience of reported interventions for carers of other cancer patients. Carers should be offered an assessment to establish their needs and directed to appropriate sources of help.
This study compared the caring situation, health, self-efficacy, and stress of young (16-25) informal carers (YICs) supporting a family member with mental illness with that of YICs supporting a friend. A sample of 225 carers, assigned to a family group (n = 97) or a friend group (n = 128) completed the questionnaire. It was found that the family group experiences a lower level of support and friends experienced a lower positive value of caring. No other differences in health, general self-efficacy and stress were found. YICs endure different social situations, which is why further study of the needs of YICs, especially those supporting friends, is urgently needed.
This article presents an adaptation of the Family Management Style Framework (FMSF)—a well-established framework of family response to chronic condition care of children—to families caring for older adults with dementia. Using the FMSF to better understand how families manage dementia care can provide clinicians with insights on how to work effectively with families. Using data from interviews with eight female caregivers of older adults with dementia, this secondary analysis adapts the FMSF, and identifies new dimensions that apply specifically to families caring for older adults with dementia. The discussion draws comparisons between the family management of a child with chronic condition to management of an older adult with dementia. The article concludes with a discussion of how understanding how families manage care of an older adult with dementia informs assessment for management styles and the tailoring of interventions specific to family, caregiver, and older adult needs.
To address the risks to families of the availability of care for their older family members, this chapter explores the impact of different care systems on the way that relevant care actors contribute to the long-term care of older people. It focuses on how front-line professionals and formal/informal carers meet the needs of older people who are frail and disabled, since caring for older people has become one of the potential family risks in East Asia and many industrial countries in the West for a number of reasons. On the one hand, the rise in life expectancy and multiple disabilities means the number of older people requiring long-term care has increased. On the other hand, the decreased younger population with increased female employment calls into question the continued availability of family carers and requires support from public and formal carers to help them to care for their older family members for as long as possible.
A questionnaire survey was undertaken in a rural health locality to examine the delivery of dental/oral health care to service users. Results indicate general satisfaction wth dental services, with attendance rates for treatment similar to the general population. However, the majority of clients not receiving dental checks in the previous year lived in formal care settings, suggesting standards were no higher in professional care contexts. A shortfall in NHS provision, poor facilities and financial disincentives created problems of accessing general dental services (GDSs) and placed an increased demand on the community dental service (CDS). Information-exchange between carers and dental personnel, blurring of care responsibilties and low priority afforded oral care were key issues preventing integrated care. Poor knowledge about client dental needs and high dependency levels between carers and clients indicate that training should be initially targeted at community learning disability nurses (CLDNs). Arguably they are best able to detect problems, facilitate access to services and disseminate health information. Recommendations are made for promoting dental/oral health awareness, routine health checks and production of a teaching pack. Further research concerning carer knowledge and attitudes to oral care is indicated. © 2001 Sage Publications.
Research has demonstrated the benefits of telecare. It helps those with long-term needs live more independent lives, improves well-being, and enhances the quality of life. Yet little attention has been focused on the impact of telecare on unpaid carers who look after relatives with long-term care needs. This article examines the evidence from “A Weight Off My Mind: exploring the impact and potential benefits of telecare for unpaid carers”, and the ways in which telecare has impacted on carers, and how it has improved their quality of life. The potential benefit for carers were identified as: reducing pressure on carers; supporting carers in their supporting role; enabling carers to get a better night’s sleep; and giving carers peace of mind about the safety and well-being of the person being cared for. Telecare has also been instrumental in enabling carers to remain in paid employment, thereby maintaining family stability. Finally, telecare also had a positive impact on the relationship with the person [...]
Much of the literature on informal carers of cancer patients is quantitative and psycho-oncology based. This literature has established that cancer carers experience higher rates of stress, depression and anxiety than their non-caregiving counterparts, with younger female carers reporting higher rates of burden and unmet needs. The reasons behind this variation and variations in support preferences are poorly understood: some carers prefer support groups and others prefer practical support. This study takes a sociological approach to exploring carers' varied experiences. Longitudinal interviews were conducted with 32 carers of a spouse with cancers of varying stages and diagnoses in the Australian Capital Territory. Analysis, informed by the discretionary time literature, shows time-sovereignty illuminates much of the variation in carers' emotional experiences and support preferences. Carers with few competing commitments and less onerous caregiving responsibilities had time to experience and unpack the range of emotions associated with cancer, and reconnect with their spouse. These carers preferred emotion-focused support. In contrast, carers with multiple commitments had little time to themselves and viewed emotions as an indulgence. These carers preferred practical support. A time-sovereignty framework offers health and support professionals a means of understanding carers' varying needs and tailoring support services.
The influence of substance use on patient's needs and caregiving consequences has received insufficient research attention. We sought to determine whether patients with comorbid substance use have higher levels of need, anxiety, depression, and caregiving consequences than those of patients who do not use substances. A total of 520 patients participated, and those who used substances (n = 216) reported higher levels of unmet needs, anxiety, and caregiving consequences than did patients who did not use substances. Carers of patients who used substances also reported higher anxiety and more caregiving consequences. Very few patients were actively involved in treatment programs to reduce their substance use.
This study examined caregiver perceptions of mental health problems and counseling needs in low-income children with special health care needs (CSHCN). Interviewers collected data from 257 caregivers of CSHCN (61% males; 60% African American; Mean age = 8.4 years) attending six Midwestern inner-city health clinics. Measures included the Child Behavior Checklist (CBCL) and an investigator-designed questionnaire. CBCL T-scores indicated that 38% of CSHCN had a behavioral or mental health problem, but only 26% of caregivers perceived the need for treatment or counseling. CSHCN should be assessed and referred appropriately for behavioral and mental health problems during routine health care visits.
This article reviews current policies and their impact on carers' lives, and highlights the potential limitations of a more personalised approach to care. Using some key research findings and illustrative case studies, the article argues that we should build on the achievements of the personalisation reforms, but not limit our ambition to offering individuals more choice and control over their services. Instead, there should be a focus on individuals achieving ordinary life chances and families achieving emotional and financial sustainability. For people to experience a truly integrated response to their needs, professionals must be able to achieve integration not only across service boundaries, but also across their responses to inter‐linked individuals. Recognising this lessens the risk of offering care solutions that result in trade‐offs between one family member's independence and another's.
This report presents the new mental health strategy for Wales, covering people of all ages. It aims to address the needs of people with mental health problems or a mental illness, whilst also improving mental wellbeing. The strategy is intended to improve outcomes for service users, carers and their families. It encourages the "recovery and reablement" approach, which aims to help people live independently and achieve their full potential. The strategy builds upon current policy and incorporates the legal requirements of the ‘Mental Health (Wales) Measure’, as follows: chapter 1 states the intent to promote mental wellbeing and, where possible, prevent mental health problems developing; chapter 2 sets out how a new partnership with the public will be established, encouraging an understanding of mental health and mental illness, seeking to eradicate the stigma which can be associated with mental health; chapter 3 emphasises the value of a well-designed, fully integrated network of care; chapter 4 highlights that a range of factors in people’s lives impact on their mental health and wellbeing. Chapter 5 brings Together for Mental Health to a conclusion with an overview of how we make the vision a reality.
The government response to the consultation on draft regulations to support young carers and their families. It includes a summary of the responses received and the list of organisations that responded to the consultation. The public consultation included two online forums held with young carers and with young adult carers respectively. The draft regulations set out: the matters to which a local authority must have regard in carrying out a young carer’s needs assessment; the manner and form of a young carer’s needs assessment; the matters which a local authority must take into account when carrying out a young carer’s needs assessment; and, a definition of the term ‘whole family approach’.
Aim. This paper is a report of a study to explore the development of specialist staffing for older people in six case study sites in the United Kingdom.
Background. In the United Kingdom there has been some concern about the health care available to older people, leading to the development of a National Service Framework. A key theme of this framework is the development of specialist staff skilled in providing services tailored to the needs of older people.
Method. A soft systems methodology was used in 2004–2005 to carry out interviews with key people, including specialist nurses for older people, other service providers, patients and informal carers (n = 132) in six case study sites identified from a national questionnaire. Interviewees were asked to describe their perceptions of the development, its history and its impact.
Findings. The development of specialist nursing services seemed to be shaped by national policy drivers for service development, which may not have been directly linked to the needs of older people. The ideal qualities of a specialist nurse for older people were described by participants as including not only knowledge and skills, but also personal characteristics.
Conclusion. While progress has been made in establishing specialist posts, much remains to be explored about the roles of postholders, the qualities needed, and the support and preparation required. While advanced practice is a professional aspiration, a number of questions arise about the development of nursing as a self-directing profession in diverse international settings. Theories of specialist nursing practice also need to address the tensions between universal and local models and to consider theories about nursing older people.
Carers provide unpaid support to family or friends with physical or mental health problems. This support may be within the domain of activities of daily living, such as personal care, or providing additional emotional support. While research has explored the carer experience within the National Health Service in the United Kingdom, it has not focused specifically on carers of individuals with a diagnosis of borderline personality disorder (BPD). Eight carers for those with a diagnosis of BPD were invited to take part in two focus groups. The first carers’ focus group, entitled ‘The role of Mental Health services,’ produced four super-ordinate themes. The second carers’ focus, entitled ‘Experiences in the Community,’ produced six super-ordinate themes. It seems carers of those with a diagnosis of BPD are continuing to be overlooked by mental health services, and subsequently require more support to ensure their own well-being.
This chapter examines the impact of caring on the lives of young people (i.e. those under 18). The authors point to the difficulties in enumerating such carers. They estimate numbers in excess of 50,000. Although the issue of young caring is not new, research into the phenomenon is. The authors refer to the initial studies of the late 1980s and early 1990s. They focus on the work of the Young Carers Research Group (YCRG), established in 1992. The Group has an on-going work programme which aims to give young carers a voice, raise awareness and influence policy. The YCRG methodology centres on interviews with young carers. The authors highlight the advantages of this approach but also acknowledge its critics. They conclude that the 'child's voice' approach has been successful. Awareness is much increased and many YCRG recommendations have been translated into policy and practice. Cites numerous references.
People caring for someone with a mental illness finally have a right both to an assessment and to have their assessed needs met. The author explains how much difference this will make to carers and their loved ones.
Future of health in EU faces the triple challenges of ageing, fiscal restriction and inclusion. In the UK the number of aged people will increase to 6.6 million in the next 25 years. In Scotland, the group people 74+ are projected to increase most dramatically by 82% by 2035. That statistics show every day the needs of older people are growing and an increasing number of carers are required. Now the number of carers are around 10% of population of the UK. In next 25 years the population of carers will rise to 9 million. The current value of care is worth an estimated £119bn per year - considerably more than total spending on the NHS. Hence government searches for ways to reduce costs while maintaining quality of care. The full participation of informal carers in the co-production of health and care has the potential to play a significant role in the sustainability of health and care delivery. A pressing issue is how to coordinate this massive resource with the formal health and care system to enable true co-production of health and care. Increasingly e-health, is seen as the tool to re-shape healthcare systems. In particular, social media (SM) are seen as critical enabler for co-production.
Our study investigates the current and possible future for SM as an enabler of co-production in health and care. To achieve these aims two main sets of questions are asked: what are the current uses of SM in health and social care? How can SM be reshaped to enable health and care coproduction? We consider a typology of opportunities and limitations of SM for health and care: - Existing health and care service bundles with existing or new SM tools - New health and care service bundles with existing or emerging SM tools
So far we have: a) Characterised current uses of SM and have identified benefits (and risks) of SM for health and care by reviewing the literature; b) Identified coordination tools and social sensemaking as key emerging trends in the use of SM; c) Identified health and care integration as a key driver for service redesign and for the adoption of co-production and have begun to characterise the needs SM can meet in this context. d) And begun preparing to collect data through collaboration with the Living it Up Project (a sub-project of DALLAS study - Delivering Assisted Living Lifestyles at Scale, a £23 million partnership between the Technology Strategy Board and government departments, launched in June 2011) which is a programme aiming to support better health, wellbeing and active lifestyles in Scotland and is exploring new services and modes of cooperation
Aim. This paper is a report of a study to describe situations influencing next-of-kin caregivers’ ability to manage palliative care in the home.
Background. Palliative home care often involves major resources from next-of-kin, municipal and county personnel. Next-of-kin caregivers’ situation is depicted as so demanding and exhausting that it can affect their mental health and limit their ability to continue as a caregiver.
Methods. A qualitative study using the Critical Incident Technique was conducted. Nine next-of-kin caregivers from palliative home care were strategically chosen and data were collected using audiotaped interviews in 2005.
Findings. The analysis resulted in two main areas: ‘Maintaining control’ and ‘Losing control’. Next-of-kin caregivers wanted to maintain control over their lives by being continuously available 24 hours a day and by supporting and taking complete responsibility for all of the patient’s needs. They lost this control when professional assistance was lacking and they described feelings of inadequacy when their physical energy or time was insufficient. They felt incapable as the patient’s physical or mental persona metamorphosed or as serious symptoms developed that they could not control.
Conclusion. Next-of-kin caregivers and the patients must feel free to choose where palliative home care will be provided and that their choice at any time can be re-evaluated, due to insecurity or workload changes. When planning for palliative care, they should be informed that having only one caregiver reduces the chances of completing palliative care in the home.
All Wales People First has been actively involved in preparing this Statement on Policy and Practice for Adults with a Learning Disability. This has been a welcome opportunity for people with learning disabilities to get directly involved in policy making. We were able to give our very valuable viewpoint which reflects the desires, hopes, dreams, wants and needs of people with learning disabilities. Our involvement has come about through our membership of the Learning Disability Implementation Advisory Group that was set up by the Welsh Assembly Government following its response to the Fulfilling the Promises report. Many different groups, including parents, carers, and health, social services and education professionals, have been involved in producing this statement. It is a vision for everyone involved with learning disability. The Statement on Policy and Practice will help to make it more possible for people with learning disabilities to become included in community living and have more opportunities to develop our own lifestyles. We want to build bridges between us and the world out there and we see this as a two way process. We want people to understand us better and value us. We can make a valuable contribution to the community and we can help people in the community to recognise us as valued citizens. Making these links, would make the community safer for all
This paper is a report of a study conducted to identify the conditions that favour the relief of the burden of female caregivers of relatives with advanced dementia. Respite services are a response to caregivers' needs for rest. Although they are wanted and needed services, caregivers do not always have access to or use them. The need for a caregiver-centred approach to relieving the burden of care is a conclusion which respite researchers are increasingly reaching. The method was, grounded theory was chosen as the research strategy. Twenty-two female primary caregivers of relatives with advanced dementia participated in semi-structured interviews between November 2006 and May 2008 in Spain. Data collection was guided by the emergent analysis and ceased when no more relevant variations in the categories were found. The findings were, while having a rest is legislated as a right in civil and religious laws in family care in Spain, it should meet certain conditions that in the caregiver's eyes legitimate it. In the present study these were: (i) when there is no abandonment, (ii) when others are not harmed, (iii) when having a rest is obligatory and (iv) when having a rest is acknowledged. Conclusion. Many caregivers experience ambivalence over accepting respite. Nurses should assess caregivers’ situations and promote context-specific interventions and a relief of burden free from guilt. Exploration of the conditions that favour the relief of burden within other cultural and caregiver groups is recommended.
The National Carers’ Strategy Demonstrator Sites (DS) programme was developed by the Department of Health (DH) as part of the commitments made in the 2008 National Carers’ Strategy (HMG, 2008). The DS programme, delivered across England, comprised 25 partnerships. With a delivery period of 18 months, each site was expected to develop new, innovative services for carers, or to extend existing provision if effective arrangements were already in place. The programme focused on three areas of support: • Twelve Breaks sites aimed to measure the quality and effectiveness of a range of new approaches to offering breaks to carers. • Six Health Checks sites aimed to deliver annual physical health and / or health and well-being checks for carers. • Seven NHS Support sites aimed to explore ways of providing better support for carers in a variety of different NHS settings. The aim of the programme was for sites to develop and enhance the local support available to carers and, where possible, to measure the quality and effectiveness of the new provision. The national evaluation of the DS programme was commissioned to assess the extent to which these goals were achieved, with a particular focus on: mapping the Demonstrator Sites’ activities; assessing the effectiveness of their initiatives; examining the impact on carer health and well-being; outlining the cost of initiatives; and assessing the extent of carer engagement in the planning, delivery and evaluation of the programme.
Caring for a family member or friend can have major impacts on the personal life and wellbeing of carers. Identifying those who experience poor subjective wellbeing, factors that contribute to this, and ways in which services can be more effectively provided is essential in supporting carers in their role. This study surveyed carers from across New South Wales and found that carers of people with mental health issues reported poorer health and mental health themselves than any other group of carers, despite being more likely to access supportive services. The effectiveness of personal coping strategies employed by mental health carers is also discussed. Survey results raise implications regarding the support of mental health carers and their subjective wellbeing.
This Explanatory Memorandum outlines the background and purpose of the Carers Strategies (Wales) Measure 2010. The Strategy provides for the provision of information and advice to carers and for the effective involvement of local authorities with carers when making decisions about the provision of services to and for carers. Part 2 provides the Regulatory Impact Assessment of the measure.
An interactive toolkit, developed to support the implementation of the Social Services and Wellbeing (Wales) Act, which provides information and advice to support Local Authorities and Health Boards to undertake an assessment of care and support needs and carers' needs in their local area. The toolkit is in three main sections. Section one (the ‘What’ guide) looks at what is required under the Social Services and Wellbeing (Wales) Act, the benefits of carrying out an assessment, analysing the data, and what should be included in the report. Section two (the ‘How’ guide) covers project management, governance, partnership arrangements, and provides an outline plan of the 11 steps that should be incorporated into a project plan. Section three (the ‘Help’ guide) considers the individual component parts that make up the assessment. It provides links to resources and links to a supporting statistical data catalogue.
Original resource on the socialcare.wales website.
Reports on the results of studies on the role of young people as caregivers for family members. Needs of patients that have to be met; Extent of young caring generally; Concerns and worries of young carers.
Purpose: Stroke caregivers have been identified as a group at high risk for poor outcomes as a result of the suddenness of stroke and a potentially high level of care needed due to significant functional limitations of the patient. However, there is little research on the assessment of family members who will assume the caregiving role prior to patient discharge from rehabilitation. The purpose of this article is to delineate critical assessment domains identified by a subset of spousal stroke caregivers. Methods: Semi-structured interviews were conducted pre- and post-discharge from rehabilitation as part of a larger study that focused on identifying caregiver and stroke survivor needs as they transitioned home from inpatient rehabilitation. For this study, two semi-structured interviews with 14 spousal caregivers were analyzed using grounded theory methods. Results: Long-term stroke survivor outcomes were dependent upon the commitment, capacity and preparedness of the family caregiver. Twelve domains of assessment were identified and presented. Conclusions: A comprehensive, systematic caregiver assessment to understand the caregiver’s concerns about stroke should be conducted during rehabilitation to help the team to develop a plan to address unmet needs and better prepare family caregivers to take on the caregiving role.
Implications for Rehabilitation
Stroke is a sudden event that often leaves stroke survivors and their families in crisis.
The needs of stroke family caregivers are not often systematically assessed as part of inpatient rehabilitation.
Long-term stroke survivor outcomes are dependent upon the commitment, capacity and preparedness of the family caregiver.
Stroke caregiver assessment should include the commitment, capacity and preparedness to provide care, and the overall impact of stroke in order to develop discharge plans that will adequately address the needs of the stroke survivor/caregiver dyad.
BACKGROUND: Mental health services are required to take account of the needs of carers, yet little is known about how services affect carers.
AIMS: This paper explores the relationship between the user's mental health problems, the services received and the impact of caring on carers.
METHODS: Sixty-four carers were interviewed, measuring their experiences of care-giving, carer stress and the service user's level of impairment. A robust, composite measure of user severity was derived.
RESULTS: Carers were sometimes better judges than care co-ordinators of user impairment. Their experience reflected the independently rated severity of service users' problems. When carers were aware of care plans, they felt less negative about caring. Even in above-average mental health services, carers lacked information about: care plans, medication and complaints procedures.
CONCLUSIONS: This evidence can be used in allocating resources such respite care, family therapy and CBT to carers. These findings have implications for how mental health services might improve their provision for carers, for instance, involvement in care planning may help carers to cope.
There is a growing body of literature concerning the needs of informal carers, however, there is little relating to the needs of carers who are also university students. There are a number of publications concerning the difficulties university studies may cause and in particular the stress that some healthcare students endures when they undertake clinical placements. Being an informal carer has the potential to aggravate any difficulties students may have in the normal course of their studies.
The purpose of the study was to explore the experiences and needs of healthcare students who are also informal carers. An electronic survey (February 2010) of 3567 students identified 36 students who are also informal carers. Most were female, pre-registration nursing students, studying full-time and who cared for their physically disabled children, chronically ill parents or terminally ill grandparents. Most respondents spent over 6 h a day on informal caring responsibilities. The majority said informal caring had a negative impact on their studies.
An in-depth interview study was undertaken (April 2010) with ten students. Data themes identified in the analysis were; descriptions of being an informal carer, impact of caring on studying, sources of support and hidden lives. In the theme ‘hidden lives’ students highlighted that they did not want university staff to know that they were informal carers as they did not want ‘special’ treatment. It was theorised that this could be due to the stigmatisation sometimes attached to being a carer. The value of the study was that it was found that more targeted information about student support services is needed, to help students successfully complete their studies. This would be beneficial for universities too as students who leave early without successfully completing their programme have financial implications.
Background: Within the context of an exploratory case study, the authors assessed the perceptions of family caregivers about the decision-making process regarding relocating their relative and about the applicability of an interprofessional approach to shared decision making (IP-SDM). They also assessed perceptions of health professionals and health managers about IP-SDM.
Methods: From November 2010 to October 2011, we worked with one IP home care team dedicated to older adults (the case) from a large primary health care organization in Quebec City, Canada. We identified six of their clients who had faced a decision about whether to stay at home or move to a long-term care facility in the past year and interviewed their family caregivers. We explored the decision-making process they had experienced regarding relocating their relative and their perceptions about the applicability of IP-SDM in this context. Attitudes towards IP-SDM and potential barriers to this approach were explored using a focus group with the participating IP home care team, individual interviews with 8 managers and a survey of 272 health professionals from the primary care organization. A hybrid process of inductive and deductive thematic analysis was used and data were triangulated across all sources.
Results: Family caregivers reported lack of agreement on the nature of the decision to be made, a disconnection between home care services and relatives’ needs, and high cost of long-term care alternatives. Factors influencing their decision included their ability to provide care for their relative. While they felt somewhat supported by the IP home care team, they also felt pressured in the decision. Overall, they did not perceive they had been exposed to IP-SDM but agreed that it was applicable in this context. Results from the survey, focus group and interviews with health professionals and managers indicated they all had a favourable attitude towards IP-SDM but many barriers hampered its implementation in their practice.
Conclusions: The family caregivers in this study did not experience IP-SDM when relocating their relative. Added to results obtained with health professionals and managers, this highlights the need for an effective intervention targeting identified barriers to implementing IP-SDM in this context.
Family caregivers, who are patientsflrelatives and friends (hereafter called carers), play a significant and arguably most important role in enabling patients to make choices about their place of care during advanced disease and in the terminal phase. Relatively little attention has been directed towards identifying the needs of carers who find themselves in this position and what interventions (if any) might best support them in continuing to provide care to the patient during the illness and dying trajectory. What evidence there is suggests that while some aspects of caring are looked on positively, carers also experience challenges in maintaining their physical and psychological health and their social and financial wellbeing. One common recommendation is that respite facilities be provided. The purpose of this paper is to consider the definitions and assumptions that underpin the term ’respitefland its impact on the physical, psychological and social outcomes of carers in palliative care contexts. We conducted a review of the literature, which involved searching five electronic databases: Web of Science, Medline, CINHAHL, Cochrane Database System Review and Social Sciences Citation Index. The search identified 260 papers, of which 28 related directly to adult respite care in specialist palliative care. These papers were largely concerned with descriptive accounts of respite programmes, guidance on referral criteria to respite services or were evaluating the effects of respite on the patient rather than the impact on the carer. We did not identify any empirical studies assessing the effects of respite provided by specialist palliative care services on carer outcomes. There is insufficient evidence to draw conclusions about the efficacy of offering respite care to support carers of patients with advanced disease. We, therefore, draw on the wider literature on carers of adults with chronic disease to consider the impact of respite services and offer suggestions for further research.
Schools play an important part in the lives of children and young people who have caring responsibilities for a family member with an illness, disability, alcohol or other drug problem or mental health condition but many of these ‘young carers’ report difficulty in attending, achieving and participating in education. This qualitative research project aimed to gather young carers' views about school, the challenges they face in engaging with education and their peers, and ways that the system might better support others like them. It found that significant caring responsibilities, a lack of appropriate and responsive support services to meet family needs and a lack of awareness and understanding within the education system significantly reduced young carers' capacity to fully engage with their learning. Young carers in the study called for more assistance in caring for their relatives, more flexibility and responsiveness to their home lives within the design and delivery of education, and better processes for identifying and responding to the challenges they encounter in participating in the life of the school community.
Objectives: In a multi-site population-based study in several middle-income countries, we aimed to investigate relative contributions of care arrangements and characteristics of carers and care recipients to strain among carers of people with dementia. Based on previous research, hypotheses focused on carer sex, care inputs, behavioural and psychological symptoms (BPSD) and socioeconomic status, together with potential buffering effects of informal support and employing paid carers.
Methods: In population-based catchment area surveys in 11 sites in Latin America, India and China, we analysed data collected from people with dementia and care needs, and their carers. Carer strain was assessed with the Zarit Burden Interview.
Results: With 673 care recipient/carer dyads interviewed (99% of those eligible), mean Zarit Burden Interview scores ranged between 17.1 and 27.9 by site. Women carers reported more strain than men. The most substantial correlates of carer strain were primary stressors BPSD, dementia severity, needs for care and time spent caring. Socioeconomic status was not associated with carer strain. Those cutting back on work experienced higher strain. There was tentative evidence for a protective effect of having additional informal or paid support.
Conclusions: Our findings underline the global impact of caring for a person with dementia and support the need for scaling up carer support, education and training. That giving up work to care was prevalent and associated with substantial increased strain emphasizes the economic impact of caring on the household. Carer benefits, disability benefits for people with dementia and respite care should all be considered. Copyright © 2012 John Wiley & Sons, Ltd.
Outlines a research project undertaken in the Dartford and Gravesham area of north west Kent to explore the service-related needs of Asian older people with dementia and their carers. The study was conducted from February 2002 to January 2004, based at a local dementia care charity, and funded by the Mental Health Foundation. Qualitative approaches were used to collect data about existing services and the views and perceptions of key stakeholders including: 7 GPs, 32 health professionals and service managers, 7 carers and 230 members of the local Asian community.
In Portugal, individuals aged 50+ have an important role in the provision of co-residential care. This study aimed to rank Portugal relative to 15 European countries with regard to the prevalence of co-residential care (daily or almost daily personal care), and extra-residential help/care (household help and/or personal care) provided by individuals aged 50+, and determine the factors associated with the provision of these types of support in the Portuguese context. The study used data from the SHARE wave 4 project (2010–2011) and was based on an analysis of variance and logistic regression models. Portugal differs from other European countries, as it has the highest rate of co-residential care (12.4 %) and the lowest rate of provision of extra-residential help/care (10.8 %). It is concluded that the quality of life (QoL) of Portuguese co-residential carers is lower than the QoL of non-carers, but extra-residential help/care provided once a month or less has a positive impact on the QoL of the providers. Co-residential care and the provision of frequent extra-residential help/care (daily or weekly) were associated with a higher number of depressive symptoms. The results further showed that, in Portugal, co-residential carers and extra-residential helpers/carers have different socio-demographic, economic and health characteristics. This study demonstrates that it is important for scientific research to differentiate the type and frequency of informal support, since this can help us design policies to meet the specific needs of the various types of informal carers aged 50+.
The overall goal of the study reported in this paper was to examine differences in the perceived occurrence of abuse and neglect as between older care recipients, their family carers, and foreign home-care workers in Israel. Overall, 148 matched family members and foreign home-care workers and 75 care recipients completed a survey of abuse and neglect. Significant discrepancies in their reports of neglect were found, with the foreign home-care workers more likely to identify neglect (66%) than the older adults (27.7%) or their family members (29.5%). Although the rates of reported abuse ranged between 16.4 and 20.7 per cent and the differences were not statistically significant, the different parties assigned the responsibility for the abuse to different perpetrators. The independent variables that significantly associated with abuse and neglect also varied by the three groups of participants. The findings suggest that even with round-the-clock home care, the basic needs of many older adults are not met, and that many experience substantial abuse. The study emphasises the subjective nature of abuse and neglect, and suggests that more education about what constitutes elder abuse and neglect may lead to more accurate and consistent reports across reporting sources. Incorporating data from the various stakeholders may enhance the early identification of elder abuse and neglect.
Aim. The aim of this study is to describe the experience of caregivers of individuals who have had a percutaneous coronary intervention (PCI).
Background. Decreased lengths of hospital stay and an increased emphasis on chronic disease self-management increase the importance of carers in assisting in recovery and lifestyle modification.
Design. Cross-sectional dual-moderated focus group design.
Method. Three focus groups using a dual facilitation approach were held in the cardiac rehabilitation setting of a tertiary referral hospital in metropolitan Sydney. All sessions were audio recorded, transcribed and thematically analysed.
Results. Four themes emerged from the data: (1) a gendered approach to health, illness and caring; (2) shock, disbelief and the process of adjustment following PCI; (3) challenges and changes of the carer–patient relationship and (4) the needs of the carer for support and information. Issues emerging from this study parallel other findings describing the experience, yet provide new insights into the issues surrounding PCI.
Conclusion. These findings highlight the need for including carers in care planning and decision-making and providing them with support and resources.
Relevance to clinical practice.
This research considers the impact of having a religious faith on the cancer experience of patients and informal carers, focusing primarily on the association between faith and psychosocial needs. A questionnaire survey of 1000 patients in the north-west of England returned 402 completed questionnaires; around two-thirds of patients indicated they had an informal carer. Using logistic regression analysis, we examine the relationship between the importance of 48 needs and faith for 189 paired patients and carers, while controlling for the effect of eight socio-demographic and clinical variables. Patients with expressed faith identified fewer psychosocial needs than those without faith. In contrast, carers with expressed faith identified more needs than those without faith in relation to support from family and neighbours. Carers also needed more help with finding a sense of purpose and meaning, and help in dealing with unpredictability. Not surprisingly, both patients and carers with faith identified a greater need for opportunities for personal prayer, support from people of their own faith and support from a spiritual adviser. Various explanations of these differences between patients and carers are proposed. The crucial point is that one should not too readily assume that the cancer experience is shared in the same way by patients and carers. In understanding the faith dimension, one needs to consider both the spiritual and secular aspects of having a religious faith.
This ground-breaking report by Government, Employers for Carers and Carers UK, sets out the economic case for supporting the growing number of workers who also care for older or disabled relatives.
Background: At a time when health and social care services in European countries are under pressure to contain or cut costs, informal carers are relied upon as the main providers of long-term care. However, still little is known about the availability of direct and indirect support for informal carers across the European Union.
Methods: Primary data collection in all EU member states was supplemented with an extensive review of the available literature.
Results: Various forms and levels of support have been implemented across Europe to facilitate the role of informal caregivers. Financial support is the most common type of support provided, followed by respite care and training. Most countries do not have a process in place to systematically identify informal carers and to assess their needs. Policies are often at an early stage of development and the breadth of support varies significantly across the EU.
Conclusions: Policy developments are uneven across the member states, with some countries having mechanisms in place to assess the needs and support informal carers while others are only starting to take an interest in developing support services. Given the unprecedented challenges posed by population ageing, further research and better data are needed to capture and monitor information on informal carers, to help design adequate support policies and eventually to evaluate their impact across the EU.
The UK Government is concerned that women and men who care for disabled or sick relatives, or elderly people, and who also wish to take part in paid work should have increased opportunities to do so. However, many informal carers find combining work and care difficult; some may ‘choose’ to give up paid employment completely. The present paper draws on the findings from two projects to explore the extent to which the needs of employees with caring responsibilities are supported in the workplace. The two projects examined evidence from a study of informal carers assessed under the 1995 Carers Act, identified the difficulties which they face in their workplace and observed the strategies which they developed to help sustain the two roles. From this, a model of support for working carers was developed which includes leave policies, carer-friendly working arrangements, access to a (private) telephone, and supportive line managers and co-workers. This support model was tested on the employment policies of 13 employers to see how ‘carer-friendly’ they were. Most of the organisations studied were able to provide appropriate support for carers identified in the model. Questions were then raised about different aspects of carer-friendly working arrangements, including whether carers should receive any special treatment that is not available to their colleagues, the role of line managers, and the relationship between seniority and opportunities to combine work and care.
The multiple relationships involved in home-based end-of-life care have received little systematic analysis. As part of a focused ethnographic study examining client–caregiver–provider relational care experiences within the sociocultural context of home-based end-of-life care, this article describes the provision of end-of-life care to older adults with advanced cancer from the perspective of family caregivers. Data were collected through in-depth interviews (n = 16) with 4 family caregivers and participant observations in each of the 4 households over a 6- to 8-month period. Family caregiving in home-based end-of-life care was portrayed in this study as 3 dialectical relational care experiences: (1) prioritizing care recipient needs–ignoring own needs, (2) feeling connected–feeling isolated, and (3) juggling to manage–struggling to survive. Study findings suggest that the sociocultural context of end-of-life care is not conducive to quality care and provide several insights for future directions in nursing practice, policy, and research.
Carers have a pressing need to be directed to good sources of information, help and support. NHS organisations appear to be consulting with carers much less than the level envisaged in the National Strategy for Carers. There is still too much poor or indifferent consultation practice and service providers appear not to be following known good practice guidelines. Over eight out of ten carers said that caring had a negative impact on their own health. Almost nine out of ten reported that they feel stress, anxiety, depression or loss of sleep, due to being a carer. Carers also saw the sheer relentlessness of caring and its effects on their mental and physical well-being as being their biggest problems.
BACKGROUND: Little account has been taken of quality of life (QoL) among family carers of adults with an intellectual disability (ID) and family carers of adults with a mental illness (MI), particularly the female ageing carers' perceived stigma. We explore whether there are differences in the significant predictors of female ageing family carers' QoL between family carers of adults with ID and family carers of adults with MI and aim to examine the effect of these differences in stigma on carer QoL between the two groups.
METHODS: A structural survey interview was administered to 350 female family carers supporting persons with ID and 66 female carers supporting persons with MI; the carers were aged 55 years and older, and the interviews were carried between July 2006 and April 2007 at the carers' homes in a county in Taiwan. The survey package contained standardised scales to measure the carer's stigma, social support, QoL and health as well as adult and carer socio-demographic data.
RESULTS: The results highlight that in both groups the ageing female family carers' health and social support were strongly associated with the level of their QoL even though there was also a strong effect of carers' perceived stigma on their QoL. Contrary to previous findings, ageing female family carers of adults with MI had a higher level of QoL compared with the carers of adults with ID. Hierarchical regressions show a stronger effect of perceived stigma on the carer QoL among the family carers of adults with MI than among the carers of adults with ID.
CONCLUSIONS: This study suggests that attempts to improve these female older family carers' health and social support must include their lifelong unmet needs in terms of how to cope with the perceived stigma associated with their position.
The social care system is widely seen as failing and it has long been clear that fundamental and lasting reform is necessary. Reform is made all the more urgent as an ageing population will mean rising demand for care and support. Projected changes in demographics, availability of support from carers, unit costs of care and other factors indicate that social care in its current form will struggle to meet people's needs. Longer life need not mean more time spent in ill health. Improving public health and developing interventions for long-term conditions could pay major dividends. The old-age "support ratio" (the relative numbers of working-age and older people) is not the most important factor in the likely future affordability of social care. Our society must not underestimate its ability to become more productive and wealthier, nor the contribution that older people will make to that.
In the report below we look at: — The present social care system; — Meeting future demand and costs; — Shortcomings of the present social care system; — Plans for reform; — Achieving lasting reform; and — The way forward.
Young carers of people with mental health problems are highly hidden, ostracised and vulnerable. To make matters worse, many professionals from the social, health and education sectors are not fully aware of the difficulties and central issues facing young carers of people with mental health problems. In order to make young carers of people with mental health problems more visible and to explore gaps in need and good practice from the perspectives of professionals, 65 participants were interviewed. The sample included professionals from the social, healthcare and voluntary sectors. Respondents were asked to discuss their understanding of young carers and appropriate interventions and methods to address young carers’ needs. Findings highlight: young carers’ isolation, stigma and restricted opportunities; fears involving family separation and child protection; and examples of good professional practice. New findings and examples of good professional practice that provide holistic, sensitive and effective support include: young carer groups and forums; young carer days; raising awareness of young carers in schools, especially via technology such as DVDs and the Internet; and having key workers to befriend young carers so as to advocate for better care, to provide emotional and psychological support and to facilitate young carer involvement.
Aims. This study aimed to provide an in-depth understanding of the process of hospital discharge experienced by the carers of patients ‘at risk’ of unsuccessful discharge from medical wards in three hospitals in the North of England.
Background. The Community Care Act and the Carers Recognition and Services Act placed responsibility on service providers to ensure the smooth discharge of patients from hospital making sure that appropriate community services are in place to support the patient and their informal carer following discharge from hospital. The study, from which this paper is taken, identified patients at risk of unsuccessful discharge and tracked the experiences of the patient and their carer through the discharge process. For the purpose of the study unsuccessful discharge is defined as unplanned readmission within 6 weeks of discharge or extended length of stay.
Design. The study combined qualitative and quantitative methods to identify factors leading to unsuccessful discharge. Logistic regression was used retrospectively with the records of 1500 patients to identify factors predicting unsuccessful discharge. A sample of medical patients predicted to be at risk of unsuccessful discharge, their formal and informal carers, were followed through the discharge process using qualitative techniques to look at decision-making and outcomes related to discharge.
Findings. This paper presents findings relating to patient/carer experiences of the discharge process. It explores the obligate moral climate in which the role of carer is negotiated between professionals, patients, family members, friends and neighbours and the differing assumptions about duty associated with caring roles in hospital and in family and community settings.
Conclusion. The discussion adopts a critical theory perspective to examine the contradictions confronting practitioners, patients and carers arising from hospital policies which promote cost-effective and efficient use of expensive technical resources while simultaneously seeking to identify and meet the needs of patients and carers for care.
Despite being an integrated part of the social care system, people with caring responsibilities often find their needs neglected by the NHS. Reports on research into developing an effective code of practice.
Successive legislation has underscored the importance of assessments that are sensitive to the needs of carers and take into account their ability and willingness to continue caring. This paper synthesizes qualitative and quantitative findings from a continuing programme of carer-related research that began in 1993 and has continued in parallel with legislative changes. It considers the process and characteristics of carer assessment from the perspectives of carers for individuals with a range of health and social care needs, and practitioners. This paper explores the assessment of carer need over time and highlights the considerable and enduring gap between policy and practice. It considers practitioners’ reluctance to offer separate carer assessments, identifies confusion relating to the interpretation of eligibility criteria and documents the limited contribution of health service staff. The need for an evidence-based framework for good practice, that distinguishes between carer needs, service provision and carer outcomes, is highlighted. The paper concludes by identifying key changes that are necessary to promote future good practice, such as staff training and information strategies and the need for practitioners to engage with carers as partners in the care process.
The article presents abstracts of studies about children who are living with and caring for parents with mental health problems, the pespectives of young carers, parents and professionals about child caregivers, and the experiences and needs of children caring for parents with severe and enduring mental illness.
The present paper provides an overview of the application of the key ethical issues which arose in an EU-funded research, technology and development project, Assisting Carers using Telematics Interventions to meet Older Persons' Needs (ACTION). The primary aim of the ACTION project was to support frail older people and their family carers in their own homes across England, Northern Ireland, the Republic of Ireland, Sweden and Portugal via the use of user-friendly information and communication technology. Ethical guidelines were developed in the project and used as a tool to enable the multidisciplinary project team to increase their awareness of ethical issues in their everyday work, and to act as a useful ethical framework for regular team discussions at international and local meetings across the partner countries. A range of ethical issues arose during the field-study phases of the project when the ACTION services were introduced into a number of families' own homes. It can be argued that these ethical issues reflect factors relating both to the application of research into practice, as well as those relating more directly to the use of new technology by families and care professionals. Key issues centre upon the ethical concepts of autonomy, independence, quality of life, beneficence, non-maleficence and justice, and more specifically, on ethical issues of security, privacy and confidentiality, increased expectations, and withdrawal of the service. This paper is intended to facilitate dialogue and debate in the area of enabling (assistive) technology in home care for older people and their families.
This thematic inspection was carried out jointly by SSIW and the former CHI between January and June 2004. Its main purpose was to better understand the experiences of patients with social care needs who are admitted to hospitals with physical ill-health in Wales and to examine the effectiveness of health and social care services in meeting those needs. Evidence of patients' and family carers' experiences was elicited from an all-Wales questionnaire completed by over 200 respondents and from interviews with 36 patients or their family carers from three different parts of Wales. Evidence of the effectiveness of the services was elicited from an all-Wales self assessment questionnaire completed by most local authority social services, local health boards and NHS Trusts and from fieldwork in three geographical regions: north-east Wales, Ceredigion and mid-Wales and Pontypridd and Rhondda.
This article reports on findings from a qualitative study, undertaken in England, which explored the experiences of 21 gay men and lesbian women who care, or cared, for a person with dementia. The aim of the study was to explore this experience through the lens of a person's gay or lesbian sexuality. The paper reports two related themes that emerged from the wider study – respondents' hopes, fears and plans for the future and, specifically, the way in which their caring experiences had coloured their views and expectations of how their own health and social care needs may be met. Respondents' narratives reflect a range of pervasive anxieties about the future. First, about the possibility that they might be diagnosed with a condition such as dementia and, consequently, the myriad ways in which their sexualities and lifestyle choices may be perceived and interpreted as they themselves age and, possibly, require health and/or social care and support. In light of these concerns, respondents reflected upon the need for specialist service provision for older gay and lesbian people – an idea that was, perhaps surprisingly, not universally welcomed.
Reminiscence therapy has the potential to improve quality of life for people with dementia. In recent years reminiscence groups have extended to include family members, but carers’ experience of attending joint sessions is undocumented. This qualitative study explored the experience of 18 family carers attending ‘Remembering Yesterday Caring Today’ groups. Semi-structured interviews were transcribed and subjected to thematic analysis. Five themes were identified: experiencing carer support; shared experience; expectations (met and unmet), carer perspectives of the person with dementia’s experience; and learning and comparing. Family carers’ experiences varied, with some experiencing the intervention as entirely positive whereas others had more mixed feelings. Negative aspects included the lack of respite from their relative, the lack of emphasis on their own needs, and experiencing additional stress and guilt through not being able to implement newly acquired skills. These findings may explain the failure of a recent trial of joint reminiscence groups to replicate previous findings of positive benefit. More targeted research within subgroups of carers is required to justify the continued use of joint reminiscence groups in dementia care.
AIM: This paper reports a study identifying the health and social care needs of informal carers for dependent adult relatives from a Bangladeshi community in South Wales and their views on the acceptability and appropriateness of formal support services provided by statutory, private and voluntary sectors.
BACKGROUND: Within the next 20 years in the United Kingdom the proportion of older people from black and ethnic minority communities will dramatically increase and there will be an increased demand for carers. Asian carers, particularly Bangladeshi carers, are one of the most neglected and invisible groups. As carers are fundamental to the success of community care and their importance is increasingly recognized, caregiving within Asian communities needs further exploration.
METHODS: A qualitative study with individual focused interviews was conducted with 20 Bangladeshi carers, using a combination of purposive and snowball sampling. Maxwell's dimensions of acceptability and appropriateness of quality of care were applied to aid understanding of the findings.
FINDINGS: Families primarily cared for Bangladeshi dependent adults and viewed the experience positively, although they were providing care under challenging circumstances. There was a lack of awareness of the health and social services available to assist carers, and limited involvement of community nursing and social services. A tension was identified in accepting some types of formal support, and ethnocentrism in service provision was evident.
CONCLUSION: Institutional barriers to accessing formal support, such as the inability to meet religious and cultural needs, must be addressed if Bangladeshi carers are to be provided with services which are acceptable to them. Primary care providers, including community nurses and health visitors, need to work in partnership with the Bangladeshi community if services are to be acceptable and appropriate for meeting the needs of these hidden carers.
Mencap’s 2003 Breaking Point report identified the appalling situation faced by the majority of families caring for children and adults with severe and profound learning disabilities. Despite highlighting the issues with central and local government at every opportunity, Mencap continues to meet families pushed to breaking point. We have revisited the issues in this report, as we have come across many more stories of families who are still not getting the short break they need. We can confirm that, sadly, nothing has really changed. From May to July 2006 we followed up our work with a survey of 353 families in six local authority areas in England1 and throughout Northern Ireland to find out about the short breaks they get and need. This report tells the shocking stories of families still being denied the right to a family life due to a continuing lack of short breaks. Families are still left to reach breaking point, experience ill health and lead diminished lives as short break services are not being provided to help them care for their sons and daughters.
Given the growth of care needs, the emphasis on informal care and the increasing labour force participation of women and senior workers, balancing employment and elderly care responsibilities is a crucial challenge. This qualitative study explores how and with what implications Italian senior workers combine work with care for older people. The results indicate that the impact of care responsibilities on work is limited and that employment has a buffer effect on overwhelming care responsibilities. By contrast the implications for private and family life are considerable. The conditions and mechanisms that support these results are discussed.
This study examines the experiences of 50 older caregivers to people living with HIV/ AIDS in Lomé, Togo. The authors used a mixed qualitative-quantitative design to identify several challenges faced by the elderly caregivers. They were ill prepared for the caregiving demands and overburdened by enormous financial needs of people with HIV/AIDS, having been unexpectedly thrust into the role. They felt frustration, despair, and isolation because HIV/AIDS has changed the family structures and social expectations. Also, most of them reported how caring for someone with HIV/ AIDS had depleted their resources. Although they did not complain about caring for a person with HIV/AIDS, almost all wished for an institutional solution to relieve them of the burden of providing care. To alleviate the struggles of older caregivers to people with HIV/AIDS policymakers and HIV/AIDS programs need to incorporate caregivers into their policies and services.
Part 3 of a video on carers of people with dementia.The video highlights the different roles a carer plays (or different hats). They need to be compassionate when looking after the physical and mental health needs of the person they are caring for. They also need to be a warrier in order to battle to find out what services and benefits are available.
Many support groups and resources for informal carers are geared towards meeting women's needs. However, a growing number of men are carers - with nearly half now male - and their support needs are neither recognised nor met. This article outlines the process of setting up and running a support group for male carers.
Introduction: The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce.
Aim: To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications.
Method: The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67–83), participated in four focus group discussions, which each met once for not more than 2 hours.
Findings: The discussions resulted in one comprehensive theme; ‘Mastering an uncertain and unpredictable everyday life’. Three subthemes emerged from the material: ‘Living with another man’ where the carers discussed not only the marked change in their partner’s personality, but also the loss of a life-companion and their mutual intellectual contact; ‘Fear of it happening again’, comprising the carers’ experiences of fear and confinement, of always having to be ready to help and of being trapped at home; ‘Ongoing negotiation’, referring to the carers’ struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves.
Conclusion: This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers’ need for time to themselves, a greater knowledge of stroke and continuous support from formal care.
The Department for Work and Pensions (DWP) commissioned the Social Policy Research Unit at the University of York to conduct research exploring the aspirations and decisions around work and retirement of people looking after disabled or sick relatives, friends, or older people. The study involved three elements: a literature review; in-depth interviews with 80 carers; and focus groups with professionals from Jobcentre Plus, social services departments and carers organisations who worked with carers.
We analyse the impact of the provision of care on the health and quality of life (QoL) of adult female informal caregivers using a representative sample drawn from the survey of health, ageing and retirement in Europe (SHARE). We match each informal caregiver with a non-carer using propensity score matching and test whether matched individuals differ on self-assessed health and a functional indicator of QoL and whether this relationship differs across European regions. We find a North–South gradient both for self-assessed health and QoL, and our results show that the provision of caregiving to close relatives in Europe impacts on the caregivers’ QoL and health in a way that depends on their geographical location, the degree of formal care and specific cultural and social factors of the area. We find that informal caregiving is a complex phenomenon which may bring both psychological rewards and distress to providers of care and this complexity, along with the geographical gradient highlight the importance of ensuring that policies match the needs of individual carers in their own geographical areas and cultural contexts.
Outlines ongoing research into the way care in mental health is constructed by professionals in law and policy, and the impact of those constructions for people who find themselves identified as 'carer' or 'cared for'. The research also looks at how people construct and experience care within their partnerships.
Background: Informal carers frequently suffer adverse consequences from caring. General practice teams are well positioned to support them. However, what carers of stroke survivors want and expect from general practice, and the practical support measures they might like, remain largely unexplored.
The aims of this study are twofold. Firstly it explores both the support stroke carers would like from general practice and their reactions to the community based support proposed in the New Deal. Secondly, perceptions of a general practice team are investigated covering similar topics to carer interviews but from their perspective.
Methods: Semi-structured interviews were conducted with 13 stroke carers and 10 members of a general practice team. Carers' experiences and expectations of general practice and opinions of support measures from recent government policy were explored. General practice professionals were asked about their perceived role and their perceptions of carers' support needs. Interviews were content analysed.
Results: Carers' expectations of support from general practice were low and they neither received nor expected much support for themselves. General practice was seen as reactive primarily because of time constraints. Some carers would appreciate emotional support but others did not want additional services. Responses to recent policy initiatives were mixed with carers saying these might benefit other carers but not themselves.
General practice professionals' opinions were broadly similar. They recognise carers' support needs but see their role as reactive, focussed on stroke survivors, rather than carers. Caring was recognised as challenging. Providing emotional support and referral were seen as important but identification of carers was considered difficult. Time constraints limit their support. Responses to recent policy initiatives were positive.
Conclusions: Carers' expectations of support from general practice for themselves are low and teams are seen as reactive and time constrained. Both the carers and the general practice team participants emphasised the valuable role of general practice team in supporting stroke survivors. Research is needed to determine general practice teams' awareness and identification of carers and of the difficulties they encounter supporting stroke carers. Carer policy initiatives need greater specificity with greater attention to diversity in carer needs.
Looks at a government backed private member's bill which is seeking to extend the rights of carers.
Public policy increasingly emphasises the importance of informal support networks to meet the needs of the ageing population. Evidence for the types of support neighbours provide to older people and how neighbours collaborate with formal support-givers is currently insufficient. Our study therefore explored (i) types of informal neighbour support and (ii) experiences of neighbours, volunteers and professionals providing support. Interviews with nine Dutch neighbour support-givers, five volunteers and 12 professionals were conducted and subjected to latent content analysis. Findings indicate that commitment occurred naturally among neighbours; along with providing instrumental and emotional support, neighbour support seems to be a matter of carefully ‘watching over each other’. Neighbour support-givers, however, are often frail themselves and become overburdened; they furthermore lack support from professionals. Neighbour, volunteer and professional support-givers seem to operate in distinct, non-collaborative spheres. Findings suggest that policy-makers should consider the opportunities and limitations of neighbour and volunteer support. Professionals have an indispensable role in providing back-up and accountable, specialised support. They may be trained to adopt a visible and proactive attitude in neighbourhoods to facilitate, cooperate with and mediate between neighbour and volunteer support-givers.
The growing population of people with complex needs who require social care makes it important to find out what is the best way to support them. We looked at this question, interrogating the available research evidence, and also talking to the people directly concerned about what they want from social care. Our findings come from a large-scale literature search of all the current UK research evidence on this subject. We also listened to people with complex needs, their carers, and members of specialist organisations about what works best.
This article explores the role of the district nurse in supporting family and friends who act as informal carers for patients who wish to die at home. The district nurse can support carers by promoting patient comfort, assessing carer needs, using communication and counselling skills, providing timely information, planning for anticipated needs, and co-ordinating and liaising with appropriate services and professionals. This requires the district nurse to develop a trusting carer-nurse relationship. The Gold Standards Framework and Liverpool Care Pathway for the Dying Patient are discussed as a means of guiding healthcare professionals to optimise palliative care for patients and carers. The author suggests that the principles discussed are equally applicable to any nurse who cares for dying patients and their families.
Carers and people with disabilities are two disadvantaged groups at risk of social exclusion. Work is an important route to social inclusion, but carers and people with disabilities are under-represented in the work force. The present paper reports key findings from a new study that evaluated People into Employment (PIE), a pilot employment project in the north-east of England designed to support people with disabilities, carers and former carers in gaining mainstream work. The study aimed to identify what clients, partner agencies and employers perceived to be PIE's most important services, its strengths and areas where there was scope for further development. The study collected quantitative and qualitative data at the mid-point and at the end of the project through two questionnaire surveys, and interviews with PIE clients, the project development officer, partner agencies and employers. Drawing on the ‘pathway model’, the findings show that PIE's interventions included mobilising, matching, mediating and supporting activities. Key ingredients in PIE's success include: tailor-made job-search activities and training; adjusting the pace at which people move towards sustained employment; recognising and responding to the differing needs of people with disabilities, carers and former carers; confidence boosting; accompanying clients to job interviews; good job matching; and ongoing practical and emotional support for both clients and employers. Rudimentary calculations suggest that the cost per job to the project is less than the cost per job for large national projects. Overall, these findings illustrate how access to employment via flexible job-search services geared up to the local labour market can successfully promote social inclusion for carers and people with disabilities.
Background and objectives Research into carers of people with young onset dementia (YOD) has highlighted that carers may experience more distress than late onset dementia (LOD) carers (e.g. Freyne, Kidd, Coen & Lawlor, 1999), and have specific needs which differ from those of LOO carers (e.g. Svanberg, Spectar & Slott, 2011). Difficulties with employment has been raised as a particular issue for this population (e.g. van Vliet, de Vugt, Bakker, Koopmans & Verhey, 2010), yet no qualitative study has examined the factors influencing carers' experience of employment. This study aimed to explore such factors and how these impact on carers' ability to cope with their caring roles. Method A qualitative grounded theory approach was used to study the experiences of employment using in-depth semi-structured interviews. Ten YOD carers with experience of employment, who were living with, and caring for, someone who had been diagnosed with dementia before the age of 65, were recruited through carer support groups using purposive sampling. Results Nine theoretical categories were identified, including: dealing with the challenges of the caring role, appraisal, attributing responsibility, support, benefitting from working, transferring work skills, mutual interference of work and home, needing flexibility to continue working and being motivated to seek work. by a need for space and identity. Conclusions These findings expand current theoretical knowledge of how YOD carers may manage employment alongside their caring role. Findings suggest carers may experience employment as personally beneficial, and that it may directly and indirectly influence their ability to cope with their caring role. YOD carers' vocational needs, and their coping resources may need to be explicitly addressed in clinical assessments, and explored and incorporated into psychological interventions. Further research is warranted to validate the findings empirically with a larger sample of YOD carers.
Informal carers provide important emotional support to patients having chemotherapy and assistance in monitoring and managing side-effects. If they are inadequately supported in this, patient and carer morbidity may result. This study explored needs of informal carers supporting patients with cancer having chemotherapy. The study used a mixed methods approach. Carers of colorectal or lymphoma cancer patients at one comprehensive cancer centre participated. Questionnaire data informed semi-structured interviews conducted with a subsample of respondents. Interviews were analysed using Framework analysis. Questionnaire data were analysed descriptively. Fifty-nine informal carers were invited to participate; 48 returned the questionnaire (response rate 81%) and 13 were interviewed. Informal carers' needs for information about chemotherapy and its side-effects were largely met although a third felt completely or somewhat unprepared to deal with particular symptoms experienced by patients at home. Many carers had unmet needs regarding financial support and their own needs as carers. Assertiveness was important to many caring roles, but it appeared difficult for informal carers to adopt when they were unsupported in this and their role was unrecognised by health professionals. Future research should develop interventions to systematically prepare carers for their carer role, improve carer involvement and ultimately improve patient outcomes.
OBJECTIVE: To explore the experience of caregiving in informal carers of stroke patients.
DESIGN: The research approach was qualitative. Data were collected one year after the stroke occurred using a semi-structured interview. The audio-taped interviews were transcribed and following this process were analysed thematically using constant comparative procedures.
SETTING: West of Scotland.
SUBJECTS: Twenty-two informal carers of stroke patients.
RESULTS: The results are presented under the headings: Preparation for discharge/feelings about discharge; The early weeks/months at home; A year of caring; and The future. The main themes identified within these broad areas were as follows: physical preparation; emotional support; the supply of information and advice; and the provision of appropriate services (both social and health service provision).
CONCLUSIONS: The data gathered in this small-scale study suggest that the physical and emotional toll associated with caregiving was great. Unfortunately, the help and support provided by the health and social services was often inadequate, inappropriate and poorly tailored to their individual needs. There was little evidence of a seamless flow of care between the secondary and primary care settings.
This report documents the findings of a two year study looking at the impact of the Carers (Recognition and Services) Act 1995 in four local authority social services departments in northern England. The work was funded by the Department of Health under the Outcomes for Social Care initiative. We began the study in November 1997, two years after the full implementation of the Carers Act. The specific research questions the study addressed were: 1. what are the results of national policy in terms of local policy and practice in selected authorities? 2. what are the results of local policy and practice from the carer's point of view in terms of assessment under the 'Carers Act, services and outcomes? The study's findings will help establish the significance of the Carers Act for adult carers, as well as yielding recommendations and good practice points for those staff in local authorities who are responsible for implementation. At the same time, the results are of wider interest, for instance the research can make a contribution in particular to the implementation of the Carers and Disabled Children Bill (currently making its way through parliament), the National Strategy for Carers (DH, 1999a), and any future policy developments on carers' issues.
A review of articles published between 2000 and 2013, retrieved from several databases, was conducted to identify research findings regarding nursing interventions intended to meet the needs of the family members of patients in the intensive care unit. The dimensions of need identified were support, comfort, reassurance, information and closeness, with reassurance, information and closeness being the most important. Overall, the needs of patients’ family members were unmet. The results of studies revealed that providing families with proactive communication strategies and information via brochures or leaflets, developing education programmes and establishing family-centred care may be effective in increasing family members’ satisfaction, improving their understanding of the patient’s condition and decreasing anxiety and depression, and post-traumatic stress disorder. Consequently, nurses should promote comprehensive family-centred care by using the best evidence to meet families’ needs. However, more experimental studies are required to determine the effectiveness of specific interventions.
PURPOSE: (1) Describe the challenges facing relatives of persons with stroke in accomplishing their daily activities and social roles (participation). (2) Reflect on the role of rehabilitation for relatives and ethical issues that may emerge following the adoption of a family-centred approach.
METHOD: Review of the scientific literature in Medline (1996 to July 2009), Embase (1996 to July 2009) databases using keywords: stroke AND participation AND family OR spouse OR caregivers AND ethics AND burden. Selection criteria were as follows: study must examine the participation of relatives post-stroke (or equivalent concept such as burden), rehabilitation interventions for relatives post-stroke or ethical issues related to being a relative of a person with stroke. Articles not written in English or French were excluded.
RESULTS: The sample comprised 17 scientific articles. According to five studies, social participation of relatives is characterised by increased responsibilities and a reduction in interpersonal relationships and leisure. In rehabilitation, there is no consensus regarding what should be done for relatives; guidelines exist but are not applied in practice. Little has been formally reported regarding ethical issues likely to emerge for relatives.
CONCLUSIONS: The main impact of stroke is on social roles of relatives such as responsibilities, interpersonal relationships and leisure. The role of rehabilitation and related ethical issues needs further examination.
One cannot imagine that an individual with dementia could be abused by their carers who, more often than not, are close family members. Yet sufferers stand a high chance of falling victim to abuse because of their vulnerability. In this next article, Colm Owens and Claudia Cooper explain how they went about finding out from family carers of dementia sufferers how far abuse can go in order to understand what drives an individual to act in such a way.
Background: In the U.K. about 141,460 people with dementia (PWD) live alone. They are at risk of social isolation and inadequate social and medical supervision. The aims of this study were to identify the needs of PWD living alone and to compare the needs of PWD living alone versus those living with others. It was predicted that PWD living alone would have significantly more unmet needs than those living with others.; Methods: 152 PWD were interviewed about their cognitive status and quality of life (QoL); and 128 informal carers were interviewed about the PWD's QoL, social networks, behavioral and psychological symptoms (BPSD), functional status, and services used. For 24 PWD no carer was available. Carers were also interviewed about their own symptoms of depression, anxiety, burden, and satisfaction. Researchers rated PWD's needs. One-third of the PWD (50) were living alone.; Results: PWD living alone had significantly more unmet needs (M = 3.9, s.d. 3.1) than those living with others (M = 2.0, s.d. 2.0) (U = 1578, p < 0.01) particularly in the areas of looking after home (χ2 = 17.23, p < 0.001), food (χ2 = 13.91, p < 0.002), self-care (χ2 = 10.23, p < 0.002) and accidental self-harm (χ2 = 16.51, p < 0.001). The most frequent unmet needs were daytime activities (27, 54.0%), company (26, 52.0%), psychological distress (22, 44.0%), eyesight/hearing (16, 32.0%), and accidental self-harm (16, 32.0%). Conclusion: PWD living alone are a vulnerable group who are at increased risk for unmet social, environmental, psychological and medical needs. This study illustrates the need to identify these individuals and to make provisions among social service agencies to monitor their well-being regularly and provide a higher level of support when needs are identified.
Goals: Despite being both providers and intended recipients of care, informal carers in cancer palliative care report high levels of distress and unmet needs. In order to develop supportive care strategies, this analysis aimed to identify which patient characteristics contribute to carer psychological distress and which coping strategies carers employ.; Patients and Methods: Informal carers attending two home palliative care services gave cross-sectional data regarding patient characteristics and their own psychological status using standardised measures. Multivariate analyses were performed for each dependent carer psychological measure, with patient characteristics as independent variables (adjusted for carer age and gender).; Main Results: Forty-three carers participated. Greater patient distress was associated with carer anxiety (b value: magnitude of the effect) (b=0.31, p=0.07), and both patient psychological status (b=0.37, p=0.02) and pain (b=0.29, p=0.09) were associated with carer psychological morbidity. Carer burden was associated with patient psychological distress (b=0.35, p=0.03) and pain (b=0.29, p=0.08). Carer avoidance/emotion-focused cognitive coping strategies were associated with patient physical function (b=0.34, p=0.04), and cognitive problem-focused coping was associated with patient symptoms (b=0.28, p=0.06) and physical function (b=0.29, p=0.05). Conclusions: Adequate provision of patient psychological interventions and effective pain education and control are needed in order to improve carers' psychological health. Patient characteristics are associated with apparently opposing forms of carers' coping (i.e. both avoidance and engagement), demonstrating the importance of interventions addressing a range of coping responses. Further research is needed to understand why carers employ problem-focused coping in response to symptoms but not to pain. Evidence-based interventions for informal carers are urgently needed but must be delivered in the context of optimal patient pain and symptom control.
Objective: To gain insight into caregivers' understanding of the causes of behaviours they find problematic in people with Alzheimer's disease in order to inform the development of educational strategies.
Methods: A qualitative, semi-structured interview was used. Participants were 205 caregivers for a person with Alzheimer's disease, all of whom were aware of the diagnosis and who had been recruited as part of a larger longitudinal study. Participants were from inner-city and suburban London/semi-rural Essex. The main outcome measures were caregivers' understanding of: the cause of problematic behaviour; the ability of the person with dementia to control this behaviour; the prognosis of the illness.
Results: Most carers attribute the cognitive, behavioural and psychological symptoms of dementia to causes other than dementia; many believe that the person with dementia has control over their behaviour and substantial numbers believe the person with dementia will return to normal.
Conclusions: This study suggests that providing facts about the illness to caregivers is not enough, as caregivers may not understand that the symptoms they observe are related to the diagnosis. Education by clinicians should focus on the understanding of caregivers and in particular explore the caregivers' attributions of the symptoms which are present in the person for whom they care. Copyright © 2004 John Wiley & Sons, Ltd.
Aims: Expanding prevalence of diabetes has a major health impact on older people and the burden experienced by their informal carers. We report research which aimed to examine the burden on carers and highlight their input into diabetes care.; Methods: Of 98 diabetes patients aged over 59 years, 89 regularly received help with day-to-day activities or looking after from someone else and, of these, 83 carers consented to interview. Patients and carers were administered questionnaires related to the management of diabetes and personal strain (including Diabetes Knowledge Questionnaire, EuroQol, Caregiver Strain Scale and General Health Questionnaire).; Results: A substantial unmet need of older people with diabetes mellitus, in relation to domestic activities and diabetes care, was highlighted. Patient and carer diabetes knowledge was low. Primary carers were generally female relatives from the same household, not in paid employment. Twenty-seven carers (33%) provided ≥ 35 h of care work each week. Most carers experienced a moderate level of stress, but 11 (14%) regularly felt overwhelmed. Thirty-three carers (40%) said they had never received any information on diabetes from professionals. Help most frequently wanted was advice and support in relation to accessing community services and about finances, benefits and/or allowances. Conclusions: Both patient and carer diabetes education strategies are required. Instruction for carers in the basic care of patients with diabetes is also needed and should be targeted. As many as one in seven carers felt regularly overwhelmed and lacked adequate support. Finally, 26 carers (31%) were entitled to benefits which they did not claim.
Objective: To explore factors that influence how informal caregivers manage medications as part of caring for hospice patients.
Methods: Semistructured, open-ended interviews were conducted with 23 informal caregivers and 22 hospice providers from 4 hospice programs in the Chicago metropolitan areas. Qualitative analysis was conducted consistent with the grounded theory approach.
Results: In general, informal caregivers and hospice providers identified similar key factors that facilitated or impeded caregivers' process in managing medications. Caregivers' life experience and self-confidence were considered assets that facilitated medication management. Limitations impeding the process included caregivers' negative emotional states, cognitive and physical impairments, low literacy, other competing responsibilities, as well as patients' negative emotional states and complex medication needs. Furthermore, the social context of medication management emerged as a salient theme: caregivers' good interpersonal relations with patients facilitated medication management, whereas poor communication/relations among caregivers within a support network impeded the process. While both study groups discussed the positive attributes of good caregiver–patient relations and support from multiple caregivers, hospice providers were cautious about the potential adverse influence of close relations with patients on caregivers' decision making about medications and discussed poor communication/relations among informal and privately hired caregivers that often resulted from family conflicts and/or a lack of long-standing leadership.
Conclusion: Our findings suggest additional intervention points, beyond knowledge and skill building, that could be addressed to support caregivers in executing medication responsibilities at home for hospice patients.
This article investigates the relationship between the 'gender informal care gap' - the relative contributions of women to informal care for non-co-resident relatives and other members of social networks, compared to men - and public care policies, level of care needs, labour market position and gendered care attitudes. Since the literature suggests that none of these factors alone can explain the gender informal care gap, we develop a model based on fuzzy-set/qualitative comparative analysis in order to identify patterns in the relationship between the factors. The analysis conducted at the macro-national level in 13 European countries, suggests that at the macro-level, the availability of public care services is crucial to understanding the gender informal care gap, while women's labour market position, the presence or absence of gendered care attitudes and the level of care needs play no or a relatively minor role.
Introduction Research has shown that approximately 67% of carers experience extreme mental tiredness, a decrease in their quality of life and a deterioration in their physical health since taking on a care-giving role. Aims and objectives This study aims to identify factors that influence carer burden and in doing so, identify the sub-populations of carers who are most susceptible to burden. Methods In northwest Ireland, 53 informal carers referred to the Carers Association, Sligo were contacted and met for a face-to-face interview. Measurements used included demographic data, the Neuropsychiatric Inventory, Zarit Burden Interview, Social Network Index and Brown's Locus of Control Scale. Results Of the 53 carers, 43 were females and 10 males (age range: 32–81 years, mean age of 64.5 years). Of the corresponding 53 patients, 21 were females and 32 males (age range: 17–92 years, mean age of 72.1 years). Multiple linear regression analysis showed that sex of carer, marital status and the patient's behavioural problems were statistically significant independent factors, which influenced carer burden (p < 0.01). Female sex and greater patient behavioural problems increased susceptibility to burden and being married increased resilience towards burden. Conclusions: The ability to predict which carers are more susceptible to burden allows physicians to more quickly identify “higher risk” carers, facilitating routine check-ups by physicians and carer support services. Further research should explore why female and unmarried carers are more susceptible to burden and whether it is possible to tailor support services to their individual needs.
Introduction The multi-faceted nature of Huntington's disease (HD) presents an argument for professionals to work in close collaboration with care givers in training and service provision. It is argued that there is a case to further develop services where part of the required care is jointly delivered by professionals and carers at the same clinical setting. This will enhance mutual understanding of the scientific and clinical aspects of HD together with specific individual needs. While professionals are at risk of overgeneralization and ‘stereotyping’ patients, carers find it difficult to disentangle HD from the ‘person’ behind it. It is also sometimes difficult for carers to utilize the outcome of various assessments therapeutically to benefit their loved ones and ‘lighten up’ their care giving burden. Our model Carers are usually invited to give formal talks to the team and trainees. A carers’ representative is always invited to service development meetings. That person does also act as a mediator seeking other carers’ views and communicating any concerns to managers. Similarly, our team members are regular attendees to the local support group meetings. This is not only for educational purposes but also to communicate and seek views on service changes. Team members did joint publications with carers. In the context of our inter-disciplinary clinic, a carer is always available at the waiting area explaining to patients what they should expect. She also provides information about the disorder and the role of the support group using a variety of posters and leaflets. Many carers take the opportunity to discuss their concerns; often raising different matters with ‘a fellow carer’ than with other team members. She will then attend part of the meeting after the clinic to feedback on how the clinic was run. Further, that carer spends time with trainees who find talking to a carer with a firsthand experience of HD quite enlightening. They are then able to appreciate the consequences of this disorder on family dynamics. They also have a better understanding of how scientific and clinical information be personalized to help patients and families. Conclusion The value of involving carers in shaping services and tailoring individual care plans as well as training junior clinicians cannot be over estimated.
Background. We explore the nature and aspects of the information needs of informal carers. A comprehensive understanding of these needs is important because it is the first step to meeting these needs effectively. Aim. We report on an empirical validation of a framework for understanding the information needs of carers, composed of four need states: recognised-demanded, recognised-undemanded, unrecognised-demanded, and unrecognised-undemanded. Methods. A qualitative study employed semi-structured interviews with nine informal carers of diabetic children. The study also helped to develop items for the subsequent questionnaire that was used to measure the information needs state with 198 informal carers (over 18 years old). Results. The existence of four states of information needs was con firmed empirically. The occurrence and frequency of the four states may vary. Conclusions. The framework provides a basis for investigating, understanding and classifying the information needs of informal carers and information needs in general. It also assists in designing and providing information that may meet the needs of informal carers more effectively.
Feminism rather than gerontology characterises this book but the substantive issues lie within the field of gerontology and the shift in the boundaries of paid and unpaid work at the end of the twentieth and in the early twenty-first centuries. Cash payments for care are a possible method of ensuring care and citizenship. The chapters raise issues of long-term care funding, the positions of users, caregivers and care workers in the care relationship, how care work could be professionalised and support for informal carers. The first chapter summarises the issues involved in the new systems which emerged in the 1990s and the impact of funding regimes, together with the literature which appeared reviewing these policy developments and the policy context. Increased longevity and changes in family structure diminished the number of potential caregivers, particularly in the EU and North America. Containing costs of social care through the funding of retirement pensions and long-term care forms the second major issue [...]
Family caregivers are indispensable, yet they often feel underappreciated and inadequately supported by nurses and social workers. When they visit a hospitalized loved one, they may never be asked, "How are you doing? How are you managing?" They need more help on two fronts: becoming better caregivers and avoiding becoming patients themselves.
Editorial on a report from the American Association of Retired Persons (AARP) highlighting the economic contribution of family carers of older people. It is argued that health professionals must collaborate with informal carers as partners and support their needs.
The family is a space for learning that is in constant renewal and enrichment. However, when one of its members has a disability, the family plays a major role in the daily reconstruction of the intimate and social life of its members. And as ageing is inevitable, parents are constantly worried about who will take care of their children. Children become increasingly more dependent as parents face physical limitations in caring for their children. A qualitative descriptive exploratory study using a phenomenological approach was carried out to answer the initial question: “Do parents of adult children with disabilities experience specific needs?” Based on this methodology, data were collected through semi-structured interviews with five elderly parents caring for their disabled children and attending the CEFPI (Centre for Integrated Vocational Education and Training). Results indicate that these parents live for their children, which is inherent to a moderate level of care dependence for self-care functions such as personal hygiene, walking, dressing and undressing. They care for the children by themselves, and they feel alone in their role.
This paper looks at the work of 18 local authorities to create systems and support to help families with young carers. It explores some of the positive outcomes from taking a family-focused approach and showcases good practice in this field.
Background: People with dementia often die badly, receiving end-of-life care of poorer quality than that given to those who are cognitively intact.
Aims: To define good end-of-life care for people with dementia and identify how it can be delivered across care settings in the UK.
Method: In-depth interviews were conducted with 27 bereaved family carers and 23 care professionals recruited from the community, care homes, general hospitals and continuing care units. Data were analysed using the constant comparison method.
Results: The data highlighted the challenge and imperative of ‘dementia-proofing’ end-of-life care for people with dementia. This requires using dementia expertise to meet physical care needs, going beyond task-focused care and prioritising planning and communication with families.
Conclusions: The quality of end-of-life care exists on a continuum across care settings. Together, the data reveal key elements of good end-of-life care and that staff education, supervision and specialist input can enable its provision.
The Long Term Conditions Alliance Scotland (LTCAS) was established in 2006 to bring together hundreds of voluntary and community organisations across Scotland in order to give a national voice to ensure the interests and needs of people living with long-term conditions are heard and addressed. The events held in Glasgow on 13 February 2007 and in Aberdeen on 15 March 2077 are described. The events involved people living with long-term conditions, unpaid carers, professionals from health, social care and voluntary organisations and policy makers and aimed to answer the question how can NHS Scotland support people who have long-term conditions and their carers?
Caregivers play an important role in the treatment and recovery of people with psychosis but they have different needs from service users and can experience significant distress as part of their role. Responding to caregiver needs is not readily identified as being the primary responsibility of clinical services that have limited resources. A small pilot study sought to evaluate the effect and acceptability of providing a brief, needs-led intervention to long-term caregivers of service users with psychosis. A two or three session, interactive and structured intervention, adapted from family work with psychosis, focused on facilitated carer access to reliable information about psychosis, goal setting and adaptive problem-solving. Measures of affect, coping and care-giving impact were completed at baseline and post-intervention. Data for the first four caregivers who attended individual sessions are presented. Post-intervention scores indicate reductions in levels of carer distress and depressive symptoms. Caregivers reported high levels of acceptability and satisfaction. Further studies are required to evaluate the impact of such interventions on a larger number and wider range of caregivers.
While policy promotes comprehensive assessment of family career needs and a plan to adequately meet family career needs within palliative care, there is a lack of studies in the Australian context which examine the current type of assessment and types of care provided to family carers. The aims of this study were (1) to determine how career needs are currently assessed and what level of support is available to family carers in three home-based palliative care services within Australia, (2) identify areas for improvement of support to carers and, (3) explore the barriers to offering career support. A focus group and file audit were conducted at two metropolitan and one regional home-based palliative care service in Australia. These palliative care sites reported substantially different levels of services provided to family carers and also reported multiple barriers to providing services for family carers. Only one site had a formal structured procedure to assess career needs and none of the sites used a separate career care plan or offered a structured intervention to assist carers with their role. Family meetings were offered infrequently by most sites. A number of barriers to supporting carers were highlighted including lack of resources, and areas for improvement were also suggested by health professionals from the sites.
Background: older patients are less likely to receive palliative care than younger patients. As patient and primary carer age correlate positively, patterns may be due to carer rather than patient age, and reflect better ability to obtain support among younger carers.
Objective: to investigate how both patient and carer age relate to palliative care use, controlling for relevant variables.
Design: comparison of patients who received community Macmillan nurse specialist advice, Marie Curie nursing or inpatient hospice care with patients who did not, using univariate analysis and multivariate logistic regression. Patient and carer data were collected through electronic service record linkage and carer post-bereavement interviews.
Sample: patients referred to a hospice at home service whose primary carer could be interviewed (n = 123).
Results: whilst a cancer diagnosis was an important determinant of access for all services considered, logistic regression shows that carer age, but not patient age, and hospice at home access predicted Marie Curie nursing use. Both patient and carer age predicted use of Macmillan nurse advice. Age of the patient, but not carer age, predicted admission to inpatient hospice, alongside requiring care for over a month (all P<0.05).
Conclusions: carer age may be as important a predictor of palliative home care use as patient age. We need to investigate whether younger carers have greater support needs or show greater effectiveness in obtaining help and to assess whether older carers need more assistance in recruitment of support.
This guidance is to help Local Health Boards, as the lead Organisation working in partnership with Local Authorities, to implement, develop and put in place local information and consultation strategies for carers required by the Welsh Government. This document sets out the purpose and background of the guidance, the format and content that a Strategy should take, including minimum requirements, a timetable for delivery and monitoring, review and evaluation arrangements.
Attempts to address the nursing shortage must consider the aging nursing supply and the decreased labour participation among nurses at age 55 and older. Efforts to retain older, experienced nurses have been meagre, and little attention is paid to the role of eldercare in decisions to leave the profession. This pilot study examines current workplace practices that may contribute to early withdrawal of older nurses from the hospital workforce. Interviews with 28 elder caregiving registered nurses and assistive nursing personnel at a New York hospital were conducted. Respondents reported that successful management of their dual roles rests on identifying units and shifts that suit their needs, erecting clear boundaries between home and work, and their love of nursing. `Caregiver-friendly' practices such as creative, flexible scheduling; access to social workers; financial and legal services; and increased awareness among managers about caregiver strains were recommended.
Aim: The aim of the study was to explore the information needs of informal carers, and how information from health professionals can become more effective for families caring for people with epilepsy. Methods: A combined methodology was used, comprising an interview study and a survey. Twelve in-depth interviews with carers were carried out. The questionnaire was developed using the interview data, to which 70 carers responded. Results: Four main themes have been drawn from the study.
Carers’ of people with epilepsy have a need for improved and more appropriate levels of information giving by health professionals in both primary and secondary care
Carers’ perceived self-efficacy expectations in seeking information are positive but they do not always feel listened to
Carers’ prefer to receive information in a one-to-one setting but also need information from formats other than leaflets
Carers’ perceive barriers to having their information needs met, such as their needs being unrecognised in relation to the person with epilepsy.
In the past 20 years there has been considerable growth in the provision of palliative care services. The shift in emphasis from hospice and hospital care to the development of community services has been significant. This enables people to be cared for at home and is in keeping with Government agenda. While this may be beneficial for the patient and fit in with the wishes of the family, it is likely to put heavy demands on the coping resources of individual carers. The views of service users are of paramount importance when discussing service evaluation and patient, family and carer empowerment. This research presents the findings of an evaluation of the domiciliary occupational therapy service provided for patients in the palliative stage of cancer care in North and West Belfast from the perspective of the patients and carers. For the purpose of this study, the palliative stage of cancer care is defined as the point from which the patient is no longer responsive to curative treatment, until death. A sample of 30 patients and their primary informal carers were selected using purposive sampling. A structured interview was carried out with both the patients and their carers to obtain views. Results suggest that although both patients and their carers value the service provided and report high levels of satisfaction, there are gaps identified in service provision and a lack of clear information among patients and their carers about the role of the occupational therapist and the range of services they can provide. There is a need to build upon the good work being done by domiciliary occupational therapists in the area of palliative cancer care and increase education and resources to ensure that a patient-centred, holistic, approach to care is used, addressing both the needs of the patient and their carers.
ICT enabled Service Integration for Independent Living (INDEPENDENT) is an ICT - PSP project funded under objective 1.3 ICT for ageing well/independent living. Work has started as early as February 2010 and expected to finish after 3 years. INDIPENDENT will address current limitations of telehealth and telecare platforms to serve needs for support and delivery of support to the elderly which is not limited to a single sector (healthcare or social care) but spans the two sectors and empowers informal carers and the third sector to participate in delivery of support. This paper will discuss the Greek experience when drafting pilot scenarios that fit into the project's goals.
The National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP) have reported that 21% of the U.S. population provides family caregiving services to someone over 18 years old. Seventy-nine percent (79%) of these caregivers provide care for someone aged 50 or older. The majority of caregivers work full or part-time, and nearly two-thirds of employed caregivers make work-related adjustments in order to provide care (NAC & AARP, 2004). This article examines eldercare issues of employed caregivers, identifies current public and private policies addressing caregiver needs, presents a process model to assist organizations in creating family-friendly workplaces, and suggests social work roles that support family caregiving.
This study investigated the effectiveness of a structured telephone intervention for caregivers of people diagnosed with poor prognosis gastrointestinal cancer to improve psychosocial outcomes for both caregivers and patients. Caregivers of patients starting treatment for upper gastrointestinal or Dukes D colorectal cancer were randomly assigned (1:1) to the Family Connect telephone intervention or usual care. Caregivers in the intervention group received four standardized telephone calls in the 10 weeks following patient hospital discharge. Caregivers' quality of life (QOL), caregiver burden, unmet supportive care needs and distress were assessed at 3 and 6 months. Patients' QOL, unmet supportive care needs, distress and health service utilization were also assessed at these time points. Caregivers (128) were randomized to intervention or usual care groups. At 3 months, caregiver QOL scores and other caregiver-reported outcomes were similar in both groups. Intervention group participants experienced a greater sense of social support (p = .049) and reduced worry about finances (p = .014). Patients whose caregiver was randomized to the intervention also had fewer emergency department presentations and unplanned hospital readmissions at 3 months post-discharge (total 17 vs. 5, p = .01). Conclusions: This standardized intervention did not demonstrate any significant improvements in caregiver well-being but did result in a decrease in patient emergency department presentations and unplanned hospital readmissions in the immediate post-discharge period. The trend towards improvements in a number of caregiver outcomes and the improvement in health service utilization support further development of telephone-based caregiver-focused supportive care interventions.
This strategy identifies the actions that the UK Government plans take over the next four years to ensure the best possible outcomes for carers and those they support. Over the summer of 2010, the Department of Health sought views on what these priorities should be. Over 750 responses were received, representing the views of over 4,000 carers. These views are summarised in an Annex and quotes from respondents are included in the strategy. Key messages included: the need for better and timely access to health, social care and financial information; often feeling excluded by clinicians; finding accessing assessments overly bureaucratic and slow; feeling forced to give up work to care; neglecting their own health and well-being; the need breaks from caring; the value of Carer’s Allowance is considered inadequate; and more needs to be done to identify and support young carers. Four priority areas have been identified for the strategy: supporting those with caring responsibilities to identify themselves as carer
Purpose. To highlight the importance of the spouse in stroke rehabilitation. Stroke not only affects the patients, but also their families, but rehabilitation practice is still primarily focused on the patient only.
Method. Analysis of the position of the spouse and possible consequences of stroke for the spouse, based on the literature.
Results. Three roles of spouses are described: (i) the role of caregiver, as the spouse often provides extensive and comprehensive care for the patient; (ii) the role of client, as this informal care may lead to physical and emotional strain; and (iii) the role of family member, as the stroke affects the interpersonal relationships within the family system, not least the emotional and sexual relationship between the partners. This analysis provides an understanding of problems experienced by spouses as roles conflict and identifies topics for assessment and interventions directed at the spouse in the acute phase, rehabilitation phase and chronic phase of stroke.
Conclusion. We support a family-centred approach in which the strengths and needs of all family members, the patient with stroke included, are considered throughout all phases of the rehabilitation process.
The Committee welcomes the Government's plans to replace the current system of benefits for carers with one that will differentiate between the support a carer needs because they have no income, and the support they need because of other costs relating to caring responsibilities. However the lack of a timetable for the reforms is a major concern in times of increasing economic uncertainty.
This document is intended to compliment the Cancer Plan by focusing on patient/public needs in relation to cancer; emphasising the nursing contribution to the care of people with cancer and their carers; and recognising nurses' development needs in caring for people with cancer.
The Essence of Care benchmarks are a tool to help healthcare practitioners take a patient-focused and structured approach to sharing and comparing practice. There are 12 benchmarks in total. This document provides the benchmarks for pain, so that people and carers experience individualized, timely and supportive care that anticipates, recognizes and manages pain and optimizes function and quality of life. It starts by considering the general indicators that apply to every factor: people’s experience; diversity and individual needs; effectiveness; consent and confidentiality; people, carer and community members’ participation; leadership; education and training; documentation; service delivery; safety; and safeguarding. It then lists the factors specific to pain, together with their supporting indicators. The factors are: access; people and carer participation; assessment; care planning, interventions, evaluation, review and prevention; knowledge and skills; self-management; partnership working; and service evaluation and audit.
This article reports on the results of a qualitative study (in-depth interviews) carried out in the United Kingdom as part of a larger (two-phased) study investigating the experiences, health and future perspectives of older parent carers (six mothers and two fathers) of offspring with learning disabilities over a prolonged period of time. The objectives of this article are twofold: (i) to present a conceptual framework, grounded in the experiences of older parent carers who participated in this research and; (ii) to come to a more in-depth understanding of older parent carers’ experiences of caregiving, and views on their own future. A detailed analysis of the data revealed important issues with regard to prolonged caregiving. Overall, older parent carers felt that they lacked support, information and practical resources throughout their caregiving career. Some parents continued in their caregiving role despite their deteriorating mental and/or physical health as there appeared to be no alternative, and most parent carers expressed that they were unable to think ahead to their own future and needs owing to the absence of suitable care alternatives. The findings suggest that there is an urgent need to review how individuals with learning disabilities and parent carers are supported throughout their lifespan.
After a damning report [The state of social care in England 2005-6] which revealed the increasing burden on friends and family members who support people with care needs, Amy Taylor, Mary Garboden and Simeon Brody look at the reasons behind the crisis and whether it is retrievable.
This article is part one of a three-part series designed to help nurses help caregivers.
Families provide most of the care for older adults with chronic illnesses and disabilities. Estimates vary, but as many as 43.5 million Americans currently provide care for a person over 50. Because care giving for seriously and chronically ill people carries well-known physical, emotional, and financial risks, with consequences for the older adults as well as the caregiver, it's important to assess and address a family caregiver's needs, strengths, and limitations. Nurses have the training, skills, and opportunities to carry out these assessments.
Objective: Prevailing measures of subjective caregiver burden either have no overall summary score or do not consider the relative importance caregivers attach to different dimensions of burden. Our aim was to assess which dimensions informal caregivers perceive as being important to their overall burden from care giving.
Design: Cross-sectional.
Subjects: Data were pooled from two Dutch samples of primary informal caregivers covering a wide range of chronic care-giving situations: caregivers for stroke survivors (n = 196) and caregivers for individuals with rheumatoid arthritis (RA) (n = 131).
Main measures: Subjective burden of care giving was assessed using the Caregiver Reaction Assessment (CRA) and the Self-Rated Burden scale (SRB).
Results: In the total sample four of the five dimensions of the CRA were found to contribute to the overall subjective burden experienced by informal caregivers. In the individual stroke and RA samples only two of the five dimensions emerged as relevant. SRB scores were significantly higher for caregivers of stroke patients, but no differences were found for the five dimensions of the CRA between the two samples.
Conclusions: The dimensions of CRA are not equally important to the overall subjective burden of informal caregivers. To assess overall subjective burden, a measure based on a caregiver's own assessment of burden such as SRB needs to be used in addition to prevailing measures.
Social networks are seen to influence the use of health and social care services. In a secondary analysis of data from a longitudinal study of befriending of carers of people with dementia, the authors studied the relationship between network type and support from family/friends, voluntary sector befriending and residential/nursing care. Using Wenger's typology of social networks, finding suggest that the pattern of support use varies by differences in the structure of networks. It is recommended that questions on social networks should be widely incorporated into carers' assessments to help identify need for social support interventions and to enable the sensitive selection of appropriate types of carer support to be provided.
This article describes a nurse led service operating on three adult acute psychiatric wards in a hospital in South London. On each ward a member of the regular nursing staff spends one day meeting with families and carers. A case is made for the need for such a service, and its aims are described. An example of a series of meetings with the relatives of one patient is given, illustrating the benefits of this type of service.
Adults with severe and enduring mental health problems are amongst the most marginalised and vulnerable people in our society. In providing care for these individuals, mental health professionals may potentially overlook the fact that many of these people are also parents: • There are an estimated 50,000 – 200,000 young people in the UK caring for a parent with mental health problems. • Many of these young people will provide help and support for a parent. • Some of these young people will be providing care beyond a level that is appropriate for their age. They will be ‘young carers’. • This inappropriate level of care puts young carers’ own physical and mental health at risk. These children and young people may come into contact with a variety of professionals in their daily lives, and some will be known to mental health professionals, but the majority will be unknown either to statutory or voluntary services. Education professionals may come across many of these individuals, but may not recognise them. The young carers may not self-identify as young carers, and may not wish to identify themselves to others. Nevertheless, some degree of intervention is required, since young carers are likely to suff er problems with school, such as: • regular lateness or absence; • difficulty completing assignments on time; • disruptive behaviour; • difficulty developing friendships; • being bullied; and • leaving without any formal qualifications.
Away from formal mental health and education settings, many young carers are able to find help and support in one of the many young carers’ services that operate across the UK. These services may play an important part in providing young carers with an opportunity to fi nd: • respite from care duties; • leisure time activities; • one-to-one support; and • the chance to socialise with peers.
However, many statutory and voluntary services coming into contact with these carers may not feel confi dent in providing advice or support on mental health and mental illness. Hence, MyCare is an investigation of the experiences and needs of young carers aged 9-25 whose parent or parents may suffer from severe mental illness. It is an explorative investigation of the experiences of young carers of parent(s) with severe mental illness, their needs, and how professionals from a variety of disciplines respond to these needs.
Research on family caregiving has focused on the quantitative as opposed to the qualitative investigation of the impact of caregiving on the health and psychological well-being of family carers. In this study, interpretive phenomenological analysis (IPA) was used to explore the subjective experience, needs and appraisals from the perspectives of family carers of older adults. Six family carers were recruited from a carer support group; one male and five female primary carers to an elderly family member with age or disease-related impairment. Two super-ordinate themes emerged from the analysis of interview transcripts. The first was labelled ‘feeling helpless to being wise’. The second, ‘perceptions of support’. The latter related to family carers' personal coping processes and self-constructions as carers, and to family carers' perceptions of support and predominant challenges of support seeking. Findings pointed to an evolving self-construction and explanatory framework for the tasks of caring among family carers at different points along a caring trajectory, with evidence of positive reappraisal processes. The findings also support IPA as a viable methodology for supplementing the quantitative coping literature on family caregiving and emphasise the importance of understanding the elements of ‘support’ from the perspective of being a family carer.
The approaching financial challenges within health and social care are well heralded and will inevitably cause strain in the care system. It is likely that in the name of efficiency there will be reductions in hospital in-patient stays and a reluctance by local authorities to extend their provision for those with significant care needs. Indeed, the context is being set for further exploitation of carers in the coming years.
Community dwelling people with dementia and their informal carers experience a lot of problems. In the course of the disease process people with dementia become more dependent on others and professional help is often necessary. Many informal carers and people with dementia experience unmet needs with regard to information on the disease and on the available care and welfare offer, therefore they tend not to utilize the broad spectrum of available care and welfare services. This can have very negative consequences like unsafe situations, social isolation of the person with dementia and overburden of informal carers with consequent increased risk of illness for them. The development of a DEMentia specific Digital Interactive Social Chart (DEM-DISC) may counteract these problems. DEM-DISC is a demand oriented website for people with dementia and their carers, which is easy, accessible and provides users with customized information on healthcare and welfare services. DEM-DISC is developed according to the human centered design principles, this means that people with dementia, informal carers and healthcare professionals were involved throughout the development process. This paper describes the development of DEM-DISC from four perspectives, a domain specific content perspective, an ICT perspective, a user perspective and an organizational perspective. The aims and most important results from each perspective will be discussed. It is concluded that the human centered design was a valuable method for the development of the DEM-DISC.
More than three-fourths of older adults with developmental disabilities and mental illness live in the community with aging parents, the majority of whom do not complete plans for the residential, financial, and legal future of their offspring. The authors used a true experimental design to evaluate the effectiveness of a six-week psychoeducational group intervention with 27 older mothers. Data collected in pre- and posttest telephone interviews were analyzed with repeated measures MANCOVA to test five hypotheses. Significant multivariate effects were found for mothers' knowledge and awareness about permanency planning, confidence and competence to plan, planning activities, and stage of planning. Findings support use of group interventions with older parents and underscore the need for professional education about planning for adults with special needs.
Objective This study investigated the preferences of patients, family and staff for single or shared rooms in a UK hospice.
Method Semistructured interviews were conducted with patients, informal carers and staff at a hospice, focusing on room type preference.
Results 14 current and former hospice inpatients, 15 patients attending the hospice day centre, 23 carers of current and former inpatients and 10 hospice staff were interviewed. Patients most often stated a preference for a shared room, especially if they had experience of being in this room type at the hospice. The main reason for this preference was the company of others. Patients preferring single rooms cited the benefits of increased privacy, reduced noise and private facilities. Other patients said their room preference would depend on how ill they were. Carers valued the social contact and increased staff presence in shared rooms, but felt that single rooms were easier for visitors and more appropriate when patients reached the end of life. Staff found it easier to observe patients in a shared room, and to maintain privacy and confidentiality in a single room.
Conclusions The study concludes that single and shared rooms should be available in a hospice. Innovative planning can enable the social benefits of shared rooms to be maintained without compromising patients’ privacy and dignity.
BACKGROUND: Previous research has focused on the longer term needs of 'new' stroke patients at fixed time intervals after the event, but neglected those of stroke patients who may have had the event many years earlier.
OBJECTIVE: To identify the long-term support needs of patients with prevalent stroke, and their carers identified from practice stroke registers.
DESIGN OF STUDY: Patients and their carers were invited to attend focus groups at the university, a nursing home or in the community.
SETTING: Seven practices in South Birmingham. Adults (18+) with a validated record of stroke.
METHODS: Focus groups were audio-taped and data analysed using a constant comparison method.
RESULTS: Twenty-seven patients and six carers participated in the study. Three major themes emerged: emotional and psychological problems; lack of information available for patients and their families; the importance of Primary Care as the first point of contact for information or problems, even if these were non medical.
CONCLUSIONS: Better methods of providing information for long-term survivors of stroke, and for addressing their emotional and psychological needs are required. Primary care could be a key setting for helping to provide more inclusive services for both patient and carer.
Aim. This paper presents findings from a study that was designed to understand, from the perspective of cancer patients and their family caregivers, what spiritual care is wanted from nurses.
Background. Distressing and transformative spiritual responses to living with cancer have been documented. Although there is momentum for providing spiritual care, previous research provides scanty and conflicting evidence about what are the clients’ wishes or preferences with regard to receiving spiritual care from nurses.
Methods. A convenience sample of 156 adult cancer patients and 68 primary family caregivers, most of whom were Christians, independently completed the Spiritual Interests Related to Illness Scale and a demographic form, both of which were self-completed questionnaires.
Results. A variation in responses to items about nurses providing spiritual care therapeutics was observed; means and medians for these items mostly fell between 2 (disagree) and 3 (agree) on a scale of 1–4. Generally, therapeutics that were less intimate, commonly used, and not overtly religious were most welcomed. No significant differences were found between patient and caregiver preferences. A modest, direct correlation was observed between frequency of attendance at religious services and increased preference for nurse spiritual care.
Conclusion. For both patients and caregivers, nurses must be sensitive to providing spiritual nurture in ways that are welcomed.
Background: Malignant fungating wounds may have significant physiological, psychological and emotional consequences on patients and their families. This study focuses on understanding the lived experiences of patients with a malignant fungating breast wound and their informal carers.
Method: The methodological framework of interpretative phenomenological approach according to Heidegger was used. Nine patients were interviewed from January until November 2009.
Results: The results demonstrate that most of the patients and their informal carers were on their own while struggling with the erosion of their physical boundaries. The women report a lack of information and advice about how to manage the wound as well as the physical and social limitations imposed on them because of copious wound exudate, odour and bleeding. The women used many different methods and approaches to maintain the boundedness of the body.
Conclusion: This study contributes to understanding that losing control over the body meant for the women losing control over themselves and their lives. The unboundedness was demonstrated through the symptom experiences. Therefore the care of women needs strategies that are integrated in a palliative, holistic, empathic approach. In particular skills for palliative wound care among medical and nursing staff need to be developed as the women and their carers report a lack of information and advice about how to manage the wound as well as the physical limitations and psychosocial consequences of struggling to maintain the boundedness of the body.
The Changing Workforce Programme has been set up to promote new ways of working which will both improve patient care and be more attractive to staff. “New ways of working” covers a variety of approaches to job redesign: new roles may be created or existing roles may be adjusted to include additional responsibilities. These new or changed roles will probably cross traditional demarcations: between individual professions, between registered and support staff, between clinical and non-clinical staff and between health and social care. One of the pilot sites concerns the care of stroke patients. This publication is a compilation of examples of new ways of working in stroke care which have been introduced by a range of providers. The aim is to illustrate how new roles can meet patients’ needs more effectively, while at the same time giving staff more opportunities to develop their skills and experience.
There are at least six million unpaid carers in Great Britain and Northern Ireland, and 1.25 million provide at least 50 hours of care a week.1 One in five households contains a carer.2 Sixteen per cent of carers are over 65, and half of those being cared for are 75 or older.3 Many are ‘round the clock’ carers. Carers are the bedrock of the care and support system; the vast majority of care needs are provided by unpaid carers at home. The economic value of unpaid support that carers provide to our society has now reached £87 billion a year according to a recent study,3 potentially equivalent to the cost of providing another NHS. This contribution of carers deserves recognition and an understanding by health professionals that they act as partners in care. Without these carers, many more people would need long-term admission to hospital care, home placements or expensive home support packages.
Background Care for older people with dementia (OPWD) is a major concern across all care settings. Ambulance services are in the spotlight as pressures on emergency services and calls for admission avoidance are policy priorities. Around 1/3 of emergency call-outs are to people 75 and over, a significant proportion of whom may have dementia. There is a perception that dementia may be an issue but we do not understand how much this affects use of emergency services.
Methods We reviewed 358 ambulance service paper-based patient care records (PCRs) to test the feasibility of using them as a source of information about ambulance service use by OPWD and, conducted critical incident reviews of 999 callouts to understand factors associated with emergency ambulance call-outs. We took our emerging findings to a stakeholder meeting where we established areas of consensus and key research questions.
Results Fifty-two (14.5%) of the PCRs reviewed had dementia recorded, this is in line with current prevalence estimates for ≥75-year-olds. However, we had to use paper PCRs as dementia recording in ePCRs is more complex. The critical incident reviews identified a wide spectrum of experience of emergency ambulance use by OPWD and their carers, from pre-diagnosis through to end-of-life scenarios. It was new for many of the stakeholders to think about the role of ambulance services in the care of OPWD. There was consensus that the contribution family and paid carers make in decision making; explaining the OPWD's needs and changed condition, is underused.
Conclusions There is little current research that understands what ambulance clinicians are doing with respect to caring for OPWD. Research questions should focus on how communication between the person with dementia, formal/informal carers, healthcare professionals and emergency services affects the care provided for older people with dementia during and immediately after urgent care events.
Background Government guidelines promote the use of mainstream mental health services for people with intellectual disabilities whenever possible. However, little is known about the experiences of people with intellectual disabilities who use such services.
Materials and Methods Face-to-face interviews with service users, carers and community nurses were completed and analysed on a case by case basis using interpretative phenomenological analysis. The results were followed up in focus groups with service providers.
Results Positive aspects included the provision of respite, particularly for carers, and good basic care. These were outweighed by a perception of the admission as disempowering and lacking in flexible treatment provision. Accessing help emerged as a major problem, as well as the prospect of staff neglecting the specific needs of people with intellectual disabilities.
Conclusions While there were some indications of improvements in line with recent policies and guidance, mainstream services seem a long way off realizing aims of easy accessibility, person-centred practices and active partnership with intellectual disability services.
Scotland's National Dementia Strategy calls for people with dementia and their carers to give voice to what they see as the priorities for dementia research. We sent questionnaires on dementia research priorities, locus and type of research, desired outcome measures and willingness to volunteer, to two groups of dementia research stakeholders: (1) people with dementia and their carers who may or may not be participating in research and (2) those who are directly participating in research. We also made the questionnaire available on a national dementia research website. Five hundred and fourteen responses were received. The top four topics rated by importance were identical across all three groups of respondents: early detection (38.1%), drug trials (14.2%), studies on people living at home (9.7%) and study of carers (6.0%). The data can help shape the dementia research agenda, but more information needs to be made available to the public about other potential research areas.
Background: Tailor-made care in dementia requires an individual needs assessment. The Camberwell Assessment of Need for the Elderly (CANE) was developed to assess needs of older people with mental disorders. In this study the validity and reliability of the Dutch version of the CANE were studied among community-dwelling persons with dementia and their informal carers.
Method: Interviews were carried out with 236 people with mild to severe dementia and 322 informal carers; 69 informal carers were interviewed twice. Construct and criterion validity and test-retest reliability of the CANE were studied using data for informal carers. Construct validity was also studied for CANE ratings of people with dementia.
Results: The construct validity of the CANE was good among people with dementia and informal carers. Criterion validity could be studied for 76.9% of the CANE items, and all significant correlations were convergent. Test-retest reliability of the CANE varied from poor to very good and was best on domains where needs were explicit and problems well defined.
Conclusions: Use of the Dutch version of the CANE among community-dwelling people with dementia and their carers is supported by the study results, with the study showing acceptable construct and criterion validity and test-retest reliability of the CANE.
Background: Informal care from relatives provides the foundation of care for people with Alzheimer's disease (AD). It is important to understand the conditions under which carers perform their, often neglected, task. The dementia carer's survey aimed to identify carers' needs, differences between countries with regard to dementia care and the level of satisfaction of carers with utilised services.
Methods: The survey was conducted through Alzheimer Europe's member organisations in France, Germany, Poland, Spain and UK (Scotland). The survey was in the form of a questionnaire, and topics addressed included: demographics of carers and people with AD; time spent caring; disclosure of diagnosis; symptoms prompting diagnosis; diagnostic process; current and most distressing symptoms; carers' information requirements; evaluation of services.
Results: Each country had ∼200 responders. Time spent caring increases with disease severity, and 50% of carers of people with late-stage dementia spent more than 10 h/day caring. Activities of daily living and behaviour were cited as the most problematic symptoms, reported by 68% and 50% of carers, respectively. Provision of information on all aspects of AD was felt to be inadequate, with key services such as home support not available to the majority of carers. Only 17% of carers considered the level of care for the elderly in their country as good.
Conclusions: Further development of services and information provision are required to help carers in their everyday caring, including coping with problematic symptoms influencing areas such as activities of daily living and behaviour. Copyright © 2008 John Wiley & Sons, Ltd.
This is a revision of the framework first published in 2010, and is a whole system guide that provides information, guidance and signposts in respect of personalisation and personalised services and support for people with mental health needs. The framework is organised in 12 broad sections: person-centred systems and approaches; information and advice. personal motivation and self-help; support for managing personal budgets; support for carers; fair access and equality; creative commissioning; partnership for inclusion; prevention and early intervention; leadership for all; workforce and organisation development; stories and personal accounts; and outcomes and quality framework.. Each section includes practical suggestions of things to put into place to achieve specific goals. Pointers to good practice and sources of advice and information are provided throughout. The framework can be used as a tool to check what needs to be in place for personalisation in mental health.
The process of dying in the 21(st) Century is often protracted. An aging population and increasing long-term conditions have resulted in a need for increased palliative and end-of-life care. Formal healthcare services are unable to fully provide the level of support required at the end of life. Increasingly therefore, family caregivers are being relied upon to provide often complex interactions and support to people who are dying. More is now understood about the activities they engage in and their potential support needs, yet, the carer role is an elusive concept that many carers in palliative and end-of-life care settings do not recognize or identify with. This situation has implications for the interactions they may share with health and social care professionals. Drawing on current literature; policy, and a qualitative study of the perceptions of family caregivers in a palliative care setting, this paper will seek to consider the role of family caregivers in palliative care settings and to explore the ways in which health and social care practitioners can assist them in undertaking this role.
In the UK, half a million people care for people with severe mental illnesses (Princess Royal Trust for Carers 2002). This article reviews the findings of a study of the views of 13 carers of people self-identified as having schizophrenia on the nature and extent of their role, and its effect on their lives and identities. According to these findings, carers experience stress and illness, and think that the support they receive from professionals is inadequate. As a result, they think that help and psychotherapeutic interventions, such as family therapy, should be more accessible.
This literature review on choice in mental health was commissioned by the Department of Health in July 2005 and submitted to the Department in January 2006. The main part of the review looked at the English language literature on choice in mental health over the past five years. It aimed to identify in particular what tools there are to help people make meaningful choices; what media are effective in facilitating decision-making; and to what extent methods such as advance directives might be used. The review also included a consultation exercise and an overview of how choice is reflected in national policy and guidance in four other countries.
Mental health service users' ability to make choices may be constrained by their own limitations (lack of knowledge, information, capacity), others' shortcomings (lack of appropriate and available services, staff unreceptive to the principle of user choice, restrictive referral processes), and by legal constraints imposed on those who are subject to compulsion under the Mental Health Act 1983. How service users make and communicate their choices also needs to be considered; there may be particular problems for people with learning difficulties, those with some form of mental impairment, those with communication difficulties due to auditory or visual impairment, people who communicate non-verbally, and those for whom English is not their first language. In addition, the choices of carers may be at odds with what service users would choose for themselves.
This booklet for carers gives information about dementia, caring for someone with dementia and the help available to carers. Original edition researched and written by Maggie Jee and Liz Reason. This edition has been developed with the valuable assistance of Help the Aged, Age Concern (England), the Alzheimer's Society, The Princess Royal Trust for Carers, Dementia Voice and the South London and Maudsley NHS Trust. Please note that there may be changes in the benefits system and in social services after publication of this booklet, so you are advised to check benefits and services issues with either your local Citizens Advice Bureau or one of the other agencies listed.
This comprehensive guide is primarily aimed at helping carers of people with dementia to cope with the responsibilities they have to face. It outlines the medical background to dementia, highlighting the various forms of the condition, how it develops and some of the characteristic behaviours of people who are suffering from the condition. The emotional side of being a carer for someone with dementia is explored in the second part of the report, followed by a strong endorsement to seek and ask for help from various sources. The need to support the mental and physical well-being of dementia sufferers is addressed and advice on how to empathise with anxiety and stressful situations is outlined. The solutions for some common practical problems such as helping dementia sufferers to dress, eat and cope with incontinence are also offered. The final part of the guide covers legal matters and also provides a guide to organisations that can offer further help.
The aim of the present paper was to examine some views and experiences of dementia among older South Asian people, as well as their families and carers, and to explore central issues of service support. Data were collected in Scotland through interviews with 11 professionals working with South Asian people with dementia, and four case studies of South Asian people with a diagnosis of dementia, as well as their families and carers. The case studies demonstrated overwhelmingly negative experiences of dementia, with poor quality of life, desperate needs for support, lack of access to appropriate services, little knowledge of dementia, and isolation from community and family life. The interviews with professionals described a strong demand for services, a need to develop awareness and knowledge about dementia in South Asian communities, and a need to promote more culturally sensitive, individually responsive services. Similarities between South Asian people and the non-South Asian population include stress on carers, increasing isolation, problematic diagnostic practices, lack of knowledge and demand for service support. Differences include limited use of non-National Health Service (NHS) support, dealing with later stages of dementia at home, particularly negative views about residential care, culturally based attitudinal differences and use of the term 'dementia' in English as neutral rather than stigmatising. The present authors suggest that there is little knowledge and experience of dementia in South Asian communities, as well as restricted access to appropriate services, despite the efforts of voluntary sector and NHS special projects. There is demand for services, especially at home. Services need to develop individual responsiveness for effective working in a diverse society.
This study examines the relationship between caregiver characteristics and caregiver well-being as comprised of two components, activities of living and basic needs. The role of depression in predicting caregiver well-being is explored using a sample of caregivers of family members with chronic illness. Using a path-analysis model, multivariate findings suggest that depression explains 56% of the variance in activities of living and 64% in basic needs. Path analysis further identifies depression as a mediator between stress and well-being. Implications for research and practice are highlighted.
Caregiving for family members is often described as a 36-hour day. Previous literature has suggested that family caregivers have little time to attend to their own health needs, such as participating in leisure-time physical activity. Using data from the Health and Retirement Study, we analyze whether time-allocation decisions reflect a conflict between time devoted to informal care and time devoted to self-health promotion through physical activity. The empirical model is a system of four correlated equations, wherein the dependent variables are hours spent caregiving, frequency of moderate and vigorous physical activity, and hours spent in paid work. Results from joint estimation of the four equations indicate limited evidence of a competition between time spent in caregiving and frequency of physical activity. Parental factors that increase allocation of care time to parents do not comprehensively induce reductions in the frequency of any type of physical activity, or in hours of work, among either men or women.
White paper setting out detailed proposals to establish a new statutory framework to ensure that those with severe mental disorder get care and treatment to meet their needs and, secondly, that the public is protected from those who may, occasionally, pose a threat to their safety. The proposed changes will affect: local and health authorities; service providers in the statutory, independent and voluntary sectors; and people with mental disorders and their carers. Part 1 of the paper presents the legal framework, and Part 2, in a separate booklet, looks at high risk patients.
The experience of older age should be a positive one. But whilst many older people enjoy the chance for more leisure, learning new things, or spending time with friends and family, others experience isolation and exclusion. The consultation highlighted three key ways in which respondents say provision needs to improve if older people are to enjoy a better quality of life: joined up services are key; intervening early is important, and investment in low level prevention can reduce costlier interventions later; and older people generally know what they need and want, and they should be involved in the design and – where practicable – the delivery of services. This report is split into three sections: a summary of the issues and challenges; social issues from crime to housing, from transport to employment; and the specific needs of carers, those from minority ethnic communities, and at the way in which support for excluded older people is funded.
Young carers are a global phenomenon. The UK estimates it has in excess of 175 000 young carers, the onset of their caring role often occurring between 8 and 10 years of age. Of these, 17 000 are caring for a parent who has severe mental illness, a significant factor for children entering the health and social care system, as up to 60% experience mental health difficulties themselves. This paper reports on the outcome of a participatory project aimed at better understanding the needs of young people. A World Café event was hosted, bringing together those involved in promoting the mental health of young people in a partnership consortium. The event was led by young service users and carers. Important issues raised by the young carers were being excluded from being included; stuck in the here and now, ignoring the future; a hole in the net; and ensuring the hidden is on the agenda. The World Café gave the university the privilege of insight into what local young carers need to improve their mental health, and more importantly, how we can utilize our skills to help them achieve their goals.
The majority of adults with a learning disability live with family carers, many of whom are ageing and have support needs of their own. Planning for the future thus becomes the key to preventing a crisis situation when family care is no longer viable because of death or ill health. Existing knowledge and practice are largely based upon the perspective of professionals and carers. This study explores the views, aspirations and concerns of adults with a learning disability, about living at home and planning for the future. Findings show that participants were very aware of the need for alternative housing or support in the future and had clear preferences about their future options. However, they also showed extensive concern for their family carers and this often impacted on their willingness to plan for the future or to move to alternative housing. Their demonstrable awareness of the inevitable death or ill health of family carers, and willingness to engage with the implications, emphasize the importance of involving adults with a learning disability in planning for their future, as well as providing them with bereavement support.
PURPOSE: To establish the validity and reliability of a questionnaire measuring the experience of informal carers of patients with stroke through acute and rehabilitation hospital treatment.
METHOD: The settings were 6 stroke units in the United Kingdom. Participants were relatives of patients with stroke. The Stroke Carer Experience Questionnaire (SCEQ) asks about specific elements of care and was constructed using qualitative analyses. Convergent and discriminant validity were assessed by correlations with other questionnaires and variables. Criterion validity was examined by correlations with indices derived from qualitative data. Temporal stability was assessed by correlation with a repeated administration. The performance of the questionnaire was compared with that of the Carer Hospital Satisfaction Questionnaire (Carer HospSat).
RESULTS: Seventy-two (49%) of 147 questionnaires were returned. Test-retest reliability, assessed by a questionnaire mailed 7 days after the first completion, was 0.77. The correlation with the Carer HospSat was 0.57, indicating convergent validity. The SCEQ did not correlate with demographic variables or functional ability, which indicated discriminant validity. Significant correlations with indices derived from carers' qualitative descriptions evidenced criterion validity. The SCEQ detected specific negative experiences among carers with high global satisfaction scores on the Carer HospSat. In general, the SCEQ items were not strongly intercorrelated; only 6% of the intercorrelations were strong to moderate (30.6).
CONCLUSIONS: The SCEQ is preferable to existing questionnaires for carers of patients with stroke, because it has established validity and reliability and assesses service characteristics important to carers. It also identifies experiences in services that elude global satisfaction ratings. It is a promising instrument for identifying service strengths and unmet needs.
Increasing evidence suggests that early diagnosis and management of dementia-related symptoms may improve the quality of life for patients and their families. However, individuals may wait from 1-3 years from the onset of symptoms before receiving a diagnosis. The objective of this qualitative study was to explore the perceptions and experiences of problem recognition, and the process of obtaining a diagnosis among individuals with early-stage dementia and their primary carers. From 2006-2009, six Anglo-Canadians with dementia and seven of their carers were recruited from the Alzheimer's Society of Calgary to participate in semi-structured interviews. Using an inductive, thematic approach to the analysis, five major themes were identified: becoming aware of memory problems, attributing meanings to symptoms, initiating help-seeking, acknowledging the severity of cognitive changes and finally obtaining a definitive diagnosis. Individuals with dementia reported noticing memory difficulties earlier than their carers. However, initial symptoms were perceived as ambiguous, and were normalised and attributed to concurrent health problems. The diagnostic process was typically characterised by multiple visits and interactions with health professionals, and a diagnosis was obtained as more severe cognitive deficits emerged. Throughout the diagnostic pathway, carers played dynamic roles. Carers initially served as a source of encouragement to seek help, but they eventually became actively involved over concerns about alternative diagnoses and illness management. A better understanding of the pre-diagnosis period, and the complex interactions between people's beliefs and attributions about symptoms, may elucidate some of the barriers as well as strategies to promote a timelier dementia diagnosis.
This book reports on the first research study to reflect the experiences of carers of people with learning disabilities following the implementation of the 1995 Carers Act.
The research found that very few carers of people with learning disabilities are actually in receipt of their rights under the Carers Act, and the authors look at why this is the case. They also examine the level of satisfaction of those carers who had received a carer's needs assessment. The research follows what actually happens to carers once an assessment has taken place, and carers were re-interviewed approximately one year after their carer's needs assessment, to follow up the outcomes. The report deals clearly with complex issues, and contains many case examples, providing practical recommendations for the development of better service delivery.
The report adds to the understanding of such families, and highlights the mismatch between policy, practice and need in this area. It is important reading for carers and families with a member with a learning disability, carer support officers, social workers, care managers and other professionals who work with people with learning disabilities. It should also be read by policy makers in both local and central government.
In Australia, many people ageing in their own homes are becoming increasingly frail and unwell, approaching the end of life. A palliative approach, which adheres to palliative care principles, is often appropriate. These principles provide a framework for proactive and holistic care in which quality of life and of dying is prioritised, as is support for families. A palliative approach can be delivered by the general practitioner working with the community aged care team, in collaboration with family carers. Support from specialist palliative care services is available if necessary.
The Guidelines for a Palliative Approach for Aged Care in the Community Setting were published by the Australian Government Department of Health and Ageing to inform practice in this area. There are three resource documents. The main document provides practical evidence based guidelines, good practice points, tools, and links to resources. This document is written for general practitioners, nurses, social workers, therapists, pastoral care workers, and other health professionals and responded to needs identified during national consultation. Evidence based guidelines were underpinned by systematic reviews of the research literature. Good practice points were developed from literature reviews and expert opinion. Two ‘plain English’ booklets were developed in a process involving consumer consultation; one is for older people and their families, the other for care workers.
The resources are intended to facilitate home care that acknowledges and plans for the client’s deteriorating functional trajectory and inevitable death. At a time when hospitals and residential aged care facilities are under enormous pressure as the population ages, such a planned approach makes sense for the health system as a whole. The approach also makes sense for older people who wish to die in their own homes. Family needs are recognised and addressed. Unnecessary hospitalisations or residential placements and clinically futile interventions are also minimised.
Patient and family perspectives are vital in conceptualising quality of life in the dying (1). The principles of a 'good death' have been established (2,3), and multidimensional frameworks exist for understanding and evaluating end-of-life care (4). However, care often falls short of the ideal, or is offered late. To examine why, we set out to understand the holistic needs of 40 patients dying from lung cancer or cardiac failure and their carers, and to explore to what degree these needs were identified and addressed by service providers (5). We chose qualitative methods as they can best explore such personal and sensitive issues as death and dying (6), and undertook serial interviews for up to one year with patients, their informal carers, and the professional carers identified by the patient as being most involved. Palliative care research calls for innovative patient- and carer-centred qualitative methods to complement quantitative findings (7). Interviews with one patient with lung cancer presented an especially graphic althoughn not atypical account, and these interviews are presented here. Case studies can stimulate the imagination, provoke, and perhaps disturb (8). Medicine retains an educational focus on the individual patient. We follow this tradition by presenting multifaceted data around one person.
The present authors have developed a model for assessing caregiving-related problems and needs, the Economic, Social, Psychological and Educational Requirements Table (ESPERT). The model was based on an analysis of the international literature concerning caregiving-related problems, and current specific European and Italian legislation, as well as the authors’ own research results (which also permitted them to design a specific instrument for the general assessment of caregivers). This paper describes the socio-psychological and socio-political background prompting the development of the model, the general instrument for the assessment of caregivers and an example of its use in a sample of caregivers of cancer patients. In the example study, 80 caregivers of cancer patients were asked to complete questionnaires evaluating their state and trait anxiety, depressive symptoms, personality traits, and specifically, their neuroticism or emotional instability, caregiving strain and the degree of satisfaction with their lives. In addition to the specific information obtained about this group of caregivers, the present results show that the completion of the ESPERT makes it possible to identify the proportion of subjects at economic, social and emotional risk, and to decide rapidly what kind of resources/interventions can be implemented, bearing in mind the most balanced cost–benefit ratio.
Adults with long-term and multiple health conditions and disabilities are living longer. The age group most likely to need care – those aged 85 and older - is rising faster than the population as a whole. This report, the first in a series on adult care, describes a care system in which rising needs, reducing local authority spending, and reductions in benefits may be putting unsustainable pressure on informal carers and acute health services. It notes that local authorities’ total spending on adult social care fell 8 per cent in real terms between 2010-11 and 2012-13, and is projected to continue falling. The report highlights the main risks and challenges as the system is changed radically, some of which will be covered in more detail in future years. Among its key findings are: rising care needs and falling state spending; and that increasing pressures on other parts of the care and health systems; improvements are needed to the care system.
The aim of this study was to help develop support services for carers of people with dementia on admission to a district general hospital. Qualitative methodology was used in the form of individual semi-structured interviews. These interviews suggest that service developments need to take into account the individual need of each carer. Identified themes included communication, vulnerability of the carers and the need to develop a therapeutic relationship with the carer as well as the person with dementia. Recommendations for change include a letter introducing the dementia specialist nurse to be given to carers, a poster in wards across the trust to support the letter; and workshops on dementia care for staff with emphasis on the need to work in partnership with informal carers.
OBJECTIVE: To provide descriptive information about a short-term educational programme for rural carers of people with a mental illness, living in the Loddon Campaspe Southern Mallee region.
METHOD: The Carers Education Exchange Programme is a flexible, needs-based model that can be modified to cater for individual groups. It consists of a number of sessions on topics relevant to caring for someone with a mental illness, held over a period of several weeks. The programme is offered at locations throughout the region, making it accessible to carers in isolated, rural areas.
RESULTS: Feedback indicates that the benefits of participating in the programme include the reduction of isolation and stigma, increased understanding of mental illness, development of skills relevant to the caring role and the formation of supportive networks, both professional and personal.
CONCLUSIONS: Educational group programmes for carers are an effective way of providing both education and support. This programme can assist in reducing some of the distress and difficulties inherent in caring for someone with a mental illness. Carer well-being is enhanced by the promotion of self-care and a positive outlook.
Background and Purposes: Primary informal caregivers play a significant role in providing care to stroke survivors after having been discharged from the hospital. Our aims were to describe the characteristics of Thai stroke caregivers and to explore their needs while providing care to their stroke relatives. Methods: Using open-ended questions, we individually interviewed 20 caregivers of stroke survivors to identify their characteristics and their own needs. Additional field notes were made during all interviews. Results: Our findings revealed that the majority of Thai informal stroke caregivers in this study were female, mostly daughters, with the exception of 2 Thai primary stroke caregivers found to be nieces. The majority of caregivers provided care to their stroke relatives 24 h per day. The four major categories of informal rehabilitation were: physical, psychological, social, and spiritual rehabilitation activities. Assistance, information and social support were the three main needs of the caregivers. Conclusion: Based on these findings, appropriate nursing information and assistance focusing on rehabilitation and stroke caregivers’ needs should be provided to Thai stroke caregivers performing informal care to ensure that both patients and caregivers have the best possible quality of life.
INTRODUCTION: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly. METHODS: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in September 2010. RESULTS: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability. CONCLUSION: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.
Background This study aimed to develop an innovation to assist general practitioners (GPs) in Australia to proactively address the needs of caregivers of people with cancer. Method Six GPs were video recorded each consulting six actor-patients in their respective practices. All cases depicted caregivers of people with cancer. The patients were instructed to complete a Needs Assessment Tool for Caregivers (NAT-C), before the consultation. Actor-patients were instructed to present the NAT-C to three of the six GPs they consulted, selected at random. Two assessors independently reviewed each consultation performance using the Leicester Assessment Package (LAP). The practitioners and actor-patients focused on the value of the NAT-C and how it could be deployed to best effect in a subsequent ‘stimulated recall session’. ResultsThirty-four consultations were successfully recorded. The mean duration of consultations was 13 min. 47 sec. (range 6 min. 3 sec. to 22 min. 51 sec.). GPs differed in core competencies as measured by the LAP (P0.001), range 37–92%. However, they demonstrated no significant differences in performance (LAP scores) analysed by scenario (P = 0.99). The ‘generalised estimating equation’ (GEE) model identified an improved LAP score in consultations in which the NAT-C was used (average of 3.3 points; 95% CI: –3.99, 10.6), after controlling for the different GPs and scenarios, but this improvement was not statistically significant (P = 0.37). The participants felt that the NAT-C was beneficial and suggested how it could be further refined. Conclusions If this innovation had been formally tested in a randomised trial without assessing its impact on the consultation there might have been significant difficulties with administering the intervention in practice.
In Germany the community care system is still not developed to meet the needs of families with dementia. The Scottish need-assessment CarenapD (Care Needs Assessment Pack for Dementia) records the need status of persons with dementia and initiates a care plan. Also the needs of informal carers are measured. After translating the assessment into German language, its practicality and adaptability was tested in this study from the perspective of the professional user. Also was tested, how the CarenapD results interpret the community care. The study was conducted as Convergent Mixed Methods Design. CarenapD was used by 12 staff members of different care provider and 3 staff members of the inspector board of the health care insurance system. They assessed 55 persons with dementia two times within 4 months. A questionnaire and analyses of assessment results produce findings for the practicality and adaptability of CarenapD. The assessment user themselves gave practicality and adaptability of CarenapD good values. Otherwise inclusion of persons with dementia into the assessment process was poor and need results show that the communication between assessment user and family needs improvement. For a successful assessment process to record and achieve the needs of service user are more steps of improvement necessary.
In the UK, there are around 1.5 million carers of people with mental health problems providing substantial amounts of free care. Despite having a legal right to a ‘carer's assessment’, only a minority of mental health carers have had such an assessment. To try and understand why the uptake is so low, we undertook a small (n = 8) qualitative study exploring what mental health staff acting as ‘care co‐ordinators’ thought the barriers to, and facilitators of, carers' assessments might be, and how subsequent practice might be improved.We found that there was some confusion over the definition of ‘carer’ and over who should take responsibility for carer assessments. The main barriers to carers' assessments were the documentation used, the attitudes of staff (especially managers) and the fact that the needs of mental health carers often differed from those caring for people with a physical disability. Practice could be improved through: clarifying the definition of ‘carer’; education and training; redesigning the documentation; dovetailing service user and carer needs assessments; and through offering a wider choice of evidence‐based services as assessment outcomes. Improvements are unlikely to be successful, however, without the active support, expertise and engagement of carers.
Telecare devices have been put forward as a potentially effective intervention to benefit the well-being and functioning of informal carers of people with social care needs, and to reduce the negative effects of providing care to a family member or friend. Much of the evidence used to support this view is qualitative, and therefore does not provide good-quality evidence to answer questions about its effect on carer outcomes. This review aimed to document and evaluate the quantitative evidence base for the effect of telecare interventions on outcomes for informal carers. A systematic search was conducted between October 2009 and January 2010 to identify peer-reviewed and ‘grey’ intervention evaluations, using electronic databases and expert/interested party recommendations. Clear inclusion and exclusion criteria and a reliable screening process were applied to select papers for inclusion in the review, and a checklist was used to assess risk of bias for each evaluation. Of 1071 identified evaluations, seven fulfilled the inclusion and exclusion criteria. Of these, two were peer-reviewed, and the remainder were unpublished or internal reports. Included evaluations were heterogeneous; they had investigated diverse technologies and outcomes, using varied evaluation designs and measures. All included evaluations were rated as being of weak methodological quality, indicating risk of bias within the evidence base. The evidence tentatively indicated that telecare exerts a positive effect on carer stress and strain, but there is no evidence to indicate benefits on burden or quality of life. The evidence is conflicting about the effect of telecare on the amount of time carers spend on their caring duties, and on relationships between the carer, cared-for person and other family members. Additional good-quality evaluations are required to establish the effects of telecare on informal carer outcomes.
Written from an American perspective, this book tackles head on the powerful myths and discriminatory attitudes that underlie one of the unspoken moral disasters of contemporary life: that so many older people die, before their time, cut off from their family and their homes, unhappy and alone.
Drawing on the author's professional expertise as an independent living consultant and a decade of caring for his mother, the book offers down to earth, practical advice aimed at keeping elderly parents in their own homes for as long as possible. Having identified eight key elder care support 'rules', it explains how best to gauge the type and level of support required by an elderly parent covering both physical and psychological needs. Placing a strong emphasis on the quality of life, it describes how to avoid common assumptions about old age, how to determine what is 'normal' and 'abnormal' for the parent concerned and when and how to intervene. It describes the importance of forward planning in connection with financial and health matters and briefly describes arrangements such as the power of attorney, living wills and advance healthcare directives.
This film focuses on the work of Nicola James, a social worker for Surrey County Council. Nicola works with disabled young adults and their carers. She introduces us to Caroline Hunter, who cares for her son, who is autistic and has severe learning disabilities. Nicola’s work with the Hunter family demonstrates how considering the needs of both the service user and the carer can have a positive impact on the whole family.
BACKGROUND: Comorbid substance misuse in people with schizophrenia is associated with poor clinical and social outcomes. There are few studies of psychological treatments for this population and little long-term follow-up of their benefits. AIMS: To investigate symptom, substance use, functioning and health economy outcomes for patients with schizophrenia and their carers 18 months after a cognitive-behavioural treatment (CBT) programme. METHOD: Patients with dual diagnosis from a randomised controlled trial of motivational intervention, individual CBT and family intervention were assessed on multiple outcomes at 18-month follow-up. Carers were assessed on symptom, functioning and needs over 12 months. Health economy data were collected over 18 months. RESULTS: There were significant improvements in patient functioning compared with routine care over 18 months. No significant differences between treatment groups were found in carer or cost outcomes. CONCLUSIONS: The treatment programme was superior to routine care on outcomes relating to illness and service use, and the cost was comparable to the control treatment.
Introduction: The study 'Mental healthcare provision for adults with intellectual disability and a mental disorder' (MEMENTA) is a cross-sectional epidemiological study carried out in three different regions of Germany. Its main aim is to assess the prevalence of mental disorders in adults with intellectual disability (ID) as well as quality of mental healthcare for this population.
Methods and analysis: The target population are persons aged between 18 and 65 years with a mild or moderate ID. The study population will be recruited through service providers. A representative sample is realised by two-stage sampling. First, institutions providing services for people with ID (sheltered workshops) are selected in a stratified cluster sampling, with strata being (1) types of service-providing non-governmental organisations and (2) sizes of their sheltered workshops. Then persons working in selected sheltered workshops are selected by simple random sampling. An estimated number of 600 adults with ID will be included. Information will be obtained from the group leaders in the sheltered workshops, informal carers or staff members in sheltered housing institutions and the person with ID. Besides the main outcome parameter of psychiatric symptomatology and problem behaviour, other outcome parameters such as needs for care, quality of life, caregiver burden, health services utilisation and costs for care are assessed using well-established standardised instruments. If a comorbid mental disorder is diagnosed, quality of mental healthcare will be assessed with open questions to all interview partners and, in addition, problem-focused interviews with a small subgroup. Analyses will be carried out using quantitative and qualitative methods.
Ethics and dissemination Approval of all three local ethics committees was obtained. Research findings will add much needed empirical information in order to improve services provided to this vulnerable group of patients.
Background Needs for care in service users with schizophrenia are often defined by professionals and focus on basic needs for health and social care rather than broader existential issues.
Aims To examine the perceptions of users and formal and informal carers of the needs of people with non-affective psychosis.
Method A qualitative study was conducted involving focus groups of service users and informal and formal carers in a major Brazilian city.
Results Existential needs were the most important theme for people with psychotic disorders. Informal and formal carers mainly regarded such needs as secondary to needs for health, housing, leisure and work. Carers usually reduced the existential questioning of the ill person to symptoms or the result of a privation such as lack or failure of medication and its consequences.
Conclusions We require an approach to service users wherein respect and understanding are prized as the first needs from which all others will naturally follow. We also need to give greater priority to existential issues in validated schedules that measure needs in clinical work and research.
The aim was to develop an evidence-based model that focuses specifically on factors that enable the provision of personalized care to facilitate and promote the implementation of community-based personalized dementia care interventions. The model is based on our previous research and additional literature.
The theoretical model of adaptive implementation was used as a framework to structure our model. Facilitators and barriers considered relevant for personalized care were extracted from our studies and additional literature, and were synthesized into the new evidence-based implementation model and checklist for personalized dementia care in the community.
Extraction of data led to a composition of an evidence-based model for the implementation of personalized psychosocial care interventions that incorporates core components of personalized care. The model addresses several issues, e.g. how personalized care interventions should be offered and to whom; whether these are able to adapt to personal characteristics and needs of clients and informal caregivers; and whether both organizational management and staff that provide the intervention support personalized care and are able to focus on providing individualized care.
Our model provides a checklist for researchers, professional caregivers, and policy-makers who wish to develop, evaluate, or implement personalized care interventions.
There is an increasing international policy direction to promote home death for dying patients which will impact on the demands placed on family carers. The early identification of carer needs and appropriate intervention can help avoid crisis situations for the carer and avoidable hospital admissions which are reported to be a global concern. The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff.
Methods: A mixed-method, multi-phased, consensus study sequentially utilising qualitative and quantitative data to develop and pilot the Carers’ Alert Thermometer (CAT). 245 people (117 carers and 128 professionals) participated in the study across a range of health and social care settings in the North West of England (2011–2014).
Results: A number of key domains were identified and prioritised by consensus for inclusion in the CAT. The 8 domains fit within two overarching themes of the reported carer experience; the support needed by the carer to provide care and the support needed for the carer’s own health and well-being. The resultant CAT is an evidence-based alert thermometer consisting of 10 questions, guidance on the possible actions for each alert and space for an action plan to be jointly agreed by the assessor and carer. Preliminary piloting of the CAT has shown it to be valued, fit for purpose and it can be administered by a range of personnel.
Conclusions:The CAT enables the identification of current and potential future needs so a proactive approach can be taken to supporting the carer as their role develops over time, with a view to enhancing their well-being and preventing avoidable hospital admissions; ultimately supporting patient choice to remain in their own home.
There are many different organisations working with and supporting carers. This guide can be used by a wide range of professionals in different ways. Whilst the case studies provide examples of the partnership work promoted by Carers Centres, the methodologies given can be used in other partnership work across carers’ services, as well as within health and social work services.
This article examines whether providing informal eldercare to an older dependent person predicts employees' intentions to change jobs or exit the labor market and, if so, which particular aspects of both caregiving (e.g. time demands, physical/cognitive care burden) and their current work environment shape these intentions. We used data from a sample of 471 caring and 431 noncaring employees in Austria and split the analyses by gender. We found different aspects of informal caregiving to be associated with the intention to change jobs and with the anticipated labor market withdrawal of male and female workers. A time-based conflict between informal eldercare and paid work was significantly and positively related to the intended job change of female workers but not of their male counterparts. Flexible work arrangements were found to facilitate the attachment of female workers to their jobs and the labor market. Intentions to exit the labor market of male workers appeared to be triggered by a physical care burden rather than time demands. Copyright © 2012 John Wiley & Sons, Ltd.
Young carers are children and young people who look after a family member with illness, disability or mental health or substance misuse problems. Often the relative is not getting the support needed from statutory services. Of an estimated 175,000 young carers, 13,000, including 3,500 at primary school, provide more than 50 hours a week. Asks why they are hidden and discusses the failing education and adults’ services. Most adult carers, let alone young carers, are unaware of their rights. A handful of local authorities have a child-friendly carers assessment tool, but most professionals are unclear who should assess young carers and under what legislation.
This briefing presents the findings of a survey that sought to find out more about how different local authorities collect and use information about their local carer populations: the range of information sources they use to form an evidence base on carers; how they use evidence to understand local need; and how evidence influences their planning and delivery of local carer support. The key findings include: 95% of local authorities reported that they have information gaps around their local carer population and their needs; less than one in ten local authorities (7%) feel very confident that they understand the needs of their local carer population, while only 12% feel very confident that they know how best to support local carers; only half of local authorities think carers are well or fairly well represented in their JSNA, with less than 1 in 5 saying they are well represented; and some local authorities find it a challenge to collect the full range of equalities information for carers.
The survey results demonstrate that there are significant information gaps for local authorities seeking to use evidence to evaluate and improve local support for carers. Carers UK is working to fill these gaps.
Part 2 of a video by Viviana Fain-Binda for carers of people with dementia. In the video carers of people with dementia talk about the importance of finding out about and accessing services available. It also stresses the benefits of joining local support groups to find out information and provide support.
The Essence of Care benchmarks are a tool to help healthcare practitioners take a patient-focused and structured approach to sharing and comparing practice. There are 12 benchmarks in total. This document provides the benchmarks for safety, so that people, their carers, visitors and staff feel safe, secure and supported. It starts by considering the general indicators that apply to every factor: people’s experience; diversity and individual needs; effectiveness; consent and confidentiality; people, carer and community members’ participation; leadership; education and training; documentation; service delivery; safety; and safeguarding. It then considers the factors specific to safety, together with their supporting indicators. The factors are: orientation; assessment – risk of injury; assessment – risk to others; observation and privacy; planning, implementation, evaluation and revision of care; and positive culture.
In Belgium, and in other OECD countries, there is a growing awareness about the importance of informal home care for the elderly's well-being. Informal care is considered as an intrinsically valuable social phenomenon. Public authorities in Belgium have been advocating an active policy of support for informal carers. In 2007, an extensive survey was carried out in the Belgian municipality of Kruibeke in order to establish a better picture of the various needs of the elderly in their home situation, but also to better understand the way in which informal care is provided and perceived by care receivers and care givers. The study points to the need for support for the difficult burden of informal care and highlights the need for a coordinated and integrated approach to elderly care.
This study uses focus groups of users, carers, and structured staff interviews to explore the physical health needs of mental health services users and the barriers that make it hard for them to seek or gain access to services. Results found that despite the inextricable link between physical well-being and mental health, professionals in both primary and secondary care fail to view users holistically. Professional role ambiguity and poor communications result in access difficulties for users and add to the burden felt by carers. A focus on reactive interventions to ill-health rather than on health promotion and physical well-being took place in context of paternalism, strict, adherence to the medical paradigm and failure to take users' physical health concerns seriously. Implementation of the National Service Framework (NSF) standards are discussed in the light of these findings.
This paper presents a brief review of literature relating to children in families with a disabled member, including the 'young carers' and disability studies literature, and relevant works from the social psychology and sociology of childhood. Key themes identified in the literature are then illustrated by findings from two exploratory research studies that sought to explore the experiences and service needs of children in families with a disabled member, within two Scottish areas. The authors suggest that, although young people affected by disability in the family, including young carers, face significant problems, particularly in socially disadvantaged areas, there are other issues that need to be addressed. Alternative conceptual frameworks are proposed, which challenge the dominance of the young carers research paradigm.
Mencap finds no let up in stress for carers of people with learning disabilities as councils fail to assess their needs and make inadequate provision of short breaks. [Journal abstract]
Background: Patients with life-limiting illnesses are dependent on their families and healthcare providers for care. In Malaysia, there is a lack of data exploring the experiences and needs of patients and carers. It is not known whether these needs are being identified accurately by the palliative care providers.
Aim: The aim of this study was to explore the experiences and needs of patients with life-limiting illnesses receiving community palliative care and the experiences of their formal and informal carers when providing care for the patients.
Design: A qualitative study involving individual semi-structured in-depth interviews and focus groups. The interviews and focus group discussion were audio-recorded, transcribed verbatim, and the transcripts and fields notes were used as data for thematic analysis.
Setting/participants: The participants were patients, carers, and healthcare professionals from Hospis Malaysia, an urban community palliative care service in Malaysia.
Results: Four main themes emerged: the lack of choice; emotional impact of illness; needs of patients and carers; and the role of spirituality in coping with the illness. The healthcare professionals’ perceptions of patients’ and carers’ needs agreed with the findings from patients and carers. Carers expressed emotional distress and the need for more information and practical advice. Heavy workload was identified as a barrier for the nurses to providing more comprehensive care, including carer support.
Conclusions: This study highlighted the differences between perceived and actual needs of patients and carers. Therefore, it is important for healthcare providers to engage patients and carers in decision making, to identify and address their information and emotional needs.
Purpose: The authors identified the need for a cross-disciplinary research view of issues to ensure an integrated citizen-centric support to achieve optimal health of individual citizens and, in particular, the role of informatics to inform and coordinate support towards integrated and holistic care.
Method: An Exploratory Workshop was approved and sponsored by the European Science Foundation. Twenty-three participants from 15 countries attended, covering a full range of health, social care and informatics professions and disciplines.
Results: The participants found strong common ground in identifying key issues to be addressed if citizens with compromised health are to receive integrated and coordinated support to a common set of objectives, while also ensuring appropriate choice and support for citizen, family and other informal carers. At the same time, optimal health was identified as a fundamental human right, and that achieving this is a necessary priority of a caring society. Moreover, Europe has a commitment to researching and developing health informatics (e-health), though not yet giving a priority to this integration of health and social care. Specifically the following main informatics challenges to be addressed were identified: (1) to identify available information and communication needs related to different scenarios of use in the intersection between health and social care, (2) to develop and map shared ontologies, and standards for integration and/or brokerage, (3) to enable planned information access and sharing, shaping a system of trust where the patient is an active partner and policies are established considering all partners/interests, (4) to investigate the use of automatic/intelligent knowledge based and context-relevant services, and (5) empowering the citizen (or their selected agent) as co-producer through modern informatics tools, while carefully avoiding selective disempowerment of the most vulnerable.
Conclusion: The Exploratory Workshop resulted in a unanimous Declaration for action, which is presented appended to this paper.
Sets out the role and responsibilities for nurses providing care and support for people with dementia. It updates an earlier strategy published in 2013, and aims to support all nurses to be responsive to the needs of people with dementia, continue to develop their skills and expertise, and achieve the best outcomes for people with dementia, their carers and families. It looks at how nurses can use the Dementia Core Skills Education and Training Framework and outline’s their role within all phases of dementia and area of nursing practice. Links to relevant guidance and resources are included.
Place of death is at times suggested as an outcome for palliative care services. This study aimed to describe longitudinal preferences for place of care and place of death over time for patients and their caregivers. Longitudinal paired data of patient/caregiver dyads from a prospective unblinded cluster randomised control trial were used. Patients and caregivers were separately asked by the palliative care nurse their preference at that time for place of care and place of death. Longitudinal changes over time for both questions were mapped; patterns of agreement (patient and caregiver; and preference for place of death when last asked and actual placed of death) were analysed with kappa statistics. Seventy-one patient/caregiver dyads were analysed. In longitudinal preferences, preferences for both the place of care (asked a mean of >6 times) and place of death (asked a mean of >4 times) changed for patients (28% and 30% respectively) and caregivers (31% and 30%, respectively). In agreement between patients and caregivers, agreement between preference of place of care and preferred place of death when asked contemporaneously for patients and caregivers was low [56% (κ 0.33) and 36% (κ 0.35) respectively]. In preference versus actual place of death, preferences were met for 37.5% of participants for home death; 62.5% for hospital; 76.9% for hospice and 63.6% for aged care facility. This study suggests that there are two conversations: preference for current place of care and preference for care at the time of death. Place of care is not a euphemism for place of death; and further research is needed to delineate these. Patient and caregiver preferences may not change simultaneously. Implications of any mismatch between actual events and preferences need to be explored.
The contribution made by informal carers to the provision of care in the community in the UK is formally acknowledged in the 1995 Carers (Recognition and Services) Act. This legislation has focussed attention, once again, on the relationship between formal services and those providing informal care. The Act has re-created a lack of clarity about the position carers hold in the carer dyad. Findings are presented here from an exploratory study about the experience of dementia. This seeks to examine the realities of caring for a relative with dementia in the context of three particular aspects of the caring activities which relate to role ambiguity: the needs of carers, their relationship with formal services and their position as being experienced and skilled in the care of their relatives.
Reports on the development of a joint mental health strategy for older people in a central London Borough. The project brought together clinicians and practitioners from a variety of settings, the voluntary sector, and users and carers. The aim of the project was to develop a shared philosophy of care based on promoting independence and from this to identify the components of a spectrum of care that would meet the wide range of needs of elders with mental ill health. The borough had high levels of deprivation, unemployment and poor housing. In addition there was a rich ethnic diversity within the borough.
Background The aim of this study was to explore the views of hospital and disability service staff on the roles and needs of family carers of adults with cerebral palsy (CP) and complex communication needs (CCN) in hospital.
Method We conducted a focus group with six hospital and disability service staff, analysed the content themes of the group discussion, and verified the analysis with participants.
Results Participants highlighted the family carers’ expertise and roles in emotional and communication support, advocacy, and providing information. They acknowledged that there is a gap between the ideal of hospital staff being able to provide all necessary care to the patient with CP, and the reality of hospital staff relying upon family carers for their expertise and provision of patient care.
Conclusions Hospital and disability staff do not expect family carers to replace the nurse in caring for the patient with CP and CCN in hospital. Nevertheless, family carers provide valuable support in hospital. This includes support with communication, advocacy, protection, information exchange, direct care, and emotional support. Family carers with a high level of expertise in providing care may need support in adapting to the culture of care on the ward and in transferring their roles and expertise in direct care to hospital staff. In addition, they need emotional and practical support through the stressful experience of having a family member hospitalised.
Care workers are introduced to the concepts of access and application of policies and procedures, the organisation’s aims & values and working in partnership with other workers and the service user. It also considers the responsibilities a care worker has, as set out in the General Social Care Council’s Code of Practice for Social Care Workers. This video will help them answer such questions as: What standard of conduct is expected of me? What tasks and activities will I be expected to carry out? Where do I go for advice, information and support? Why should I support the involvement of carers and family? This title, contributes to improving understanding of the various interrelating issues that combine to ensure the role of the care worker is central to promoting good principles of care that meet the individual needs of service users.
Background: Informal carers play an important role in supporting people with long-term conditions living at home. However, the caring role is known to have adverse effects on carers such as poorer emotional health and social isolation. A variety of types of respite may be offered to carers but little is known about the benefits of respite, carers’ experiences with it, or their perceptions of care workers. This study therefore investigated these experiences and perceptions.
Method: Recorded, semi-structured interviews were undertaken with twelve carers receiving weekly four-hourly respite. Carers were either caring for a person over sixty or were over sixty themselves. Interviews were analysed thematically.
Results and Discussion: Respite sometimes alleviated carers’ constant sense of responsibility for their cared for. Trust, whether in the service provider or individual care workers, was essential. Carers lacking this trust tended to perceive respite as less beneficial. Low expectations were common with carers often unwilling to find fault. Care workers were frequently seen as very kind with some carers valuing their company. Care workers who were flexible, communicated well and responded to the cared for’s needs were valued. Stimulation of the cared for during respite was very important to most carers but the perceived benefits for carers were often very individual. Many carers used respite to catch up with routine, domestic tasks, rarely using it to socialise.
Conclusions: For many carers, respite was a way of maintaining normality in often difficult, restricted lives. Respite allowed continuation of what most people take for granted. Carers frequently viewed respite as intended to improve their cared for’s quality of life, rather than their own. This centrality of the cared for means that carers can only really benefit from respite if the cared for is happy and also seen to benefit. Future research should investigate the perspectives of carers and their cared for, focussing on different demographic groups by features such as age, gender, ethnicity and diagnostic groups. However, without greater clarity about what respite is intended to achieve, clear evidence of a positive impact of this intervention may remain difficult to identify.
Examined were the impact of exercise barriers and carer attitudes regarding exercise outcomes on the exercise participation of adults with Down syndrome (DS). The sample included 44 adults age 30 years and older with DS and mild to moderate intellectual disability and their carers (family members or staff). Measures included personal characteristics of the adults with DS (age, level of adaptive behavior, and health status), carer perceived outcomes of exercise for people with DS, socio-emotional barriers, and access barriers to exercising. A regression analysis was conducted with exercise frequency as the dependent variable and the above measures as the independent variables. The significant determinants of exercise participation were carers' perceived outcomes of exercise for persons with DS and access barriers. When carers perceived greater benefits of exercise and when there were fewer access barriers, the adults with DS were likely to exercise more frequently. Persons with DS were more likely to report access barriers than were informants. The results reinforce the need to improve access to exercise facilities and equipment and to increase carers' awareness of the importance of exercise for adults with DS.
More than 5 million informal carers provide support to individuals who wish to remain within their own homes. The role of informal carers in maintaining people within their own homes has been identified as crucial. This article considers the assessment of need of informal carers in the primary care setting, placing particular emphasis on the role of the district nurse as an advocate for informal carers when working with other health and social care service providers. Central to working with informal carers and acting as an advocate is communication, and unless informal carers feel that they are involved in the decision-making process, and listened to, they are unlikely to access appropriate support.
This e-learning training module aims to support re-orientation and re-skilling of staff directly involved in decision-making using Fair access to care services (FACS) and eligibility criteria, their supervisors and line managers, and those monitoring and reporting on the operations of the system. Sections cover the implications for practice of the revised FACS guidance; what FACS says about assessment, support planning, reviews and transitions; supporting carers; and the financial implications of FACS 2010, including resource allocation systems, personal budgets, and self-funding and charging. The module also includes a series of cases to test your assessment skills. [NB As of April 1 2015, this course has been de-listed and is no longer available. Fair access to care has now been wholly replaced by new practice and guidance described in the Care Act 2014].
Presents an overview of seven pieces of research into the needs of older people. Includes technological support, meal choices for people with dementia, and a study of the Carers' Act.
Aim. To examine the changing needs of Chinese family caregivers before and after stroke survivors’ discharge from hospital.
Background. Stroke ranks third as the most common cause of death in Hong Kong and is the leading cause of adult disability. Community care has been adopted as the major source of care for older people in Hong Kong and this has impacted on family caregivers.
Design and methods. This is a descriptive-correlational design using a within-subjects design. The needs of 40 Chinese family caregivers who met the inclusion criteria were assessed before discharge and two weeks later using the Carer Assessment Scale, Cost of Care Index and one open-ended question. Modified Barthel Index measured the functional ability of stroke survivors.
Results. Family caregivers are able to anticipate most of their needs and to make provision to meet the basic practical needs before discharge. Although needs changed after discharge the four most important needs persisted. These were associated with emotional and psychological problems and financial difficulties. Discharge destinations made no difference to the total scores obtained using the above scales.
Conclusions. This study provides information about need at a time of transition in an under-researched population of Chinese caregivers. Assessment of need is important with Chinese family carers in order to identify focused interventions in a population, i.e. reluctant to make their needs known to professional services. More research about caregiving problems for Chinese family caregivers at the transition from hospital to community is required.
Relevance to clinical practice. Ongoing need assessment by nurses who are in regular contact with caregivers in hospital and community will enable appropriate interventions such as providing education and emotional support both before and after discharge to be offered to Chinese communities.
Young adult carers experience significant disadvantage as a result of their caring responsibilities--not least in education. While there is some creative and flexible provision out there, the author stresses that too often providers fail to take account of the specific needs and responsibilities of young carers. The author presents the comments made by young adult carers who participated in focus groups and interviews as part of recent NIACE research, "Access to Education and Training for Young Adult Carers," funded by the Nuffield Foundation. They give an indication of the day-to-day difficulties faced by these young people. NIACE's research identified a range of factors that can have a positive impact upon young adult carers' engagement in learning and improve their wellbeing, these include: (1) flexible provision; (2) relaxed provision; (3) sensitive arrangements; (4) emotional support; (5) Holistic support; and (6) effective multi-agency working. Building on the findings of this research, NIACE has recently secured funding from the Department of Health's Third Sector Investment Programme for a project called "Who Cares? Promoting Family Focused Learning Opportunities for Young Adult Carers." This project will support practitioners who work with young adult carers to develop learning opportunities that are family-focused and responsive to their needs.
Although the potential of using location information to support people with dementia has been recognised, the uptake of location technology in this area has been limited compared with the uptake of standard Telecare techniques. The paper examines the reasons for this and describes a project, EASE (Extended Active Support Environment) which was commissioned by NHS South as part of their SBRI for Dementia programme, to develop a system which would address these issues and make location technologies a practical tool to support people with more advanced dementia.
We conducted a mixed-methods knowledge synthesis to assess the effectiveness of interventions to improve caregivers' involvement in decision making with seniors, and to describe caregivers' experiences of decision making in the absence of interventions. We analyzed forty-nine qualitative, fourteen quantitative, and three mixed-methods studies. The qualitative studies indicated that caregivers had unmet needs for information, discussions of values and needs, and decision support, which led to negative sentiments after decision making. Our results indicate that there have been insufficient quantitative evaluations of interventions to involve caregivers in decision making with seniors and that the evaluations that do exist found few clinically significant effects. Elements of usual care that received positive evaluations were the availability of a decision coach and a supportive decision-making environment. Additional rigorously evaluated interventions are needed to help caregivers be more involved in decision making with seniors.
AIMS AND OBJECTIVES: To explore and understand the experience of new informal caregivers in Italy during the transition from hospital to home.
BACKGROUND: Frequent patient discharge into the home environment has lead to a significant increase in postdischarge care being provided by family caregivers. The transition period in particular is seen as a period of great significance, as caregivers may be unprepared and concerned as to the amount of care required by the recipient.
DESIGN: A qualitative phenomenological approach was used to gain a deeper understanding of caregivers' lived experiences.
METHODS: Data were collected at two points in time using different methodologies: in-depth interviews were conducted to explore the caregivers' perspective of the predischarge period; focus groups obtained data after the patients' re-entry into the home environment and aimed to validate interview findings.
RESULTS: Family caregivers reflected on three main themes during the transition period: (1) their newly acquired role; (2) the recipient's condition; and (3) the support they required. The core concept of 'being responsible for everything' seemed to be a recurring theme running through these three subject matters. Fulfilling numerous commitments and different social roles besides the caring activity itself seemed to weigh heavily on caregivers. Carers were referring particularly to their need for hope, confidence and safety during the transition from hospital to home.
CONCLUSIONS: It cannot be assumed a priori that families can cope with the demands of care-giving. Therefore, healthcare professionals should come to recognise caregivers as persons in need of emotional and practical support.
RELEVANCE TO CLINICAL PRACTICE: The findings of this study can stimulate healthcare professionals to acquire effective communication skills and display an empathic attitude when assessing caregivers' needs in the particularly challenging phase of transition from hospital to home.
Background and aims: A body of literature indicates that the informal carers (e.g. family, friends) of people with social and health care needs experience poorer quality of life, health and psychological wellbeing than their non-carer counterparts (e.g. Pinquart & Sorensen, 2003). It has been suggested that telecare interventions to enable a person with social care needs to remain at home may also positively impact on informal carer wellbeing (Yeandle, 2009), however, little is known about their effect in this domain. This review aimed to document and evaluates the evidence for the effect of telecare for a person with social care needs on psychological outcomes for their informal carer. Method: A systematic review method was employed: six electronic databases were searched and experts in the field contacted to identify relevant published and unpublished evaluations. Seven hundred and forty-four unique studies were identified and assessed by two researchers for their fulfilment of the study inclusion criteria. Their quality was assessed using a standardised tool, and data extracted to describe the studies’ characteristics and findings. Results and conclusions: Seven evaluations fulfilled the inclusion criteria, of which two originated from peer-reviewed publications. Outcomes measured included carer burden, stress, satisfaction with telecare kit, worker productivity and morale, and relationships with the cared for person and others. All included studies suffered from methodological weaknesses, including non-randomised designs, small sample sizes and non-validated measures. The data indicated inconsistent evidence for an effect of telecare on informal carers’ psychological wellbeing and perceptions of telecare kit, although there is tentative evidence to suggest a positive effect of telecare on carer stress and satisfaction with kit. Implications of the findings for future research and practice will be discussed
This Guidance has been prepared by the Department of Health, Social Services and Public Safety in order to assist in understanding the Carer’s and Direct payments Act 2002 and the policy behind it. The Act places new responsibilities on “an authority”. This term is defined in the Act as meaning either an HSS Board or an HSS Trust, though in practice it will mean an HSS Trust in virtually all cases. This guidance, therefore, refers throughout to assessments and services being provided by HSS Trusts. The Act was introduced into the N.I. Assembly as the Personal Social Services (Amendment) Bill. Following Consideration Stage the Assembly agreed that it should be henceforth referred to as the Carers and Direct Payments Act.
The Carers and Direct Payments Act (Northern Ireland) 2002 was implemented in two stages. It repeals the Personal Social Services (Direct Payments) (NI) Order 1996. The first stage which came into force in March 2003 made three main provisions. The Act allows Health and Social Services Trusts to provide personal social services to support carers directly. It gives them the right to an assessment of their own needs. Thirdly, Trusts are required to inform people of their legal right to a care assessment. The second stage of the Act, implemented in April 2004, widened the availability of Direct Payments. Since its implementation, Trusts have had the power to make Direct Payments available to more people. The original legislation made Direct Payments available to disabled people over the age of 18 who were eligible for Social Services and deemed by the Trust as being willing and able to manage Direct Payments with as much assistance as necessary.
Intergenerational solidarity within families is the traditional source of support for dependent elderly people in southern European countries, where care needs have been mainly fulfilled by the unpaid work of women. Recently, the decline of informal care and the persistent lack of supply of formal services have been accompanied by the growth of commercial services mostly provided by migrant women hired by families in the grey market. The article is based on a qualitative study and explores the social processes underlying these changes. It suggests that although intergenerational solidarity is still crucial, it is expressed less through the direct provision of care and more through the supervision of paid services. This shift, which results mainly from a strategy adopted by middle-class women, challenges traditional gender relations and divisions of work. Moreover, it produces employment relations characterized by low pay and underprotection and reflecting conflicts over time and space typically present in informal care relations.
The use of respite services by carers has been shown to extend the length of time people with dementia can remain living in the community with family support. However, the use of respite services by informal carers of people with dementia is often low and does not appear to match carer need. To better understand how to address carers' unmet need for respite, the factors that impede respite service use must be identified. To achieve this, a narrative synthesis of published academic literature (1990–2011) was undertaken regarding factors associated with not utilising different types of respite services utilising Anderson's Behavioural Model of Service Use. The review reinforces the importance of the assessment and matching of services to the needs of individual carers and care recipients at the local level. It also highlights the need to move beyond care pathways for individuals. To support respite use there is a need for local action to be augmented at a community or population level by strategies to address attitudinal and resource barriers that influence sub-groups of the carer population who may be more vulnerable to service non-use.
Everyone is entitled to well-being and everyone has a responsibility for their own well-being, but some people need extra help to achieve this. To define what well-being means to the individual, and understand whether this is being achieved, the Welsh Government has published a well-being statement. The statement describes aspects of well-being that relate to all areas of an individual’s life in respect of needing care and support, and also carers who need support. It will be used to build a common understanding of well-being across all agencies in Wales.
Original document (pdf) on the Welsh Government website.
This paper is concerned with improving assessment practices with people who are carers of people with mental illness. It is established that the well-being of carers is negatively impacted by the burden of their caring role, and that the needs of carers are often overlooked and poorly responded to by formal helping services. It is the purpose here to report on findings from the data provided by a subset of participants from a broader collaborative research project that developed and trialled a carer’s assessment tool. The goal was to establish whether the tool was useful in practice for the purposes of assessment. This paper outlines key principles for practitioners and services to consider in their assessment practices with carers. These include an assessment process that allows carers to focus on their own feelings independent of the person they may be caring for; the importance of developing a feeling of solidarity with other carers while validating their caring experience; a comprehensive and holistic assessment process; and, opportunities to prioritise in a collaborative manner what might be an overwhelming number of areas of need or concern.
Access to regular, high-quality respite care has a beneficial impact on a carer’s ability to fulfil their caring role, but provision varies widely. The current study aims to report family and informal carers’ perceptions of respite care services offered to them by their local authority. A mixed method, triangulated design, yielded both quantitative and qualitative data. Members of a parent/carer federation were sent a questionnaire which included a section on ‘respite care’; 151 of 647 responded. Two focus groups were held with 15 carers who had previously completed the questionnaire. The majority of carers reported that their respite needs were not being met. Unmet needs were hampered by the lack of information regarding criteria for access to respite. Discrepancies were evident between professionals and carers on a shared definition of respite care. Carers were unsure of exactly which activities constituted respite care and for whom the service was being provided.
Background: This paper describes both the use of and needs for informal caregivers of people with dementia, based on a questionnaire survey organized within the National Dementia Programme in the Netherlands. The National Dementia Programme is a quality collaborative of the Dutch Alzheimer's Association, the Institute of Quality of Healthcare (CBO) and the Knowledge Centre on Ageing (Vilans), instigated by the Ministry of Health, Welfare and Sport, to improve integrated care for people with dementia and their informal caregivers. The support needs of informal caregivers are important to improve caregiver well-being and delaying institutionalization of the person with dementia.
Methods: In the period April 2006 - January 2007, the National Dementia Programme questionnaire was completed by 984 informal caregivers. Descriptive statistics were used to analyze the use of and needs for additional professional support by informal caregivers. Chi-square tests were used to assess the relationships between characteristics of the caregivers (spouses, sons/daughters, sons/daughters in-law) and support needs on one hand and to assess the relationship between the living situation of the person with dementia (living at home or living in a nursing home or home for the elderly) and support needs on the other hand.
Results: Almost all informal caregivers (92.6%) received some professional support. However, two thirds (67.4%) indicated they had one or more needs for additional professional support. Informal caregivers often need additional professional advice about what to do when their relative is frightened, angry of confused. Spouses reported different needs than sons or daughters (in-law): spouses relatively often need emotional support and sons or daughters (in-law) more often need information and coordination of dementia care.
Conclusions: Most of the informal caregivers report that they need additional information and advice, e.g. about how to cope with behavioral problems of their relative, about the progression of the illness trajectory, emotional support and coordination of dementia care. Future support programmes, e.g. in the field of case management, should address the specific needs of informal caregivers.
As more people are living longer this growing number of older people means an increase in mental health problems. Twenty-five per cent of people over 85 develop dementia and between ten and sixteen per cent of those over 65 develop clinical depression. In addition, people who developed severe and enduring mental health problems such as schizophrenia when young are now growing older (Audit Commission, 2000). Most people with dementia live in the community. About half are cared for at home by a family carer, usually a spouse or adult child (Keady & Nolan, 1995). The average age of carers is between 60 and 65 years and many are much older (Levin, 1997). Carers of people with dementia are likely to have higher than normal levels of stress and burden and report higher levels of depression (Pearson et al, 1993; Russo et al, 1995). 34 refs. [Introduction]
Background: NHS Direct is a new service that offers 24-hour advice from trained nurses. The National Service Framework for Mental Health and the National Strategy for Carers both mention NHS Direct as an important source of support for people with mental health problems. Aims: This paper reports findings from an evaluation of the Department of Health's NHS Direct mental health initiative. This initiative was established to ensure that NHS Direct can meet the needs of callers with mental health problems by offering additional training to all staff and improving the database of mental health services. Method: The findings reported here are based on routine computer data provided by 12 out of 17 NHS Direct sites, 552 data forms completed by nurse advisers from the 17 sites, and 111 questionnaires administered over the telephone with callers to the 17 sites. Results: Mental health calls accounted for 3% of NHS Direct's workload, although these calls were often longer and more complex than other calls. The majority of callers to the service were in touch with other services for their mental health problems (59%), typically their GP. Most callers had 'moderate' mental health problems, as indicated by the Global Assessment of Functioning Scale. Generally callers were satisfied with the service they received, although satisfaction was lower in some areas than previous studies of NHS Direct. Conclusions: Improvements could be made in the mechanisms for referring callers on to other services, and training to increase nurse advisers' knowledge of mental health problems.
The concept of care has attracted considerable interest and there has been growing attention both to the needs of carers and how they may sometimes conflict with those of service users. Draws on initial research findings to examine experiences of care in mental health for men and women and for carers and users.
Purpose. Little is known about how spouses cope with their needs as a result of their partner's aphasia. This study described spouses' needs and identified the barriers and facilitators to satisfying them.
Methods. Four associations of people with aphasia were approached. Eleven spouses were interviewed in small groups. They described the results of their inquiries and efforts to satisfy their needs because their partner had aphasia (mean time since onset 6 years 8 months) as a result of stroke or surgery. Discussions were transcribed and coded. Excerpts were grouped into categories.
Results. Spouses mainly needed support and respite, and perceived their partner to need help for communication and well-being. Personal factors like the availability of close others to provide help were facilitating. However, participants encountered barriers, mainly organisational, i.e. the help needed did not exist. Some needs persisted over time.
Conclusions. Results confirm the long-term needs of spouses in adjusting to the aphasia of their partner, as well as the limited services available to them. Many of the needs reflected spouses' concerns about their partner, while others were a consequence of their caregiving role as well as the unavailability of support. Spouses of people with aphasia should have access to support during and after rehabilitation.
Discusses the "Young Carers in the UK: The 2004 Report" which focuses on the third national survey of young carers in Great Britain. Data collection for the survey; Information on people with care needs; Range of caring tasks young people perform; Percentage of young carers providing different tasks; Impact of caring tasks on educational experiences of carers; Percentage of young carers assessed under the Children Act.
Aims: The aims of this analysis were to examine levels of unmet needs and depression among carers of people newly diagnosed with cancer and to identify groups who may be at higher risk, by examining relationships with demographic characteristics.
Methods: One hundred and fifty dyads of people newly diagnosed with cancer and their carers, aged 18 years and older, were recruited from four Australian hospitals. People with cancer receiving adjuvant cancer treatment with curative intent, were eligible to participate. Carers completed the Supportive Care Needs Survey-Partners & Caregivers (SCNS-P&C45), and both carers and patients completed the Centre of Epidemiologic-Depression Scale (CES-D).
Results: Overall, 57% of carers reported at least one, 37% at least three, 31% at least five, and 15% at least 10 unmet needs; the most commonly endorsed unmet needs were in the domains of information and health care service needs. Thirty percent of carers and 36% of patients were at risk of clinical depression. A weak to moderate positive relationship was observed between unmet needs and carer depression (r = 0.30, p < 0.001). Carer levels of unmet needs were significantly associated with carer age, hospital type, treatment type, cancer type, living situation, relationship status (in both uni- and multi-factor analysis); person with cancer age and carer level of education (in unifactor analysis only); but not with carer gender or patient gender (in both uni- and multi-factor analyses).
Conclusion: Findings highlight the importance of developing tailored programmes to systematically assist carers who are supporting patients through the early stages of cancer treatment.
Many individuals provide care for people who would otherwise require core from health professionals. The need for 'informal carers' to support health services is likely to increase due to changing socio-demographic trends. However, little is known about the nature and extent of informal core and the needs of carers and those receiving care. The objectives of the study were to assess the psychosocial impact of coring and being cared for, determine the extent of care giving and assess needs and current levels of support.A representative sample of 531 households across Galway, Mayo and Roscommon was selected. Interviewers administered up to three surveys, depending on household composition (carers, those receiving care, non-carers). Eighteen per cent of the population were defined as corers. This equates to more than 19,000 corers throughout the region. The majority of those receiving care were older people. Many carers devoted all their time to their caring role and were on-call 24 hours a day to help the person [...]
Caring for people with mental health problems can generate a whole range of positive and negative emotions, including fear, disbelief, guilt and chaos as well as a sense of purpose, pride and achievement. This paper explores the emotions of family carers from the perspectives of social, voluntary and healthcare professionals. Sixty-five participants were interviewed, the sample included directors, managers and senior staff from social, voluntary and healthcare organisations. Participants were encouraged to talk in detail about their understanding of the emotions of family carers. Findings highlight a rich understanding of the broad spectrum of carer emotions and the huge emotional adjustments that are often involved. Diagnosis was seen to be imbued with negative emotions, such as fear, anger and denial. However, feelings of hopelessness and desolation were often counterbalanced by feelings of hope, satisfaction and the emotional rewards of caring for a loved one. Participants noted a clear lack of emotional support for family carers, with accompanying feelings of marginalisation, particularly during transitions and especially involving young carers as well as ethnic minorities. By way of contrast, carer support groups were suggested by professionals to be a holistic, effective and economical way of meeting carers’ emotional needs. This paper explores the challenge of family carer emotions from the perspective of managers and practitioners and draws out implications for research, policy and practice.
There is not only a lack of research that conceptualises the information needs of informal carers but also a shortage in research that addresses those needs from the perspective of information systems in the health care system. This shortage of systematic and conceptualised research on information needs of informal carers often prohibits the information providers and developers from knowing what types of information informal carers need to support their roles and tasks as carers and to evaluate how well they are fulfilling the information needs of informal carers. Drawing upon the previous available research on information needs in general and information needs of informal carers in particular, this paper proposes a conceptual model of the information needs of informal carers. The conceptual model illustrates four abstraction groups of information needs of informal carers i.e. recognised demanded, unrecognised demanded, recognised undemanded, and unrecognised undemanded. The paper highlights the potential usefulness of the model.
Phillipa Hare offers some practical advice on how general practices can identify and record carers within their areas. 3 refs. [Introduction]
Policy rhetoric over recent decades has promoted social inclusion of the more vulnerable sectors of society, such as people with learning difficulties. This study aimed to describe the experiences of adults with learning difficulties in north-east England and their family and to appraise their care. Thirty-five people with a learning difficulty and/or a family member were interviewed. A model of social coherence was developed that moves beyond the self-limiting debates about social inclusion and exclusion. It is underpinned by a sense of location for the person with a disability in relation to services and carers, family and community, dependency and risk, temporality and space, events, control and society. Key recommendations are for services to know the individual and his/her family; to be responsive to individual needs; to enhance the capacity of families and communities to support people with difficulty in learning; and to help these people to feel more valued.
The overall aim of the A.C.T.I.O.N. research project (Assisting Carers using Telematic Interventions to meet Older person's Needs) is to maintain or enhance the autonomy, independence and quality of life of frail older and disabled people and their family carers by providing information, advice and support in the home. The authors report on the first phase of evaluation conducted using a case-study approach to test the A.C.T.I.O.N. system in several family carers' homes in Sheffield, England. The results reflect the realities of conducting an applied research technology project and are discussed with reference to the government's recent national strategy for carers. The authors acknowledge the need for further evaluation studies to explore the key issues raised within this preliminary evaluation phase.
The focus of this paper is the experiences and needs of family carers of people with end-stage dementia. The project involved in-depth, qualitative interviews with 15 carers. The major themes emerging from the accounts of participants' experiences were: getting support; having to trust others with care; managing the loneliness of being a carer; witnessing a loved one fade away; anticipating and experiencing death; and re-establishing life after the funeral. Carers expressed a range of instrumental and psychosocial needs. The study has provided a more personal account of the caring experience than much of the related literature. It has emphasised the need of carers for genuine understanding and connection - from family and friends as well as healthcare staff. The study highlights the amount of support carers can provide to each other through support groups and associated friendships, and stresses the importance of healthcare staff acknowledging and respecting this capacity of carers.
This briefing paper describes the views, experiences, motivations and plans of six older carers who decided to stay involved in research following their participation in a one year project at the University of Nottingham funded by Macmillan Cancer Support. The project was set up to study the experiences and main support needs of older carers looking after someone with advanced cancer and was designed to also encourage and facilitate the active involvement of carers in the research process (the support needs of older carers identified in the project are outlined in another briefing paper, ‘Improving support for older people looking after someone with advanced cancer’).
Community (district) nurses (CNs) are well positioned to provide follow-up home visits to bereaved families and carers of their recently deceased palliative clients. An Australian survey of CN's (n = 58, response rate 29%) described their experiences of bereavement support visits, perceptions of their role in bereavement care and their professional support needs. Although positive experiences were commonly reported, with 95% of participants considering bereavement follow-up visits as consistent with their role, 53% found the visits difficult for reasons such as the nurse or client not understanding the purpose, the CN‘s excessive personal identification with the client's situation, the emotional intensity of visits, and lack of confidence or skills despite prior training. The nature and quality of the CN‘s prior relationship with the bereaved family was an important determinant of the visits’ success. Results highlight the value of bereavement support visits, while identifying professional development needs. Managing emotionally intense episodes should receive priority in preparing CN's for this challenging role.
Caregivers of individuals with disabilities can experience stress as they manage care giving responsibilities while they attempt to balance family, work, and the satisfaction of their personal goals. In this pilot study, 31 caregivers of individuals with a variety of disabilities completed a quantitative-qualitative survey. A statistically significant relationship was found between the age and severity of disability of the family member receiving care, the length of time care had been provided, the educational level and the relationship of the caregiver to the family member and reported feelings of optimism, humbleness, quality of family relationships, financial concerns, loss of control, and hope. When life goals were probed, the most common reported were achieving financial stability, having a strong, healthy family, and experiencing happiness. The implications for supporting caregivers and their families are discussed. [Journal abstract]
Purpose – This article aims to explore the new challenge posed by the first generations of people with learning disabilities who are now living into older age in significant numbers. Most are living with family carers, who are themselves ageing. This represents a major transition in people's lives and one to which services must respond if a normal life event is not to be turned into a crisis. Though this issue has been acknowledged by government, much more needs to be done to provide people with learning disabilities and their families with the necessary support to enjoy a healthy and active old age.
Design/methodology/approach – This article draws on the work of the authors for over a decade in this field.
Findings – Learning disabled people are likely to experience the age discrimination common in much older people provision and practice and the caring relationship is undermined in the short and long term. Evidence on the extension of personalisation indicates that it presents very considerable challenges for this group of families.
Practical implications – More information is needed on this growing population. More preventative support is needed to sustain the caring relationship while the family is living together, to support families to plan for the future, and to provide support when the caring relationship breaks down.
Originality/value – The article draws together data from the fields of ageing, learning disability and family care to highlight the increasing challenge, which this growing, but neglected, population presents both for policy and practice. It examines the implications for both the older people themselves and for the ageing family carers with whom the majority live and of current government policy in social care and welfare benefits for this very vulnerable group.
Objectives: There has been a global push towards the earlier diagnosis of dementia, but there is little understanding of the transitions along the assessment and diagnostic pathway from the perspective of people affected by memory problems, cognitive impairment and early dementia. This study explores the experience of the assessment and diagnostic pathway for people with cognitive impairment and their family carers.
Methods: Qualitative interviews with 27 people with cognitive impairment and 26 carers (20 dyads) using four memory services before and after diagnosis disclosure were conducted. Interview transcripts were subject to constant comparative analysis and interpretations subject to discussion at regular ‘analysis clinics’.
Results: Twelve sub-themes were identified along four points on the assessment journey. Feelings of confusion, uncertainty and anxiety over interminable waiting times dominated. Participants often felt without support to manage their uncertainties, emotions and did not know where to turn for support. Some were highly critical of the systemic process of assessment and diagnosis disclosure but were generally positive of the practice of individual professionals.
Conclusions: Service providers should review the process of assessment and diagnosis disclosure for people with cognitive impairment and their carers. They should develop a process that is person centred and accommodates the individualised preferences. The development of service systems to provide continuous relevant information and clarity to service users needs to involve all stakeholders, including people with cognitive impairment and their carers. Copyright © 2013 John Wiley & Sons, Ltd.
A carers' assessment under the Carers and Disabled Children Act 2000 is carried out at the request of the carer in order: to determine whether the carer is eligible for support; to determine the support needs of the carer (ie what will help the carer in their caring role; and help them to maintain their own health and well -being). To see if those needs can be met by social or other services Carers have a right to an assessment of their needs even where the person cared for has refused an assessment for, or the provision of community care services, provided the person cared for would be eligible for community care services.
Objectives: To determine the problems and issues of accessing specialist palliative care by patients, informal carers and health and social care professionals involved in their care in primary and secondary care settings. Data sources: Eleven electronic databases (medical, health-related and social science) were searched from the beginning of 1997 to October 2003. Palliative Medicine (January 1997–October 2003) was also hand-searched. Study selection: Systematic search for studies, reports and policy papers written in English. Data extraction: Included papers were data-extracted and the quality of each included study was assessed using 10 questions on a 40-point scale. Results: The search resulted in 9921 hits. Two hundred and seven papers were directly concerned with symptoms or issues of access, referral or barriers and obstacles to receiving palliative care. Only 40 (19%) papers met the inclusion criteria. Several barriers to access and referral to palliative care were identified including lack of knowledge and education amongst health and social care professionals, and a lack of standardized referral criteria. Some groups of people failed to receive timely referrals e.g., those from minority ethnic communities, older people and patients with nonmalignant conditions as well as people that are socially excluded e.g., homeless people. Conclusions: There is a need to improve education and knowledge about specialist palliative care and hospice care amongst health and social care professionals, patients and carers. Standardized referral criteria need to be developed. Further work is also needed to assess the needs of those not currently accessing palliative care services.
Informal caregivers of patients at the end of life perform a crucial role in maintaining and supporting patients at home. They provide a high level of demanding care, and as a consequence have been shown to have high-level information and support needs themselves. However, they are less often identified as recipients of services than as providers, and little research has addressed how services should be developed to meet their needs. This study aimed to address obstacles in the access to and provision of targeted, appropriate interventions. Eighteen informal carers participated in this qualitative study, which used a grounded approach to the analysis and generation of concepts. The data showed that while recognising their stress, anxiety and need for a caregivers' service, caregivers were highly ambivalent with regard to their own needs. The design and delivery of an intervention aimed at caregivers should take account of their high level of ambivalence by addressing their lack of identification with their role, enhancing existing coping strategies, and ensuring that interventions are accessible and acceptable.
Purpose – The perception among carers and health professionals is that the health care system remains limited in its effectiveness and accessibility to non‐institutionalized people with a mental illness. The purpose of this paper is to determine the effect of the care recipient's main disabling condition (either physical or mental) on the carer's perceived need for assistance in their role as carer.
Design/methodology/approach – Based on the data collected from the Australian Survey of Disability, Ageing and Carers, the investigation involves the non‐institutionalized recipients of care with profound and severe disabilities, aged 15 years and over, residing in private dwellings and their primary informal carers.
Findings – Regression analysis reveals that carers of those with a mental disability are 2.7 times more likely to report care needs unmet compared to carers of those with a physical disability. Further analysis using interactions shows that carers who are the adult children of mentally disabled parents report a comparatively very large amount of perceived unmet need.
Originality/value – If equity is measured in terms of perceived need rather than finite resources a case is made that primary carers of people with a mental disability experience greater burdens in care.
Aim. To review systematically research conducted during the past five years focusing on the relatives' situation and needs in end-of-life care. Background and aim. That relatives make a large contribution in the care of the dying is well-known. In this situation, relatives often have to solve many new practical problems in the care as well as dealing with the sorrow of both themselves and the dying person. In recent years, palliative care has been developed in many countries and many new studies have been carried out. Methods. A systematic search of the literature was performed in the CINAHL and Medline databases. Of the 94 papers analysed, there were 59 qualitative and 35 quantitative studies with differing designs. The studies were carried out in 11 countries and were published in 34 different journals. Results. The results were categorized in two main themes with several subthemes: (1) being a close relative – the situation: (i) exposed position – new responsibility, (ii) balance between burden and capacity and (iii) positive values; (2) being a close relative – needs: (i) good patient care, (ii) being present, (iii) knowing and communicating and (iv) support from and trusting relationship with the professional. The relative's feelings of security and trust in the professional were found to be of great importance.
Conclusion. More than twice as many studies had a descriptive/explorative design, which is of importance in the assessment of evidence. However, different studies complement one another and in summary, it can be said that analytic evidence is unequivocal: good patient care, communication, information and the attitude of the professional are of decisive importance regarding relatives' situation. These results are also in accord with earlier review studies.
Relevance to clinical practice. Staff members have a great deal of responsibility for assuring that the patient feels as good as possible, facilitating relatives’ involvement based on the family's wishes and limiting the stress and difficulties experienced by the family. The results showed that the relative's satisfaction could depend on the attitude of the professional as well as on good communication, good listening and good information. This can also be viewed as a prerequisite for the professional to get to know the family and to provide ‘care in the light’.
The Carers (Recognition and Services) Act 1995 came into force on 1 April 1996. It entitles carers who are providing substantial amounts of care on a regular basis to an assessment of their needs and ability to care. Local authorities are required to take the results of this assessment into account when making decisions about services. This paper reports the key findings of a two-year study, conducted in Wales, that evaluated the process and outcomes of assessments carried out under the auspices of the Carers Act. The findings offer insights to policy makers and practitioners and profile how care managers assess carers’ needs. In addition, the paper describes carers’ qualitative experiences of the assessment process and the difficulties care managers encounter in translating into practice the policy emphasis on supporting carers. It is suggested that separate carer assessments are not an established feature of care management practice and that care managers lack an explicit framework to direct the assessment of carers’ needs.
This paper considers the transformation of state social work over the past two decades. During this period, it is argued that a steady yet radical process of privatization has ensued which has had a considerable impact upon the experiences of ‘service users’, informal carers and social work practitioners. Not only does the private sector now dominate key sectors of social care, but it has also transformed the culture of state social work practice and many of the accepted beliefs and ideals of the social work profession. It is also argued that many of the promises made about privatization, including that it would create a more efficient and effective structure for the delivery of social care,1 have never materialized. On the contrary it is suggested that the current organization of social care is highly bureaucratic, exploits labour and is deeply ineffective at responding to the needs of vulnerable adults and children. Finally, it is proposed that, as a political project, the privatization of state social work is far from complete, and further radical reforms appear likely.
This article reports findings from the literature about available services and good practice in service provision for younger onset dementia, both from Australia and overseas. It looks at the different service needs for people with younger onset dementia, support for carers, and also lists appropriate services from Australia, UK and the US. The article acknowledges that there is still too little awareness of younger onset dementia but that there is an increasing interest from both policy makers and researchers.
Recent thinking about policy on cancer services in the UK has highlighted the importance of recognising the needs of carers, but is unclear about the ways in which this might be done. Our recent study on the psychosocial needs of cancer patients and their main informal carers was unusual in its combined focus on patients and carers experiencing the ‘cancer journey’ together. One of our aims was to contribute to an understanding of what it means to be the main carer of someone with cancer. Using the qualitative data from the 79 carers and patients we interviewed, we ask how carers negotiate their place in the cancer situation, and particularly how do carers identify their role in relation to the patient and the medical setting? We posit carers as taking part in a shifting process of ‘carerhood’ in which competing needs vie for space. Our evidence suggests carers actively negotiate the challenges of their position in dealing with issues of identity, support, and sharing. We suggest that when the carer's involvement in the cancer scenario is recognised and legitimised by others it is easier for them to attend to their own needs alongside those of the patient.
Specialist mental health services for older people have grown rapidly and successfully over the past two decades, aiming to offer services that are comprehensive, accessible, responsive, individualised, multidisciplinary, accountable, and systematic. As with all mental health problems, the burden falls on primary care (where minor morbidity often goes undetected) and specialist services tend to be reserved for those conditions and patients where diagnosis and management is problematic. The total cost of caring for people with dementia in the United Kingdom is estimated at £6bn ($9bn) a year—a figure whose impact is diluted by the fact that it combines both health and social services. We outline the current evidence of benefit in four areas: services currently available; interventions that have been shown to be effective; rating scales that should be recommended to clinicians for detecting common mental health problems; and the needs of carers.
This contribution is devoted to those who take care of others, given here the general name of carer. It is stated that there are an estimated 6.8 million carers in the UK looking after people with a very wide range of health and social needs. Caring for others is an activity that can have both good and adverse effects on the life of a carer. More attention has been focused on the bad effects but some research looks at the positive aspects of caring. The main factors affecting carers' lives are noted. In 1999 the DH launched a National Strategy for Carers with the objective of giving carers more control over services, providing community support and responding to a great diversity of need. A section here looks at carer experience of the services and support that they accessed with reference to research up to 2004. Partnership between carers and the professionals they access is discussed. Cites numerous references.
Young carers are children and young people who look after family members with illness, disabilities, mental illness or substance misuse. Many of these young carers help with personal nursing care and administration of medication as well as household tasks and care of younger siblings. Inappropriate levels of caring can impact on a child's own emotional and physical health, educational achievement and life chances. There are many reasons why young carers may remain hidden and unsupported including reluctance among some families to acknowledge children's caring roles or involve agencies because they fear family breakup. It is essential to develop proactive practice that will enable families to feel able to ask for support. Health professionals have a responsibility and are in a key position to identify these vulnerable families and mobilise support services. The key to support is the development of a whole family approach to offering co-ordinated assessments and services to support the person with care needs and their family as well as the young carer. The Whole Family Pathway is an online resource directing practitioners to support for young carers and their families. Young carers say that they would like to be listened to, provided with information, supported at school and referred to young carers' projects. The Children's Society Include Project provides training and resources for professionals who work with young carers and their families.
This article describes the development of a new service for people with dementia and their carers in a large post-industrial city in the north of England, UK. The service arose in response to the perceived inadequacies of existing respite care provision and has proved very successful in meeting the needs of people with dementia and their family carers, and in providing high levels of job satisfaction for staff. The success of the initiative can be understood using the Senses Framework and relationship-centred care as an analytic lens to identify key attributes of the service. The article also discusses implications for the development of support services more generally.
Purpose. Most stroke survivors are cared for at home by informal carers, usually their partners or children. The chronic burden of meeting these care needs can have a significant impact on the psychological well-being of the carer. The aim of this review is to analyse interventions that target psychosocial functioning in carers of stroke survivors to understand how such interventions can reduce the burden of caring. Method. Seven studies that reported on randomized controlled trials of psychosocial interventions for informal adult carers of a survivor of stroke, which reported validated measures of psychological health outcome and met a satisfactory rating of quality were included in this systematic review. Results. A forest plot of two studies that used education and counselling as the intervention for patients and spouses indicate a more favourable outcome for the intervention on the global family functioning scale. The Clarke, Rubenach, and Winsor (2003) study showed that patients were more likely to benefit from an intervention consisting of counselling and education than spouses.
The impact of funding systems on the IT systems of providers has been enormous and have prevented the implementation of designs to focused on the health issue of patients. The paradigm shift the Dutch Ministry of Health has taken in funding health care has a remarkable impact on the orientation of IT systems design. Since 2007 the next step is taken: the application of the funding concept on chronic diseases using clinical standards as the norm. The focus on prevention involves the patient as an active partner in the care plan. The impact of the new dimension in funding has initiated a process directed to the development of systems to support collaborative working and an active involvement of the patient and its informal carers. This national approach will be presented to assess its international potential, as all countries face the long term care crisis lacking resources to meet the health needs of the population.
This title looks at the needs of the service user in a care environment and the care which needs to be provided by an establishment and its staff. A better understanding of the needs of service users will improve the care skills of carers as well as satisfaction in their own work.
Designed exclusively for those providing care within the domiciliary setting, this title introduces home carers to the broad range of service user needs that they are likely to support or deliver. In exploring these across a variety of service user groups, including mental health and disability, it aims to establish the importance of recognising difference and individual need and will help develop an understanding of the types of need. These can range from physical & emotional to those of dealing with finances and housing issues. It also introduces the range of differing communication methods and behaviours presented by service users, including confusion and raises awareness of medication and medical conditions. It goes on to consider how to respond to incidences of abuse and loss of life. (DVD)
Statistics on service provision in Scotland to older people, people with learning disabilities, people with mental health problems, disabled people, carers and other users. Provides figures on domiciliary care, day care , residential care, private nursing homes, hospitals and special needs housing for each user group.
Objectives: To test the hypotheses that older people and their informal carers are not disadvantaged by home-based rehabilitation (HBR) relative to day hospital rehabilitation (DHR) and that HBR is less costly.
Design: Two-arm randomised controlled trial.
Setting: Four trusts in England providing both HBR and DHR.
Participants: Clinical staff reviewed consecutive referrals to identify subjects who were potentially suitable for randomisation according to the defined inclusion criteria.
Interventions: Patients were randomised to receive either HBR or DHR.
Main outcome measures: The primary outcome measure was the Nottingham Extended Activities of Daily Living (NEADL) scale. Secondary outcome measures included the EuroQol 5 dimensions (EQ-5D), Hospital Anxiety and Depression Scale (HADS), Therapy Outcome Measures (TOMs), hospital admissions and the General Health Questionnaire (GHQ-30) for carers.
Results: Overall, 89 subjects were randomised and 42 received rehabilitation in each arm of the trial. At the primary end point of 6 months there were 32 and 33 patients in the HBR and DHR arms respectively. Estimated mean scores on the NEADL scale at 6 months, after adjustment for baseline, were not significantly in favour of either HBR or DHR [DHR 30.78 (SD 15.01), HBR 32.11 (SD 16.89), p = 0.37; mean difference -2.139 (95% CI -6.870 to 2.592)]. Analysis of the non-inferiority of HBR over DHR using a 'non-inferiority' limit (10%) applied to the confidence interval estimates for the different outcome measures at 6 months' follow-up demonstrated non-inferiority for the NEADL scale, EQ-5D and HADS anxiety scale and some advantage for HBR on the HADS depression scale, of borderline statistical significance. Similar results were seen at 3 and 12 months' follow-up, with a statistically significant difference in the mean EQ-5D(index) score in favour of DHR at 3 months (p = 0.047). At the end of rehabilitation, a greater proportion of the DHR group showed a positive direction of change from their initial assessment with respect to therapist-rated clinical outcomes; however, a lower proportion of HBR patients showed a negative direction of change and, overall, median scores on the TOMs scales did not differ between the two groups. Fewer patients in the HBR group were admitted to hospital on any occasion over the 12-month observation period [18 (43%) versus 22 (52%)]; however, this difference was not statistically significant. The psychological well-being of patients' carers, measured at 3, 6 and 12 months, was unaffected by whether rehabilitation took place at day hospital or at home. As the primary outcome measure and EQ-5D(index) scores at 6 months showed no significant differences between the two arms of the trial, a cost-minimisation analysis was undertaken. Neither the public costs nor the total costs at the 6-month follow-up point (an average of 213 days' total follow-up) or the 12-month follow-up point (an average of 395 days' total follow-up) were significantly different between the groups.
Conclusions: Compared with DHR, providing rehabilitation in patients' own homes confers no particular disadvantage for patients and carers. The cost of providing HBR does not appear to be significantly different from that of providing DHR. Rehabilitation providers and purchasers need to consider the place of care in the light of local needs, to provide the benefits of both kinds of services. Caution is required when interpreting the results of the RCT because a large proportion of potentially eligible subjects were not recruited to the trial, the required sample size was not achieved and there was a relatively large loss to follow-up.
Current Controlled Trials ISRCTN71801032.
Objective: To examine the compass and nature of relevant research and identify gaps in the current evidence in order to determine the priority of future research about breast cancer and intellectual disability (ID).
Methods: A scoping study that comprised of a consultation exercise with a wide range of key stakeholders (n = 26) from one northern city (Sheffield) within the UK.
Results: This study identified numerous gaps in the current evidence base. It highlighted a dearth of research that focuses specifically on the information and support needs of women with IDs (and their carers) across the breast cancer patient pathway. Within the interviews, whilst ‘reasonable adjustments’ were being made and there was evidence of good practice, they were neither strategic nor systematic. Participants suggested that future research should focus on devising protocols to advise on the legal, ethical and clinical imperatives so that clinical governance in this area is assured.
Conclusions: There remains a dearth of research or practice guidelines at every stage of the breast cancer care pathway for women with ID. This may arguably lead to late diagnosis, suboptimal treatment and management and overall survival rates for this group. Further research is needed to understand the specific information and support needs of both women with ID (and their formal and informal carers) through the breast care pathway and to identify appropriate protocols, strategies and interventions in order to address these. Copyright © 2014 John Wiley & Sons, Ltd.
The main aim of this guide is to provide a useful resource for commissioners, managers and practitioners in a wide range of statutory and voluntary sector organisations to implement telecare for the benefit of people living in their local communities.
The guide provides supporting information and checklists to be read in conjunction with The Department of Health Guidance 'Building Telecare in England' (July 2005).
To learn more about the needs and experiences of young carers for patients of frontotemporal dementia (FTD) in order to create a relevant support website for young caregivers to dementia patients.
Two focus groups were held with a total of fourteen young carers aged 11-18. The data corpus was collected through a semi-structured interview facilitated by a medical journalist who had prior experience as a caregiver to a patient with FTD. The transcripts were narrowed to a dataset for descriptive analysis using a coding scheme to reveal the main themes of their responses.
Seven overlapping theme areas were: emotional impact of living with a parent with FTD, caregiving, coping, symptoms, diagnosis, relationships, and support. Based on the participants' responses, a website was launched providing supportive information and counsel for young carers.
Young carers saw the experience of caring for a parent with early-onset dementia as positive overall, but identified opportunities for professionals to assist them in overcoming stigma and the challenge of balancing childhood and adolescent development within this context.
This study examines distant caregiving relationships to achieve a better understanding of the function of compliance, outgroup typicality, and honest explanations from an intergroup communication perspective. With more families living at a distance due to our increasingly mobile society, long-distance caregiving (LDC) is a unique and growing caregiving situation that caregivers must face. LDC differs for caregivers and patients in close geographic proximity due to lack of availability, lack of intimate understanding of the caregiving needs at hand, and unknown financial burdens. As family residential distance increases, additional and unknown stressors are placed on individuals who provide distant care to an aging adult; however, little is known about different accommodation types used in situations of close-proximity as compared with distance caregiving situations. A sample of 130 self-identified distant family caregivers completed an online survey about their communication with their care recipient. This study is one of the first known to examine communication in the distant family caregiving context, and it offers possibilities for future research on communication barriers and health issues that impact this growing population.
Worldwide people with dementia are usually cared for at home by informal carers who may themselves have poor health and/or live in social situations which intensify their needs. The scale of these needs continues to be underappreciated and they are exacerbated by the limited social, cultural and emotional resources that carers can draw upon. This paper looks at the disparities in support, and the complex negotiations made by carers, as they reconcile the everyday realities of informal care in the home. Appreciation of these issues is essential in understanding carers' coping strategies in an ageing population.
Recognising their valuable role as key informants, this study examines the perspectives of front-line palliative care providers (FLPCP) regarding a social benefit programme in Canada designed to support family caregivers at end-of-life, namely the Compassionate Care Benefit (CCB). The CCB’s purpose is to provide income assistance and job security to family caregivers who take temporary leave from employment to care for a dying family member. Contributing to an evaluative study that aims to provide policy-relevant recommendations about the CCB, this analysis draws on semi-structured interviews undertaken in 2007/2008 with FLPCPs (n = 50) from across Canada. Although participants were not explicitly asked during interviews about their expectations of the CCB, thematic content analysis revealed ‘expectations’ as a key finding. Through participants’ discussions of their knowledge of and familiarity with the CCB, specific expectations were identified and grouped into four categories: (1) temporal; (2) financial; (3) informational; and (4) administrative. Findings demonstrate that participants expect the CCB to provide: (1) an adequate length of leave time from work, which is reflective of the uncertain nature of caregiving at end-of-life; (2) adequate financial support; (3) information on the programme to be disseminated to FLPCPs so that they may share it with others; and (4) a simple, clear, and quick application process. FLPCPs hold unique expertise, and ultimately the power to shape uptake of the CCB. As such, their expectations of the CCB contribute valuable knowledge from which relevant policy recommendations can be made to better meet the needs of family caregivers and FLPCPs alike.
The author looks at three areas of the Care and Support Bill: the rights of carers, rights to funded advocacy and eligibility. Under the Bill carers will have rights to funding for services for the first time and there will be funding for independent advocates for those who will struggle to navigate the social care system alone. However, as the author explains, eligibility criteria may mean that people with moderate needs will fall outside the system.
Narrative methods have played a minor role in research with dying patients to date, and deserve to be more widely understood. This article illustrates the utility and value of these methods through the narrative analysis of semi-structured interview data gathered in a series of interviews with two terminally ill cancer patients and their spouses. The methods and findings associated with these two case studies are outlined and discussed, The authors' contention is that an analytical focus on the naturalistic storytelling of patients and informal carers can throw new light on individuals 'perceived illness states and symptoms, care-related needs, behaviors, and desires. In addition, the juxtaposition of two cases that share a number of markers of risk and need at the end of life illustrates how the narrative analysis of patients' experiential accounts can assist in uncovering important distinctions between cases that are of relevance to care management.
Background: The inverse care law proposing that medical services are distributed inversely to population health needs, and that this law operates more completely where medical care is most exposed to market forces, was first suggested by Tudor Hart in 1971. This paper considers whether an inverse care law can be observed for the provision of informal care as well as for medical care.
Aim: Using data from the 2001 census we sought to investigate the contemporary relevance of the inverse care law.
Design of study: Cross-sectional study.
Setting: England and Wales.
Method: Data from the 2001 census for the population of England and Wales were analysed at the county, unitary, or former metropolitan authority level. The prevalence of the conjunction of general health status and limiting long-term illness was correlated with the percentage of the local population who were working as qualified healthcare workers (nurses, qualified medical practitioners, dentists, and other health professionals and therapists) and with the percentage of the population providing 50 or more hours of unpaid care per week.
Results: In 2001, 7.6% of people reported that their health was not good and that they had a limiting long-term illness (the need for care). Over one million people reported providing 50 or more hours of unpaid care per week. An inverse care law was found at the ecological level between the need for care and the proportion of the population who were working as qualified medical practitioners, dentists, and other health professionals. Informal care was almost perfectly positively correlated with the need for care (r = 0.97). These relationships were more marked for areas in the north of the country compared with the south. In the north more people provide unpaid care as more people need that care and because there are fewer working qualified medical professionals, other than nurses, providing such care per head.
Conclusions: Medical care is distributed inversely to need, whereas the provision of informal care is positively related to need — where care is most needed, informal care is most likely to be provided. The greater the market forces that are allowed to intervene in the relationships between the need for care and its provision, the more likely the inverse care law is to be found to apply. Where no market forces apply, where people give up their time for free to provide care, an almost perfectly positive care law is found to apply.
Family support groups (FSG) are an important source of intervention for caregivers of an older, frailer, or ill family member. Whether and how FSG works within ethnic minority groups is not well understood, however. Drawing on data from a sub-set of a larger qualitative study focused on exploring the impact of participating in a family support group, this study examined how culture influenced the FSG experience of Chinese family caregivers. In-depth, personal interviews were conducted with six Chinese family caregivers about their experiences participating in a family support group. Analysis suggested that while many of the participants' experiences with the family support groups were not inconsistent with those reported by mainstream participants, the overarching theme that dominated their stories was different and was strongly linked to culture by all of the participants. Specifically, participants framed their experience in the support groups as pivotal for helping them become more assertive in relation to the care needs of their relative and themselves. Through the process of attending the groups, participants began to: (1) challenge the cultural values and beliefs about “speaking out” as negative, (2) reframe and recognize the value of “speaking out” as an important aspect of care provision, and (3) re-envision a new framework for providing care. This enabled family members to reposition themselves in their care-partnering role and find a voice within the broader health care system.
Objective: To estimate service demand (willingness to seek or use services) for respite care among informal, primary carers of people with a psychological disability and to describe their characteristics. Methods: Analysis of data from the household component of the 2009 Survey of Disability Ageing and Carers (n=64,213 persons). Results: In Australia in 2009, 1.0% of people aged 15 years or over (177,900 persons) provided informal, primary care to a co-resident with a psychological disability. One-quarter (27.2%) of these carers reported service demand for respite care, of whom one-third had used respite services in the past three months and four-fifths had an unmet need for any or more respite care. A significantly greater percentages of carers with service demand for respite care spent 40 or more hours per week on caregiving, provided care to a person with profound activity restrictions and reported unmet support needs, compared to carers without service demand. Lack of suitable, available respite care models was a barrier to utilisation. Conclusions: Findings confirm significant service demand for, and under-utilisation of, respite care among mental health carers. Implications: Increased coverage of respite services, more flexible service delivery models matched to carers’ needs and better integration with other support services are indicated.
It is frequently asserted that the views of patients or service users should inform the structure and delivery of health and social care services. In the UK, patient participation, the expertise of service users and user involvement in the design and outcomes of research have been repeatedly emphasized as producing services which are more responsive, better coordinated and less stigmatizing. The NHS has highlighted the importance of involving service users in education and training. This article reports on user and carer views about learning disability nursing. Data were collected as part of a larger project considering the changing roles and education of learning disability nurses in England.The article concludes with a series of challenges for future educational and service development.
Issues related to paid work and care are of global importance, reflecting the twin pressures of population ageing and efforts to increase labour market participation. Informal carers of sick, disabled or older people can experience tensions between policies aimed at support for care and support for employment. This article discusses a study of carers’ decision-making around work and care, drawing on evidence from interviews with 80 working-age carers in England. Carers are not homogeneous; their circumstances and needs differ reflecting age, gender, ethnicity, labour market participation, and the condition and/or needs of the person they support. This diversity is illustrated by contrasting rural and urban carers’ decisions and experiences about work and care. Key factors that impact on carers’ decisions are: current and anticipated financial need; the constraints arising from receipt of carers’ and other means-tested income maintenance benefits; personal identity; job opportunities and scope for flexibility; social services provision; carers’ own health. Distance, travel times and transport are unique additional challenges for rural carers who (wish to) work. These difficulties are further intensified when they intersect with other factors such as the Carer's Allowance, the local labour market and social services provision. The findings are evaluated in terms of the adequacy of current government policy measures.
There has been much debate about the most appropriate site for in‐patient psychiatric care for people with learning disabilities. The evidence base for service delivery for this group is very scant. Even less is known about the experiences of service users and their carers, as their voices have been largely absent from this debate among service providers and policy makers. This article summarises results from a study into the experiences of adults with learning disabilities who were admitted for in‐patient psychiatric care. Their carers' views were also investigated. Differences between generic and specialist provision are considered, and implications for service delivery are discussed. Generic services in particular would appear in need of considerable improvements if they are to meet the needs of people with learning disabilities in line with current policy guidelines. Recommendations for improvement include greater sensitivity of staff to the needs of this group, increased provision of accessible information about treatment options and medication, and more careful consideration of the need to involve regular carers during the admission.
Background: The aging society will bring an increase in the number of people with dementia living in the community. This will mean a greater demand on care and welfare services to deliver efficient and customized care, which requires a thorough understanding of subjective and objective care needs. This study aims to assess the needs of community-dwelling people with dementia as reported by themselves and by their informal carers. The study also aims to give insight into the service use and gaps between needs and the availability of services.
Methods: 236 community-dwelling people with dementia and 322 informal carers were interviewed separately. (Un)met needs were assessed using the Camberwell Assessment of Needs for the Elderly (CANE).
Results: Most unmet needs were experienced in the domains of memory, information, company, psychological distress and daytime activities. People with dementia reported fewer (unmet) needs than their carers. Type and severity of dementia, living situation and informal carer characteristics were related to the number of reported needs.
Conclusions: This study showed a large number of unmet needs in dementia. Reasons for unmet needs are lack of knowledge about the existing service offer, a threshold to using services and insufficient services offer. These results provide a good starting point for improving community care for people with dementia.
BACKGROUND: There is a growing appreciation of the role and needs of carers for people with mental health problems. Carers are a diverse group, including partners, relatives and friends who are seen as such by service users.
METHODS: Sixty-four carers of people with severe mental health problems served by four different mental health care providers were interviewed using the Experiences of Care-giving Inventory. The districts were selected to differentiate services that are targeted at more severely impaired users from those that include a wider spectrum, and to contrast services that have greater integration between health and social care providers with those whose health and social care agencies operate relatively discretely.
RESULTS: In the two districts where service users had more severe mental health problems, carers worried more about negative symptoms and thought less about good aspects of the caring relationship. In the two districts where health and social services worked more closely together, carers worried significantly less about the need to back up services.
CONCLUSIONS: These findings suggest that service organisation can affect carers, in particular that integration between health and social care for people with mental health problems may benefit carers in ways that were hitherto unproven. They highlight the needs of carers for younger people. They show that the ECI is a useful instrument in measuring the impact of caring for people with severe mental health problems.
This paper examines the changed social circumstances of older people in South Korea and specifically the increased need for formal health and social services for those who are frail and have no informal carers. The article begins with a summary account of the country's exceptionally rapid demographic, economic and social transformations, which demonstrates a widening gap between the population's expectations and needs, and health and social service provision. It then examines the recently initiated and now burgeoning welfare programmes, with particular attention to health and social services for sick and frail older people. Most extant care services are accessed mainly by two minorities: the very poor and the rich. The dominant policy influence of physicians and a history of conflict between traditional and western medicine probably underlies the low current priority for ‘care’ as opposed to ‘cure’, as also for the management of chronic conditions and rehabilitation. Neither long-term care services nor personal social services are well developed. There is a marked disparity between the acute services, which are predominantly provided by private sector organisations in a highly competitive market and broadly achieve high standards, and public primary care and rudimentary residential services. The latter are weakly regulated and there are many instances of low standards of care.
To help fulfil their responsibilities towards unpaid carers, service providers need some idea of the carer's situation and how many might require support. This paper argues that estimating the prevalence of unpaid care across service planning and budgeting cycles provides a better indication of the size and composition of the carer population than estimates at a point in time. The article presents prevalence rates of unpaid adult care from the British Household Panel Survey. It estimates the number of adults providing care at any time during the year for typical catchments or organisational settings, including social services and primary health care. It also provides related figures on carer turnover and changes in the carer population with an explanation of how they may be used and interpreted. As well as focusing on carers who are heavily involved in their caring activities, variations in the psychological well-being are assessed to provide and indication of unmet needs for support.
Unpaid family carers are the main providers of care for older people in the community. Local authority occupational therapists are required by law to assess the needs of such carers in their work, targeting their interventions to support carers' roles. This small qualitative study identified the perceived needs of nine family carers of adults with physical disabilities in one English county, exploring the extent to which these needs were met by local authority occupational therapists.
Data were collected from semi-structured qualitative interviews with nine family carers. These interviews were transcribed verbatim and analysed using elements of grounded theory methodology. Six varied categories of carers' needs emerged.
Occupational therapists met the participants' needs for practical assistance and information, but not for respite or financial assistance. Regarding support network issues, the participants reported poorly integrated community services and little initial awareness of occupational therapy. Once seen by an occupational therapist, however, they wished to remain ‘on file’ to gain instant access to a valued source of support. The recommendations made include the generation of family carer targeted occupational therapy information resources, ongoing therapist liaison to raise general practitioners' familiarity with local service provision and additional research.
This article canvases the diagnosis and treatment of Alzheimer's disease (AD), and proposes a holistic support regime for patients, carers and families. The development of services for Alzheimer's patients and their families in the Nelson Mandela Metropole since 1991 is outlined. Based on the expressed needs of families of AD sufferers specific support systems were identified, fund raising undertaken and projects initiated to offer respite to those in need of assistance. The article offers insights into the nature and treatment of AD and how, based on a query from a single family, a system of services can be developed for a community off a small resource base.
Objectives: To assess the effectiveness and cost-effectiveness of breaks in care in improving the well-being of informal carers of frail and disabled older people living in the community and to identify carer needs and barriers to uptake of respite services.
Data sources: Major electronic databases were searched from the earliest possible date to April 2008.
Review methods: Selected studies were assessed and subjected to extraction of numerical data for meta-analysis of quantitative studies and extraction of text for thematic analysis of qualitative studies. Quality of the studies was assessed using checklists specifically designed for the current review.
Results: In total, 104 papers were identified for inclusion in the quantitative synthesis, 16 of which were appropriate for meta-analysis. Carer burden was reduced at 2-6 months' follow-up in single-sample studies but not in randomised controlled trials (RCTs) and quasi-experimental studies. Depression was reduced in RCTs in the short term and for home care but not for day care. These effects, however, were not significant in random-effects models. There was a trend for longer interventions to have more positive effects than shorter interventions. There was no effect of respite on anxiety, but it had positive effects on morale and anger and hostility. Single-group studies suggested that quality of life was worse after respite use. There were increased rates of institutionalisation after respite use; however, this does not establish a causal relationship as it may be a result of respite being provided late in the caregiving career. A total of 70 papers were identified for inclusion in the qualitative synthesis. Uptake of respite care was influenced by: carer attitudes to caring and respite provision; the caregiving relationship; knowledge of, and availability of, services; the acceptability to, and impact of respite care on, care recipients; hassles resulting from the use of respite care; quality of respite care; and the appropriateness and flexibility of service provision. Carers expressed needs for active information provision about services, support offered early in the caregiving career, access to a variety of services with flexible provision, reliable transport services, continuity of care, good-quality care, appropriate environments, care that provides benefits for care recipients (socialisation and stimulation), and appropriate activities for care recipients' levels of abilities and interests.
Conclusions: There was some evidence to support respite having a positive effect on carers but the evidence was limited and weak. It is difficult, therefore, to make recommendations as to the most appropriate form of delivery of respite, apart from the suggestion that a range of services is probably most appropriate, to provide flexibility of respite provision and responsiveness to carer and care recipient characteristics and needs and also changes in those needs over time. There is a need for further high-quality larger trials that include economic evaluations.
The Irish community is the oldest minority ethnic community in Britain. Despite an older age profile than general or minority ethnic populations, as well as excesses of mental and physical ill-health and socio-economic disadvantage, the age, poor health and social profile of the community is largely ignored by policy makers and providers. Several of these factors predispose the Irish community in England to a higher incidence of dementia. Unlike other minority ethnic groups with growing numbers of people with dementia, the incidence of dementia is already high. Older Irish people are often reluctant to access mainstream services because they fail to recognise their distinct cultural needs and experiences. Irish third sector organisations provide a range of culturally specific services to older people and their carers and increasingly to those with dementia. This article uses data from a mapping exercise which identifies non-governmental services for Irish people with dementia and their carers, explaining what cultural sensitivity means for them. Changes in the UK government and the ‘Big Society’ agenda pose a threat to dementia services. However prioritising the National Dementia Strategy and revising the National Carers Strategy within this agenda could expand the role of the Irish third sector in England and improve the lives of Irish people with dementia and their carers.
Background: Most persons with dementia in the Netherlands live at home, where they are cared for by informal carers such as family members or friends, who offer this care unpaid. Their care-task poses a high burden on these informal carers, increasing the risk of health problems and social isolation. Many informal carers indicate they want more information on the behaviour of those they care for.
Aim: To develop and evaluate Into D’mentia, a simulation set in a living kitchen in which visitors experience a day in the life of someone with dementia. During this ‘day’, modern techniques such as sensors and projections, simulate the limitations of having dementia. This intervention is evaluated on usefulness and user friendliness, and on its effect on empathy, attitudes towards dementia, coping, carer burden, person-centered care capabilities and care satisfaction.
Research: Nine informal carers and 23 care professionals took part in the research into the Into D’mentia simulation. Before and after their visit, they filled in several questionnaires, with, among others, their opinion on the usefulness and user friendliness of this experience.
Results: Participants found Into D’mentia a highly useful and user friendly development. They indicated that the simulation offered good insight in the life of someone with dementia, and that they could offer better care thanks to this experience. Participants also indicated that they often thought back on their experiences in the simulation, in order to better understand the behaviour of people with dementia.
Conclusion: Into D’mentia offers a unique, accessible way to experience the limitations dementia has on daily life. Users indicate that it is a useful and user friendly innovation. Into D’mentia appears to be a suitable method to support informal and professional caregivers.
This report considers if the Department of Health is carrying out phase 1 of the Care Act in a way that is likely to achieve the government’s objectives and be value for money. It focuses on the new duties to provide assessments and services to carers, and help for self-funders, examining: the policy, financial and demographic contexts within which the changes are being implemented (Part One); the Department’s arrangements to carry out the Care Act, and local authorities preparation for 2015-16 (Part Two); and funding which the Department has provided to introduce the Care Act in 2015-16 (Part Three). The report estimates that phase 1 of the Act will cost £2.5bn to carry out from 2013-14 to 2019-20, more than half of which is for carers’ assessments and services – a new entitlement and the largest single cost. The report acknowledges that the Department consulted carefully on the Act, to understand the main risks and respond to sector concerns, and that there is wide support for the Act.
NHS teams should also make carers aware of statutory right to social services assessment and explain process. [Journal abstract]
An evaluation exploring the lives of older people living with multiple long term conditions, assessing how well the health and care system is meeting their needs. The evaluation heard the views of 36 patients, family members and carers in order to gain an insight into their experiences of living with and managing their long term conditions and the care they receive. The key findings of the evaluation include: people greatly value the care and support they receive from the NHS and the wider health and care sector, and in the main feel the care they receive is good; however, they often feel the system is not set up to cope with their multiple and complex needs; people with more than one long term condition struggle to coordinate them all and they can feel there is no support linking all of their conditions and focusing on them personally and holistically; they can feel that they are a burden within their home as well as within the health and care system, which can prevent them seeking the help and support they need; and too often, there is an absence of discussion about care and care needs, within the home and within the health care system. (Edited publisher abstract)
Caring for the Carers, is a course run by Brixham Community College's Adult and Community Learning Department in Devon for carers. This article provides an overview of the six week course which aims to give carers 'space for themselves' and covers aspects of healthy living, including relaxation, exercise, positive thinking, assertiveness and finding positive ways of meeting needs.
Background: The prevention of suicide is a key aim for health care authorities and society in general and family members have a principal role in caring for suicidal people. However, the support needs of these essential family carers are relatively unknown. Aim: To explore the support needs of family members of suicidal people. Method: Eighteen participants were interviewed using a short topic guide. Transcripts were analysed using thematic analysis and confirmed by discussion. Findings: Family members of suicidal people have unmet needs (this was the main theme). Four sub-themes emerged: having practical support, respite and advice; feeling acknowledged and included; having someone to turn-to; and consistency of support. Conclusions: Family members are perceived to have an important role in suicide prevention; however some carers experience a lack of support which impinges on their ability to undertake this role. Family members need be included in care and require support from healthcare staff.
This paper explores the care-giving experiences of informal carers in cancer contexts, drawing on both quantitative and qualitative data generated in a 3 year study in the UK on the psychosocial needs of cancer patients and their main carers. The study adopted a sociological approach to psychosocial needs, in contrast to dominant psychological and psychiatric perspectives on such needs in psycho-oncology. Data collection methods involved a descriptive cross-sectional survey of carers (an achieved sample of 262 respondents, with similar numbers of male and female carers) followed by in-depth guided interviews with a sub-sample of surveyed carers (n=32). Key findings are presented in three sections: (i) the characteristics of the survey and interview samples; (ii) the examination of the care work undertaken by informal carers; and (iii), the exploration of the emotion work undertaken by informal carers.
Care work findings: additional care work demands were an important feature of informal carers’ experiences, although this varied with the stage of the patient's disease and with the presence of either co-morbidity in patients or morbidity in carers. Specific groups of carers expressed the need for help with particular practical tasks and with the personal effects of the burden of care work. Emotion work findings:carers of either gender worked hard to manage the emotions of the patient as well as their own feeling states, and these aspects of emotion work were intimately connected. Carers felt that they had to be, and often wanted to be, ‘strong’ and ‘positive’, and to try to maximise the sense of ‘life carrying on as normal’. In doing this emotion work, carers, especially spousal carers, often symbolically shared in the illness and presented the struggle with cancer as a joint one. A concluding section considers the significance of our findings for cancer service provision.
Objective: Female family caregivers consistently report higher levels of stress and burden compared to male caregivers. Explanations for the apparently higher psychological vulnerability of female caregivers are largely missing to date. This study assesses the correlates and determinants of caregiver burden in family caregivers of advanced cancer patients with a specific focus on gender differences.
Methods: Three hundred and eight self-identified main informal caregivers of advanced cancer patients were cross-sectionally assessed using structured questionnaires for caregiver burden and hypothesised determinants of burden, including sociodemographic characteristics, caring arrangements, support needs, hope and coping style. Gender differences and predictors of burden were assessed using t-tests, chi-squared tests and univariate linear regression. Significant univariate predictors were entered in an analysis of covariance separately for men and women.
Results: Burden was significantly higher in women. Hope was the most significant protective factor against burden in both genders, together with perceived fulfilment of support needs. Only in women emotion-oriented coping and being in employment while caring were significantly predictive of higher burden in the multivariate analysis. The model explained 36% of the variance in burden in men and 29% in women.
Conclusion: Psychological support interventions for family caregivers should take gender-specific risk factors into account. Interventions focusing on keeping up hope while caring for a terminally ill family member may be a valuable addition to palliative services to improve support for family carers. Women may benefit from interventions that address adaptive coping and strategies to deal with the dual demands of employment and caring.
Aims. This paper presents the results of a systematic review examining the practical information needs of informal caregivers providing home-based palliative and end-of-life care to people with advanced cancer.
Background. Modern hospice care has led to increases in home-based palliative care services, with informal caregivers assuming responsibility for the majority of care. In response, health policy emphasises the provision of palliative care services in which both the patient and carer receive adequate support throughout illness and death. While the emotional needs of carers have been extensively researched, their practical needs with respect to the provision of physical care are yet to receive systematic attention.
Design. Systematic review.
Methods. Eligible articles were identified via electronic searches of research and evidence-based databases, hand-searching of academic journals and searches of non-academic grey literature websites. Quality of research was assessed via accepted guidelines for reviewing non-randomised, observational and qualitative literature. Data were synthesised by comparing and contrasting the findings to identify prominent themes.
Results. Research consistently highlights this lack of practical support, often related to inadequate information exchange. These deficits typically manifest in relatives adopting a ‘trial and error’ approach to palliative care. Informal carers request a greater quantity of practically-focussed information, improvements in quality and increased methods of dissemination.
Conclusion. Synthesis of the literature suggests that home-based palliative care services have been insufficiently focussed on assisting informal caregivers acquire practical nursing skills.
Relevance to clinical practice. Enhanced access to professional advice represents a potentially effective method of increasing carers’ confidence in their ability to undertake practical aspects of home-based care. Evidence suggests that nurses and other health providers may better assist home-based carers by providing the information and skills-training necessary to facilitate this. This may necessitate the involvement of carers in the design and testing of new educational interventions.
User or carer involvement is often seen as intrinsically worth while; but if such involvement is a good thing in itself, it would not matter whether changes resulted from it. However, most people argue for user or carer involvement because they think some useful change will follow as a consequence. Being involved can benefit users or carers both personally (for example, by empowering them or increasing their social contacts) and practically (for example, by enabling them to earn money or learn new skills). Improvements can be made to services as a result of involvement, leading to better relationships between users or carers and staff, and perhaps increased job satisfaction among those working in the service. Targeting services to users' needs may improve the cost-effectiveness of those services.
Background: We set out to explore whether patients with life-threatening illnesses and their informal carers consider they experience significant spiritual needs, in the context of their overall needs, how spiritual concerns might vary by illness group and over the course of the illness, and how patients and their carers think they might be supported in addressing spiritual issues. Methods: Three-monthly qualitative interviews for up to one year with 20 patients with inoperable lung cancer and 20 patients with end-stage heart failure and their informal carers. Results: We conducted 149 in-depth interviews. Spiritual concerns were important for many patients in both groups, both early and later in the illness progression. Whether or not patients and carers held religious beliefs, they expressed needs for love, meaning, purpose and sometimes transcendence. The different experiences of lung cancer and heart failure raised contrasting patterns of spiritual issues and needs. Carers voiced their own spiritual needs. Patients and carers were generally reluctant to raise spiritual issues, but many, in the context of a developing relationship with the researcher, were able to talk about such needs. Conclusions: Spiritual issues were significant for many patients in their last year of life and their carers. Many health professionals lack the necessary time and skills to uncover and address such issues. Creating the opportunity for patients and carers to discuss spiritual issues, if they wish, requires highly developed communication skills and adequate time.
There is a paucity of information regarding the extent and nature of caring provided by minority ethnic communities. The proportion of older people from these communities will dramatically increase in the next 20 years, which will be accompanied by increasing health and social care needs and an increased demand for carers. A qualitative, exploratory study was conducted to identify the health and social care needs of informal carers, who were caring for a dependent adult from a Bangladeshi community in South Wales, UK. This paper focuses on Bangladeshi carers’ access to formal support services provided by the statutory, private and voluntary sectors to assist them with their caring responsibilities. The findings are based on data collected using face-to-face, focused interviews with 20 Bangladeshi carers. Purposive and snowball sampling were used to recruit the sample. The data were analysed using thematic content analysis. The dimensions of accessibility and equity of quality of care were drawn upon to aid understanding of the findings. Bangladeshi carers faced a number of barriers in accessing health and social service provision, which impeded uptake of these services. Additionally, there was evidence of inequity in service provision. Recommendations for improving the accessibility of health and social care services are proposed, which may assist in promoting more equitable services for carers from the Bangladeshi community.
This article presents the key findings from a collaborative study about the experiences and support needs of carers whose relatives are admitted into a nursing or residential care home. Drawing upon data from carers' qualitative accounts, it considers carers' post‐admission roles, responsibilities and profiles, and the contribution carers make to the continued care of their relative. Carers' post‐admission caring experiences are described in detail and differences between spouse carers and carers involved in looking after a parent are identified. A temporal model depicting the complex and dynamic nature of carers' postadmission experiences is presented. The implications for policy and practice are discussed.
An aging population is often taken to require a profound reorganization of the prevailing health care system. In particular, a more cost-effective care system is warranted and ICT-based home care is often considered a promising alternative. Modern health care devices admit a transfer of patients with rather complex care needs from institutions to the home care setting. With care recipients set up with health monitoring technologies at home, spouses and children are likely to become involved in the caring process and informal caregivers may have to assist kin-persons with advanced care needs by means of sophisticated technology. This paper investigates some of the ethical implications of a near-future shift from institutional care to technology-assisted home care and the subsequent impact on the care recipient and formal- and informal care providers.
This examination of the extent to which carers services in Wales are accessible to Black and Minority Ethnic (BME) carers is located within the overall 'Caring about Carers - a Strategy for Carers In Wales (Implementation Plan)', a project initiated by the Welsh Assembly Government. Supported also by the Welsh Assembly Government, and carried out within the auspices of AWEMA (All Wales Ethnic Minority Association) as a BME Carers project, this study sets out to explore the needs of BME carers in Wales and the extent to which they felt that their needs were being recognised and addressed by mainstream services.
This resource is aimed at both care providers and carers focusing on the key messages from the dementia quality standard and explaining how each quality statement relates to each audience. It provides links to key resources, further information, and practical tools which are relative to carers and care providers as appropriate. Drawing on existing guidance, NICE quality standards describe the high priority areas for quality improvement using a set of specific, concise and measurable statements. They cover: discussing concerns about possible dementia; choice and control in decisions; reviewing needs and preferences; leisure activities of interest and choice; maintaining and developing relationships; physical and mental health and wellbeing; design and adaptation of housing; planning and evaluating services; independent advocacy; and involvement and contribution to the community.
The National Strategy for Carers has raised the profile of carers needs, but does social services really treat carers as co-workers. The article looks at the impact of other initiatives, such as a Welfare to Work, and the way in which policy and practice may affect attitudes to carers.
Various studies suggest that there is a preference among patients, professionals and the public for death to occur at home (Dunlop et al, 1989; Townsend et al, 1990; Hinton, 1994). Data indicates that some patients are denied the opportunity to exercise choice in the place of death. In areas where palliative rapid-response teams have been available more people have been able to die at home. This article presents the findings of an evaluation of a hospice rapid-response service in the Highlands of Scotland, which was designed to respond to the needs of people in crisis facing death. The study was designed to produce a rigorous and comprehensive description of a newly–operational service at the pilot stage. It reflects not only the views of the professionals involved but also focuses on the views of informal carers. Seventeen patients were referred to the rapid-response service in its first year of operation between April 1998 and March 1999. The service has shown some success in enabling patients to die at home and satisfaction with the service is high among professionals and lay carers.
To gather a range of perspectives on care and support and help identify priorities for the 'Caring for our future' White paper the government held an engagement exercise from September to December 2011. This included discussions with people who use care and support services, carers, local councils, care providers, and the voluntary sector. This document summarises feedback on the key reform areas identified as having the biggest impact on care and support reform: Quality and workforce; Personalisation and choice; Shaping local care services; Prevention and early intervention; Integration; and The role of financial services. The recommendations of both the Commission on Funding of Care and Support and Law Commission were also considered. There was overwhelming support to change the current system which is not meeting people's needs. Personalisation was seen as an opportunity to achieve better results with the same resources. Achieving this vision would mean a shift in resources across the health and care syste
Objective: To identify factors affecting the health-related quality of life (HRQOL) of informal caregivers assisting people with (multiple sclerosis) MS who have greater functional impairment.
Methods: Data were collected in a national survey of 530 people who provided informal care to people with MS. Multiple linear regression models analyzed these data.
Results: Poorer overall health for the person with MS, stronger agreement by caregivers that care giving was burdensome or emotionally draining, and the caregiver's need for mental health counseling in the past 12 months were associated with lower mental dimensions of HRQOL for the informal caregiver. Greater caregiver satisfaction with the access the person with MS had to MS-focused care was associated with higher mental dimensions of HRQOL among caregivers.
Conclusions: Increasing access to MS-focused care could improve not only the health of people with MS, but also improve the mental dimensions of caregiver HRQOL. Our findings highlight the importance of addressing the mental health needs of informal caregivers assisting people with MS.
The literature on carers of people with Frontotemporal dementia (FTD) is negligible compared to the vast literature on carers of people with Alzheimer’s disease (AD), and little research has compared the two groups. Research has mainly focused on identifying the behavioural characteristics of people with FTD or AD. The impact of these behaviours on the psychological well-being of carers of people with FTD is relatively unexplored. This study investigated the needs, burden, and extent of depression and anxiety in carers of people with FTD (n = 30) compared to carers of people with AD (n = 30). Findings indicated that needs of carers of people with FTD were significantly higher than those of the carers of people with AD. The elevated needs were related to the younger onset of FTD, financial dissatisfaction, typical FTD characteristics, and access to appropriate services, information and support. Results also suggested that female carers were more likely to report a greater severity and impact of disruptive symptoms associated with FTD. No significant differences were found between the two groups on carers’ levels of burden, depression or anxiety. In order to address the needs of carers of people with FTD, we recommend specific educational and support programs, raising community awareness and understanding, and tailoring existing domiciliary services and activities for people with FTD.
This paper presents findings from a qualitative study that sought to identify what works well in supporting older people to live in their own homes and local communities. Drawing on data from six focus groups conducted with key stakeholders, including older people, carers, care managers and direct service providers, the shortcomings of existing services to meet the needs of older people are recognised and the paper seeks to move discusion forward to what might help improve provision. Examples identified during the focus groups are explored and highlight the importance of enabling older people to maintain community connections and draw on existing community facilities. To be effective, support needs to be underpinned by a person‐centred approach which takes into account individual preferences and priorities, and is organised locally to where older people live. Statutory organisations are often constrained by restrictive thinking and financial pressures lead to resourcecentred rather than person‐centred responses to individuals in need. Our findings suggest that commissioners of services should be more creative in developing flexible providers in local communities and that we consider approaches that may be helpful in achieving this and transforming support arrangements. The potential of an action research programme to explore the ideas raised and enable processes for development, outcomes for older people, their carers and the communities in which they live, as well as the costs, to be tested comparatively with traditional services is noted. The importance of capacity building and investment in the independent sector and other community partners is critical to achieving change.
Aims and objectives. This study aimed to describe the significant others’ experiences and needs when a person is critically ill or injured in an acute care setting.
Background. Being a significant other to a hospitalised critically ill or injured patient is a heavily distressing life event. Addressing significant others’ needs adequately has been shown to be essential to mitigate the psychological consequences of such distressing events.
Design. A systematic review of qualitative research. Methods. Meta-ethnographic synthesis was used for analysis.
Results. The key findings are described in five major themes: uncertainty and emotional ‘roller coaster’; information – balancing hope and reality; to guard and to protect the loved one; alliance with caregivers – crucial support; and social network – support and disequilibrium.
Conclusions. The study can provide a broader understanding of the significant others’ situation. They are facing an overwhelming and emotionally challenging situation and need to be seen and heard.
Relevance to clinical practice. The results point towards the nurses’ key position in handling the needs of the significant others. This kind of description might be helpful in taking on this delicate task and might also serve as a body of knowledge to influence clinical practice guidelines and nursing interventions in this field.
Carers play an essential role in the lives of people suffering from mental health problems. Caring is very often a relational activity carried out by family members. Assertive Outreach (AO) services ought to be particularly well placed to support carers, but their impact upon families is not well understood. We set out to understand the intervention of AO services from a family perspective, and in particular to explore its meaning from the perspectives of pairs of carers. Three pairs of carer-parents participated in six individual open-ended interviews. Transcripts were analysed from an interpretative phenomenological perspective. All three families described a series of distressing crisis experiences prior to their relationship with AO. Carers had felt painfully excluded from their parental roles – both by their children and by services. Two further themes illuminated their subsequent relationship with AO: first, carers felt reassured; valued and included; and benefited from improvements in family relationships. Second, there were still concerns about the continuing relationship with professionals, and about the future of their family member – especially in relation to how services might secure these things. It was striking that there were different needs and concerns not only between the three couples but within each pair. Changing roles and relationships within the family were related to what families wanted from services. We note that engagement with systemic ways of working may prove fruitful for the development of AO services.
Background: The well-being of informal carers of people with dementia is an important public health issue. Caring for an elderly relative with dementia may be burdensome and stressful, and can negatively affect the carer’s social, family, and professional life. The combination of loss, the physical demands of caregiving, prolonged distress, and biological vulnerabilities of older carers may compromise their physical health, increase social isolation, and increase the risk of anxiety and depressive disorders. Caregiver stress is also linked to negative outcomes for the recipient of care and costs to society, including increased nursing home and hospital admissions. Consequently, carer support interventions are an important component of dementia care. Computer-mediated carer support offers a range of potential advantages compared to traditional face-to-face support groups, including accessibility and the possibility of tailoring to meet individual needs, but there has been little research on its effectiveness so far.
Objective: This mixed-methods study examined the impact of a well-respected UK-based online support forum for carers of people with dementia.
Methods: A total of 61 new forum users completed measures of anxiety (7-item Generalized Anxiety Disorder scale, GAD-7), depression (9-item Patient Health Questionnaire, PHQ-9), and quality of relationship with the person with dementia (Scale for the Quality of the Current Relationship in Caregiving, SQCRC), at baseline and again after 12 weeks of forum usage, within a pre-post design. In addition, 8 participants were interviewed about their experiences with using the forum.
Results: There was an improvement in the quality of the relationship with the person with dementia (SQCRC: P=.003). There was no change in users’ depression (PHQ-9) or anxiety (GAD-7) over the 12-week study period. Interview participants reported a range of positive experiences and benefits from using the forum. Limited negative experiences were also reported.
Conclusions: Many of the reported experiences and benefits are unique to online peer support. Further research into online peer support for carers of people with dementia is needed to clarify who benefits under what conditions.
Research findings suggest that nursing assessment and care and psychotherapy of forensic patients with personality disorder should be based on a holistic approach that addresses a wide range of their needs. Such an approach should be in collaboration with patients, informal carers, and other professionals and informed by appropriate education, training, clinical supervision, and support. Holistic care includes areas (such as physical health, cultural, spiritual, and psychosexual needs) that are addressed to a limited extent in the literature on patients with personality disorder. Despite limitations in research evidence, findings suggest that some patients with personality disorder benefit from psychotherapies, sometimes facilitated by nurse-therapists, and therapeutic community principles. These interventions should take account of patients’ cultural and spiritual needs and perspectives. Helping patients to manage anger has potentially positive consequences for their physical health, personal and work relationships, and other areas. Research is needed to consider how to deliver holistic care with limited resources and in organizations, such as prisons, with conflicting goals.
Results of the UK’s largest ever survey of people with Parkinson’s and carers
There are approximately 120,000 people with Parkinson’s in the UK. Parkinson’s is a progressive neurological disorder for which there is currently no cure. It results from the loss of the chemical messenger dopamine within the brain and affects learned voluntary movements such as walking, talking, writing and swallowing. As the condition progresses it impacts on all aspects of the person’s life and the lives of those around them. The following report contains the key fi ndings from the largest ever survey conducted in the UK of people with Parkinson’s and carers of people living with the condition. The survey provides a signifi cant insight into all aspects of life with Parkinson’s. It includes information about the experiences of diagnosis, health and social care services and support from the Parkinson’s Disease Society (PDS) as well as demographic data.
Objectives: Identify factors of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving assistance that are associated with perceptions of caregiver accomplishment. Methods: National data were collected in a telephone interview survey of 530 informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with perceptions of caregiver accomplishment among 442 of these informal caregivers (caregivers providing all data in their survey responses needed for the regression model). Results: We found that age of the person with MS and duration of caregiving measured by the number of hours per week the caregiver assisted the person with MS were significantly linked to positive perceptions of accomplishment. Conversely, the caregiver’s perception that assisting the person with MS was emotionally draining, a spousal relationship, and caregiver education levels were significantly associated with negative perceptions of accomplishment. Conclusions: Health professionals treating people with MS and their caregivers should be sensitive to the impact caregiving has on the emotional needs of caregivers and to the unique support needs of spousal caregivers. Health practitioners also should be sensitive to the variety of benefit-finding themes expressed by caregivers to facilitate the caregivers’ efforts to discover gains in their experiences assisting people with MS, such as perceptions that caregiving provides a sense of accomplishment.
Despite calls for health and social services to respond to the needs of informal carers, there is little evidence to guide practioners in the best way to provide support and/or information in situations of complex need such as brain injury. This study addressed such an intervention in a prospective descriptive study, using both qualitative and quantitative methodology. Eighty-nine patients who had been admitted to a regional neurorehabilitation unit for management of traumatic or haemorrhagic brain injuries were consecutively discharged to the community over a period of 12 months. Eighty-two of these people identified a carer who agreed to be interviewed at approximately six weeks after discharge regarding their concerns. The study identified that even soon after discharge from inpatient rehabilitation, carers wanted more information. In many cases the need for information was unrelated to either the severity of injury or level of functional deficit. In addition, requests for information were in many cases not sought spontaneously, but required prompting. Such findings have implications if interventions in this field are to have the optimum chance of succeeding in providing support and assistance.
The Health and Social Care Act 2012 introduced significant amendments to the NHS Act 2006. This guidance supports two legal duties, requiring clinical commissioning groups (CCGs) and commissioners in NHS England to enable patients and carers to participate in planning, managing and making decisions about their care and treatment through the services they commission; and to enable effective public participation in the commissioning process, so that services provided reflect the needs of local people. It highlights ways in which NHS commissioners can fulfil their statutory responsibilities, and thereby deliver personalised and responsive care to all. The document is in interactive pdf format, including as it does a wide range of tools, resources and case studies.
Objectives: The aim of this review is to discuss how existing models of information behaviour may help to improve provision of information to carers of people with dementia. The article analyses existing models of information behaviour derived from information science, describes studies that have examined these models in relation to health and discusses ways in which they help to understand the information behaviours of carers of people with dementia.
Methods: A comprehensive review of the literature on studies of information needs and a critical examination of models of information behaviours in relation to health were undertaken.
Results: Two dominant paradigms in information science research were identified, involving system-centred and user-centred approaches. System-centred approaches and studies are limited in that they have made assumptions on the types of information that people may require, the way in which information should be provided, the timing of information provision and have homogenous treated groups, failing to take account of individual preferences. In contrast, user-centred approaches recognise the unique needs of individuals and that information needs are subjective and affected by a variety of factors. User-centred models of information behaviour, particularly Dervin's sense-making theory and Wilson's Information Seeking Behaviour Models, could be useful in developing a better understanding of the information behaviours of carers of people with dementia.
Conclusion: Adopting a user-centred approach to study the information behaviours of carers of people with dementia will take account of individual needs. Testing existing models of information behaviour within this group may help to develop interventions to meet the needs of individual carers and people with dementia.
This article outlines the findings and general implications of Mental Health Foundation research into the needs of older Asians with dementia and their carers. The project was carried out in an area with an Asian majority population in North West Kent. The focus is on the identification of need and on factors which block access to care and support. There are recommendations for practitioners and commissioners about raising awareness, service development and training.
This article provides information on the movements into and out of paid work by mid-life women. This is a group whose representation in the paid workforce is growing as population ageing proceeds and as educational qualifications expand. It is also a group that will be critical to any labour supply response to the economic challenges posed by population ageing. However, current understandings of the needs and circumstances of mid-life women in paid work are limited. To help address this knowledge gap we use data from the first five waves of the Household, Income and Labour Dynamics in Australia survey (2001–2005) to identify the causal influences of health, care and other factors on the ability of mid-life women to remain in and re-enter paid work. The results show that poor health and/or substantial care roles have a negative impact on the employment chances of this group. However, importantly, there is asymmetry in these health and care effects, in that improvements in health and/or reductions in care roles do not increase the chances of returning to paid work. This finding indicates that many mid-life women who experience poor health and/or undertake large care roles face substantial long-term negative consequences for their employment chances and, thus, their retirement and pre-retirement incomes.
Government response to an independent review of choice in end of life care which sets out a national commitment to ensure that all people to have high quality, personalised end of life care built around their needs and preferences. It outlines six commitments to end variation in end of life care across the health system by 2020. These are: honest discussions between care professionals and dying people; dying people making informed choices about their care; personalised care plans for all; the discussion of personalised care plans with care professionals; the involvement of family and carers in dying people’s care; and a main contact so dying people and their families know who to contact at any time. Part Two sets out the detail of the vision to support and deliver the commitment. This will be achieved through greater personalised care, improvements to quality of end of life care in all settings, identifying and spreading innovation and best practice, improved leadership and commissioning, a skilled workforc
This paper reports key findings from a study of young people’s engagement in ‘atypical’ activities in their families. The project focused on young caring and language brokering as two roles that are not assumed to be ‘normal’ activities for children and young people. The findings presented are from a survey of 1002 young people and from one‐to‐one interviews with a sample selected from the survey sample. The voices of young people in the interview study are used in the paper to illustrate the diverse range of childhood experiences. The paper discusses some of the ways in which pastoral systems in schools can take account of diverse childhoods and family needs more effectively than they have done in the past.
Objective: As their differential needs are unknown and to inform service planning, this study (a) examined experiences of caring for adults with acquired brain injury (ABI) and (b) compared these with carers of adults with dementia.
Design: Cross-sectional postal survey. ABI carer experiences were compared with those of a previously studied group of dementia carers using equivalent instruments.
Methods: Family carers (n = 222) of adults with ABI: TBI (49%), strokes (26%), brain infections (18%) and other (7%) completed validated questionnaires assessing physical dependency and psychological problems of those cared for and carers’ own perceived burden, quality-of-life and mental health.
Results: Carer burden, quality-of-life and mental health were worse for ABI carers, but were not predicted by gender, relationship, injury type, physical dependency or cognitive problems in either ABI or dementia carers. Behavioural problems of those cared for varied between the two groups and affected carers differently. Aggressive problems significantly predicted greater burden, poor quality-of-life and mental health in ABI carers, whereas passivity/low mood significantly predicted greater burden and worse quality-of-life in dementia carers.
Conclusions: This study revealed different experiences of caring for younger adults with ABI vs. older adults with dementia, thereby supporting targeted development of services to sustain families affected by these conditions.
The aim of this study was to improve understanding of the relationship between carers' existing knowledge about dementia, their coping style and psychological morbidity. Fifty carers and patients attending day services were recruited. Carers were given questionnaires to assess knowledge of dementia, preferred coping style, anxiety, depression and strain. The results indicated that carers who demonstrated more knowledge about the biomedical aspects of dementia were more anxious. Furthermore, carers who had a preferred coping style of monitoring for threat relevant information were more anxious. Understanding more about those factors that are associated with knowledge about dementia will help to identify profiles of carers who are in need of education and in matching individually tailored interventions to carers with specific learning needs.
In the European Rosetta project three separate, previously developed, ICT systems were improved and integrated to create one modular system that helps community-dwelling people with mild cognitive impairment and dementia in different stages of the disease. The system aims to support them in daily functioning, monitor (deviations from) patterns in daily behaviour and to automatically detect emergency situations. The study aimed to inventory the end users’ needs and wishes regarding the development and design of the new integrated Rosetta system, and to describe the to be developed Rosetta system.
Qualitative user-participatory design with in total 50 persons: 14 people with dementia, 13 informal carers, 6 professional carers, 9 dementia experts, 7 care partners within the project, and 1 volunteer. In the Netherlands user focus group sessions were performed and in Germany individual interviews. Dementia experts were consulted by means of a questionnaire, an expert meeting session, and interviews.
Persons with dementia and informal carers appreciated the following functionalities most: help in cases of emergencies, navigation support and the calendar function. Dementia experts rated various behaviours relevant to monitor in order to detect timely changes in functioning, e.g. eating, drinking, going to the toilet, taking medicine adequately, performance of activities and sleep patterns. No ethical issues regarding the use of sensors and cameras were mentioned.
The user participatory design resulted in valuable input from persons with dementia, informal carers and professional carers/dementia experts, based on which a first prototype Rosetta system was built.
Aim. The aim of this study was to review research literature over the past 10 years on respite care for people affected by severe mental illness; and identify key implications for nursing practice in provision of respite care for family caregivers of people with severe mental illness.
Background. Family caregivers play an important role in health care, but need regular breaks to maintain their own health and well-being. Respite care is one of the few services available with a primary focus on supporting family caregivers. In most developed countries the notion of respite care as an extension of the health care service has been embraced, evidenced by a growing body of literature in health and health-related disciplines.
Methods. An initial literature search was undertaken using the key words ‘respite’, ‘short-term care’, ‘shared care’ and ‘day care’ in major electronic databases for nursing, psychiatry, psychology and sociology literature between 1967 and 2002, identifying 704 articles. Closer examination of the literature from 1993 to 2002 on gaps and trends in respite care for people affected by severe mental illness was conducted. This is discussed in the context of the broader literature, particularly on dementia, where the mainstream research on respite care is found.
Results. The majority of family caregiving studies identified a need for greater quality, quantity, variety and flexibility in respite provision, and the literature has remained largely silent in relation to those affected by severe mental illness. There are contradictory findings on outcomes of respite care services and a lack of controlled empirical studies and evaluative research on effectiveness.
Conclusions. Respite care is beneficial for caregivers, there is significant unmet need in provision of services for the mentally ill, and greater flexibility and the needs of caregivers should be recognised and addressed.
Introduction: In Spain and the United Kingdom, more than 80% of people with schizophrenia are cared for by informal carers who are at risk of experiencing chronic stress. If this stress is not dealt with in time, a more serious disorder could develop. The present article aims to explore the role of nursing in this group of carers and attempts to answer the question: to what extent do nurses' views of their role affect their practice with carers?
Design: A qualitative study within the framework of Grounded Theory was performed. Four in-depth interviews were analyzed.
Conclusions: Participants perceived carers as coworkers and as a resource for the patient, rather than as potential clients. However, the attitude of nurses seemed to be changing from a perspective focused on the patient and the illness to one that takes the carer's needs and health status into account. More data should be collected to confirm and explore these findings in greater depth.
Medicare home health care policy does not incorporate research evidence of effective palliative home care interventions for Alzheimer's disease and dementia patients and caregivers. This article examines the dissonance between the needs and burdens of Alzheimer's disease patients and caregivers, research results on medical and palliative care interventions, and medicalized public policy in the Medicare home health benefit. The article asserts existing research establishes a prima facie case exists for the federal government to fund a Medicare Palliative Home Care for Alzheimer's disease demonstration project. The article cites the success of the Medicare Hospice Demonstration project and Hospice Medicare Benefit in reducing costs and improving client quality of life as precedent and a model for Alzheimer's disease. Other research implications are identified.
The Caring with Confidence scheme, launched in April 2009, is described. The scheme had been designed to improve support for carers in England over 18 by equipping them with skills to help them in their role. The scheme operates group sessions and online interactive sessions on subjects such as the emotions involved in caring for someone and how to develop coping strategies.
The author examines how a government-backed scheme is helping to give carers the skills to sustain them in their roles.
Background No previous research exists specifically exploring the needs of those people severely affected by multiple sclerosis (MS).
Methods Semi-structured interviews were conducted with people identified by the referring health or social care professional as being severely affected by their MS and informal carers, in order to explore their perceptions of their illness and care. The data were analysed for themes using the constant comparative approach.
Results The data relate to 32 people severely affected by MS, who identified several broad themes, relating to loss and change, and provision of services and care. In relation to service provision, people with MS (PwMS) and their carers identified two, interlinked themes - a lack of continuity and co-ordination of care, and a lack of information about services, aids and adaptations, welfare benefits and end-of-life issues. A further theme was identified, which underpinned and linked the two other themes, that of `fighting for everything' - a sense that people had to struggle for their needs to be met.
Conclusion There is a need to develop models of care in order to better meet patients and carers needs for information, co-ordination, and to reduce the feeling of struggling to receive services. Multiple Sclerosis 2007; 13: 660-667. http://msj.sagepub.com
Looks at how the Carers (Equal Opportunities) Act will improve the lives of the UK's six million carers.
Purpose – Policy has identified the need for integrated dementia services for older people. However, the role of the formal carer within an integrated framework of service delivery has not been well articulated in practice. The aim of this paper is to understand the experiences of formal carers working with the context of an integrated dementia service by exploring findings from a research‐based evaluation.
Design/methodology/approach – The evaluation captured the experiences of formal carers working within the service via observations, semi‐structured interviews and focus groups.
Findings – Working with an integrated service brings about individual, social and organisational challenges to the role of the formal carer, in terms of: delivering flexibility and responsiveness, providing continuity of care, ensuring cross‐organisational working and acquiring skills, knowledge and expertise.
Originality/value – To facilitate the successful delivery of integrated care, the emerging role of the formal carer needs to be more clearly articulated and supported within a service context.
Objectives: To review current understanding of the knowledge and information needs of informal caregivers in palliative settings. Data sources: Seven electronic databases were searched for the period January 1994–November 2006: Medline, CINAHL, PsychINFO, Embase, Ovid, Zetoc and Pubmed using a meta-search engine (Metalib®). Key journals and reference lists of selected papers were hand searched. Review methods: Included studies were peer-reviewed journal articles presenting original research. Given a variety of approaches to palliative care research, a validated systematic review methodology for assessing disparate evidence was used in order to assign scores to different aspects of each study (introduction and aims, method and data, sampling, data analysis, ethics and bias, findings/results, transferability/generalizability, implications and usefulness). Analysis was assisted by abstraction of the key details of each study into a table. Results: Thirty-four studies were included from eight different countries. The evidence was strongest in relation to pain management, where inadequacies in caregiver knowledge and the importance of education were emphasized. The significance of effective communication and information sharing between patient, caregiver and service provider was also emphasized. The evidence for other caregiver knowledge and information needs, for example in relation to welfare and social support, was weaker. There was limited literature on non-cancer conditions and the care-giving information needs of black and minority ethnic populations. Overall, the evidence base was predominantly descriptive and dominated by small-scale studies, limiting generalizability. Conclusions: As palliative care shifts into patients’ homes, a more rigorously researched evidence base devoted to understanding caregivers knowledge and information needs is required. Research design needs to move beyond the current focus on dyads to incorporate the complex, three-way interactions between patients, service providers and caregivers in end-of-life care settings.
The voluntary and community sector (VCS) has a long tradition of providing services directly to the community and specific client groups. In doing so, the VCS has built up a reputation for diversity and innovation and for meeting the needs of people who often fall outside of the so-called mainstream health and social care system. People’s expectations of public services generally and the NHS in particular are increasing year on year. A one-size fits all approach is no longer acceptable. That means planning and designing services aroundindividuals and extending provision beyond the NHS and Social Care to include the independent sector and, most crucially, the VCS. This jointly developed agreement provides a framework for a new strategic partnership between the Department of Health, the NHS & Social Care and the VCS. It was informed by the response of the VCS to the consultation, Making Partnership Work for Patients, Carers and Service Users.
Background: Informal caregiving is an integral part of the care of people with severe mental illness, but the support needs of those providing such care are not often met.
Aims: To determine whether interventions provided to people caring for those with severe mental illness improve the experience of caring and reduce caregiver burden.
Method: We conducted a systematic review and meta-analyses of randomised controlled trials (RCTs) of interventions delivered by health and social care services to informal carers (i.e. family or friends who provide support to someone with severe mental illness).
Results: Twenty-one RCTs with 1589 carers were included in the review. There was evidence suggesting that the carers’ experience of care was improved at the end of the intervention by psychoeducation (standardised mean difference –1.03, 95% CI –1.69 to –0.36) and support groups (SMD = –1.16, 95% CI –1.96 to –0.36). Psychoeducation had a benefit on psychological distress more than 6 months later (SMD = –1.79, 95% CI –3.01 to –0.56) but not immediately post-intervention. Support interventions had a beneficial effect on psychological distress at the end of the intervention (SMD = –0.99, 95% CI –1.48 to –0.49) as did problem-solving bibliotherapy (SMD = –1.57, 95% CI –1.79 to –1.35); these effects were maintained at follow-up. The quality of the evidence was mainly low and very low. Evidence for combining these interventions and for self-help and self-management was inconclusive.
Conclusions: Carer-focused interventions appear to improve the experience of caring and quality of life and reduce psychological distress of those caring for people with severe mental illness, and these benefits may be gained in first-episode psychosis. Interventions for carers should be considered as part of integrated services for people with severe mental health problems.
Around 6 million adults in Britain help and support family, partners or friends who are ill, frail or disabled. The care they provide is unpaid. They include over 1.5 million carers who devote at least 20 hours per week to their caring activities. However, most adults provide that level of care at some point in their lives. The UK, Scottish Executive and Welsh Assembly Governments have adopted strategies that aim to support carers in their caring role and enable them to continue caring for as long as they wish to do so. Ensuring that carers' health needs are met, and helping them maintain their own health and well-being, are key elements of those strategies. New research, based on interviews with people before, during and after a period of time spent caring, shows that unpaid carers experience health inequalities compared with the rest of the general population. This leaflet summarises the findings and recommends a more thoroughgoing approach to tackling carers' needs by those responsible for improving the nation's health.
Objectives: A diagnosis of head and neck cancer (HNC) is a profound event for patients and family members who play a crucial role in their care. Eating and drinking difficulties affect patients' quality of life (QOL), but the impact on the carers' QOL has not been explored. This preliminary mixed method study reports on carer QOL over time and investigates the relationship with dysphagia.
Methods: Two hundred and eight HNC patients referred for (chemo)radiotherapy were asked to identify a carer and complete a health-related QOL and a swallowing QOL questionnaire at pre-treatment, 3 and 12 months post-treatment. Carers were given the Caregiver QOL-Cancer (CQOL-C) questionnaire at the same time points. A purposive sample of patient and carer dyads was observed over mealtimes and interviewed.
Results: Seventy per cent of carers returned a questionnaire at least once. There was no change in CQOL-C scores between pre-treatment and 3 months, but a significant improvement was found between 3 and 12 months post-treatment (p = 0.012). Patient-reported outcomes accounted for 52% of variance in carer QOL measurements (R2 = 0.52, p < 0.001). Four themes emerged from the qualitative data food provision, monitoring, motivation and changes to lifestyle.
Conclusions: Findings suggest a relationship between carer and patient QOL. Elsewhere, these two characteristics have been associated such that the greater the patients' physical care needs, the poorer the carers' and patients' QOL. Living with someone with dysphagia not only involves managing the physical swallowing difficulties but is also likely to impact on social activities such as participation in shared meals, leading to permanent lifestyle changes. Copyright © 2012 John Wiley & Sons, Ltd.
Purpose: Family carers provide the majority of home-based care for people with motor neurone disease (MND). Carers’ need for, and use of, support services are not fully understood; this study aimed to explore, from a qualitative perspective, the views of current and former family carers of people with MND.
Methods: A qualitative study was undertaken in Northwest England, using narrative interviews with current (18) and former (10) carers of a family member with MND. An optional longitudinal element involving diary completion was offered to the current carers. Data were analyzed using a thematic framework approach.
Results: Carer’s needs vary, but encompass the provision of information and training, availability of respite care, counselling, and access to trained paid-for carers.
Conclusions: There is need for a range of support services to be made available from which carers can select those most appropriate for them. Some support services are not always available for carers of this client group. There is a need for carers to access greater manual handling and training for physical care. Without sufficient support, carer burden can be overwhelming which may impact on the place of care of the patient and ultimately has implications for health and social care services.
Crisis resolution teams (CRTs) deliver acute mental health care in the community. This care implies collaboration with carers. The article explores experiences of mental health crisis from the carer’s perspective and what carers experience as helpful and/or unhelpful help from CRTs. In-depth interviews with carers are analyzed using a narrative approach. The configuration of data elements into coherent stories reveals that thematically similar experiences also have a highly personal imprint. Understanding a carer’s individual experiences and needs in a contextual, storied manner can reveal information that is crucial to the collaboration of help that is perceived as helpful within a home-based approach to a mental health crisis.
Background: Living in close emotional and physical proximity to a person who has suffered a stroke may alter almost every aspect of daily living and will inevitably impact family life. Age seems to be a factor in the experiences of stroke sufferers’ close relatives after the stroke.
Objectives: This study aimed to illuminate the experience of being a middle-aged close relative of a person who has suffered a stroke; 1 year after the stroke sufferer's discharge from a rehabilitation clinic.
Participants: Nine middle-aged close relatives of persons with a confirmed diagnosis of a first-time stroke were consecutively included in the study and interviewed.
Methods: The narrative interviews were audio-taped, transcribed verbatim and analyzed using a thematic content analysis. The study was part of a longitudinal study.
Results: Four themes emerged from the data, intertwined and in conflict with one another. A turning point was reached, and the inevitability of an altered future became self-evident, so much so that the middle-aged close relatives felt forced to accept and become reconciled to a changed way of living, even if feelings of grief from loss were still present. The middle-aged close relatives’ process of coming to awareness and recognition of their own needs was part of a complex interplay of emotions, in which they learned to leave feelings of shame and guilt behind. They experienced movement from self-denial to self-recognition in their search for their own well-being and the recovery of their strength for a functioning family life. Even if they experienced a greater sense of freedom, they still face living life within limits. A significant challenge appears to be the effects of the personality changes among the person with a stroke, and the resulting sense of being an outsider. Relatives struggled with health care providers for visibility and confirmation. Their experiences were ones of standing alone, outside a closing door to the rehabilitation. Their ability to work, the benefits of functioning home care, and support from their family helped them through these challenges.
Conclusion: This study highlights the middle-aged relatives’ realization that they will live an inevitability altered future. Individually, the stroke sufferer's relatives need support in their relationships within the family for emotional confirmation and to help them recognize and verbalize their needs without feeling guilt; gaining these supportive factors may help the relatives to recover their sense of well-being and give strength for a future, properly functioning family life.
Objectives: Many stroke caregivers are inadequately informed about stroke and its sequelae and have little preparation for the physical demands of moving, lifting, and handling often required. Our objectives are to examine the association between health education needs and physical injury sustained as a result of activities related to the caregiving role. Method: A total of 276 caregivers of veterans who suffered an acute stroke event were surveyed about their information needs and injury status. We used multi-variate logistic regression analysis to calculate adjusted and unadjusted odds ratios for injury status. Results: Results indicate that in the adjusted model, caregivers who had increased educational needs were almost twice as likely (OR: 1.80; 95% CI: 1.74-1.94) to have incurred an injury related to caregiving activities. Conclusions: Health education interventions that provide stroke caregivers with educational materials may help reduce caregiver injuries.
ABSTRACT Telecare is often regarded as a win/win solution to the growing problem of meeting the care needs of an ageing population. In this paper we call attention to some of the ways in which telecare is not a win/win solution but rather aggravates many of the long-standing ethical tensions that surround the care of the elderly. It may reduce the call on carers' time and energy by automating some aspects of care, particularly daily monitoring. This can release carers for other caring activities. On the other hand, remote and impersonal monitoring seems to fall short of providing care. Monitoring may be used to help elderly users retain independence. But it may also increase the amount of information which flows from users to carers, which can result in a form of function-creep that actually undermines independence. [ABSTRACT FROM AUTHOR];Copyright of Bioethics is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder
Changes in sexuality and intimacy after cancer were examined using open-ended questionnaire responses with 156 informal carers who were partners of a person with cancer. Interviews were conducted with 20 participants to examine changes in depth. Seventy-six percent of partners of a person with "nonreproductive" cancer types and 84% of partners caring for a person with cancer involving "reproductive" sites reported an impact on their sexual relationship. Cessation or decreased frequency of sex and intimacy was reported by 59% of the women and 79% of the men. Renegotiation of sexuality and intimacy after cancer was reported by only 19% of the women and 14% of the men. Reasons for changes to sexuality after cancer were the impact of cancer treatments, exhaustion due to caring, and repositioning of the person with cancer as a patient, not a sexual partner. Changes to sexuality were associated with reports of self-blame, rejection, sadness, anger, and lack of sexual fulfillment. Positive consequences of changes included accepting the changed sexual relationship and having increased closeness and intimacy. These findings reinforce the need to acknowledge the sexual needs of partners as well as people with cancer, by healthcare professionals working in cancer and palliative care.
This article reports research funded as part of the recent ESRC Growing Older initiative. The project ‘Family, Work and Quality of Life’ explored changes in economic and social roles across four birth cohorts passing through mid-life (45–59/64 years) in Britain. The relationship between multiple role responsibilities and a range of indicators of quality of life, including material resources, health and engagement in social activities were investigated. The research was based upon secondary analysis of four different surveys: the 2000 British Household Panel Study, the 1994–95 Family and Working Lives Survey, the 1985, 1990, 1995, and 2000 General Household Surveys, and the longitudinal Retirement Survey (1988/89 and 1994). A particularly interesting finding is that being ‘caught in the middle’, in terms of having simultaneous care-giving responsibilities to dependent children and frail parents whilst in paid work, has been atypical. Only one-in-nine British women, and one-in-ten British men, aged 45–49 years (born in 1941–45) occupy all three roles concurrently, but multiple role occupancy is increasing across cohorts, particularly the combination of caring and paid work. Role occupancy significantly affects the accumulation of pension entitlements (particularly second-tier pensions), with the effect that many women who have fulfilled the important social roles of carer and parent will face a low income in old age. Where adverse health outcomes were found, parental role in mid-life was most frequently associated with such poor health, suggesting that continued parental demands in mid-life may have negative health consequences.
Background: Family carers provide strong support for many older adults, often enabling older adults to remain at home. Little is known about the care recipients’ perspectives of the role and contributions of family carers, particularly when hospital admissions occur as part of end of life care.
Aim: This paper explores the meanings of family caring for care recipients by drawing on older adults’ perspectives about the impact of hospital admission on established family caring relationships.
Design: Exploratory semi-structured qualitative interviews. Key findings reported in this paper emerged from within the inductive research design.
Setting: Interviews were conducted in older adults’ place of residence in northwest England between June 2009 and July 2010.
Participants: Participants were 27 older adults living with heart failure (n = 13) or lung cancer (n = 14), aged 69–89 years (mean 79 ± 4.3 years) and considered by their health professionals to be in their last year of life. In 12 of the interviews, a family carer was also present and made contributions.
Findings: For community-dwelling older adults, family carers are conceptualised as ‘conductors’; making strong contributions to maintaining the rhythm of good care throughout the illness trajectory. Following older adults’ hospital admission, family carers find themselves in the role of ‘second fiddle’, their ability to work with the individual and to make or influence decisions vastly reduced. Despite this, carers continue to invest considerable effort in maintaining continuity in the carer relationship to maximise the individual's wellbeing by identifying needs, filling gaps in provision and advocating on patients’ behalf. Family carers act flexibly to provide continuity, support and take responsibility for older adults’ wellbeing across settings.
Conclusions: Nurses and family carers working together, and greater appreciation of the contribution and role of family carers by health professionals may contribute to improving the quality and continuity of care for older adults.
The purpose of this paper is to report on research in progress. The research is being undertaken by the Sacred Heart Palliative Care Community Service (SHPCCS) multidisciplinary team on information and communication issues for carers of palliative care patients and patients without carers. The aim of the study is to explore the information needs of informal carers and patients without carers. A mixed methods, mixed methodology within a case study design has been use to conduct the study and the progress thus far has highlighted a number of challenges for the team. Data collection has consisted of interviews with health care professionals, carers and patients. An important component of the research process has been engaging clinical staff as participants in the learning process which has not only benefited them but contributed to the ownership and sustainability of the project. A multidisciplinary team is conducting the research under the supervision of a Steering Committee with representatives form nursing, m
Being a close relative brings with it a large number of consequences, with the life situation changing over time. The aim of this study was to illuminate the experiences of being a middle-aged close relative of a person who has suffered a stroke 6 months after being discharged from a medical rehabilitation clinic. Narrative interviews were conducted with nine middle-aged close relatives and analysed using a content analysis with a latent approach. The analysis revealed that being close to someone who had suffered a stroke 6 months after discharge meant; a struggling for control and a renewal of family life in the shadow of suffering and hope. The middle-aged close relatives began to perceive the changed reality. They were struggling to take on something new, become reconciled and find a balance in their family life. Their ability to work, relief from caring concerns and having support and togetherness with others seemed to be essential for the close relatives in their efforts to manage their life situation and maintain their well-being. Having reached the ‘halfway point’ in their lives and still with half of their life in front of them created worries. They felt dejected about their changed relationships and roles, experience a sense of loss of shared child responsibilities, a negative impact on their marital relationships and sexual satisfaction. They felt trapped in a caring role and they worried about how to endure in the future. The middle-aged close relatives’ experiences were of being alone and neglected, in an arduous and complex life situation filled with loss and grief. The findings highlights that health professionals need to see and listen to the close relatives’ experiences of transition in order to provide appropriate support adjusted to their varying needs during a time of renewal.
This guideline covers preventing, diagnosing, assessing and managing dementia in health and social care, and includes recommendations on Alzheimer’s disease. It aims to improve care for people with dementia by promoting accurate diagnosis and the most effective interventions, and improving the organisation of services.
Oral and written evidence presented to the Health Committee inquiry into the issues facing the future of social care, focusing on people aged 65 and older. A list of witnesses is also provided. The Committee looked at how a fully integrated system could be achieved with more efficient use of resources and the improved outcomes that it could deliver. Other issues discussed in volume 1 (the full report) are commissioning, the funding and staffing integrated services, the needs of carers, and the Dilnot Commission. Volume I contains the full report and recommendations; Volume III additional written evidence.
Kirklees Council has taken up the strategic challenge to develop a Self-Care Hub, making the best use of technology to support local citizens living with a variety of long-term health conditions (LTCs). With increasing pressure on budgets and time, some service users with a LTC may see professionals for as little as an hour a year. It is therefore important to facilitate more self-care by service users. But many of them simply can’t do this at present without support, and the Self-Care Hub aims to take the service user further on the journey than they could manage on their own, while still being supported by professionals when appropriate. It aims to shift the balance towards individual responsibility. Supported by Advanced Digital Innovation (UK) Ltd, and through an extensive consultation with potential users, service provider representatives and professional clinicians, Kirklees Council has developed the Self-Care Hub concept into a rich mix of facilities for educating and informing citizens, optimising access to available services, and encouraging and developing the abilities of citizens to take more responsibility to manage their care packages themselves. The service is being developed by a consortium of public health and NHS organisations in West Yorkshire and incorporates live information drawn down from national services such as NHS Choices. The Self-Care Hub is an online resource that helps people assess their own care needs, using an interactive Virtual Assistant to guide them through their options and create their own care plan. It acts as a signpost to information and a portal into health and social services, with the aim of minimising routine and straightforward caseload on professionals such as GPs and A&E where simple information can alleviate people’s needs through self-care. Overcoming trust and perception barriers is important, as is catering for differing levels of confidence, so algorithms ensure that the right questions are asked, using self-compassionate language. Self-assessments can signpost users to tailored options, make an appointment with a Health Trainer, download an app, learn a new skill, or link to a social network. Links to other services in the council, CCG and secondary care complete the all-round provision of the Hub. The goal is to give confidence to people on self-care journeys. Self-care journeys will be measured with evidence-based tools, and users can monitor their own progress; professionals and informal carers will also be able to access metrics where appropriate to assist in the journey. It is expected that over time, professionals will adapt the way they work, building self-care journeys into their workflows, enabling more service-user involvement. The Self-Care Hub may be expanded to offer users holding their own records (PHR), online or video and telephone access to clinicians, and online access to the information held about them on professional systems. The concept and tools could be adapted for use outside Kirklees, potentially both enhancing the business case for further developing the Hub, and reducing the cost of similar provision elsewhere in England. The service goes live from summer 2014.
This draft guidance will update and replace guidance issued in 1996. The main purpose of the consultation is to help local service planners improve respite provision in line with the overall principles of enabling self care and working with carers as partners in care by improving respite planning, shifting the balance towards preventative support, and personalising support to improve outcomes both for carers and those with care needs. This guidance provides advice to adult Community Care Partnerships and to agencies engaged in children’s services on the planning and delivery of respite care.
Aim: The aim of this study was to explore the needs of dementia patients’ caregivers throughout Greece in order to use the acquired data for designing a comprehensive national dementia strategy. Methods: The work was carried out in Athens Alzheimer Association’s Day Care. A questionnaire containing 14 close question and 2 open ended was completed by 248 caregivers looking after people with dementia living at home and participating in the activities of the Day Care Centers of the Alzheimer’s Association. Results: The majority of caregivers were females (78.2%), mainly daughters or spouses. A 41.1% had 12-18 years of formal education. Most of them lived with the person with dementia (69.4%). A 57.8% reported neither difficulties nor complaints regarding the existing medical and social services they took advantage of. However, financial problems and lack of allowances were crucial issues for most of them. Moreover, caregivers needed more support in caring and especially in every day practical and legal issues. Conclusion: The findings of this survey highlight the importance of assessing the needs of family caregivers when designing health and social care policies.
This study reports on the experiences of 25 family carers of the hospital discharge planning process for their family member with a dementia. Analysis of the data indicates that the needs of family carers were not always addressed in the hospital discharge process and that discharge planning and execution is in need of improvement.
Carers play a central role in many healthcare users' lives. Although services are recognising that they must be valued and supported, there is much more to be done to ensure this unpaid workforce's wellbeing, reports Jennifer Taylor.
Purpose – The purpose of this paper was to capture carers’ views of a service in Bristol funded jointly by the Local Authority and the NHS Clinical Commissioning Group, which offers support to carers in the form of a one-off payment which they can use for anything they choose.
Design/methodology/approach – A multi-method evaluation of this integrated service was conducted between August 2012 and October 2013 to explore its impact on carers’ health and well-being. This paper presents findings from 40 interviews conducted with carers as part of the evaluation.
Findings – Many carers have little respite from very stressful situations; the break enabled them to focus on their own needs. Carers’ needs included actual short breaks away with or without those being cared for, as well as items like household equipment or exercise classes.
Research limitations/implications – The study was centred on an innovation and integrated approach to support carers in one city and provides a snap-shot of the short-term effects. Longer lasting effects are not known.
Social implications – Most carers found the support beneficial, and in some cases reported a positive effect on their own health and well-being. Effective inter-agency communication and collaboration is essential for the success of the integrated service.
Originality/value – There is limited research available on the outcomes of integrated approaches to support carers.
Little is known about those employed to support family carers of disabled people or those with longterm care needs. The term ‘carer’ is used in England to refer to family members and others who provide unpaid regular and substantial support to adults with disabilities, including older people and others unable to live independently. Among the wider social care workforce some staff are employed to provide support for these carers, but little is known about the composition and characteristics of this group of staff. The findings reported in this article are derived from quantitative secondary analysis of the National Minimum Data Set for Social Care (NMDS-SC; n = 499 034), which collects data from social care employers and reports to Skills for Care. This data set includes information about the characteristics of the workforce employed to support carers and the organisations that employ them to do so. Our analysis showed that this support workforce is mostly female, with a large number of part-time employees who are based in organisations with significantly higher turnover and vacancy rates than other organisations which provide social care. Staff who support family carers appear to be better qualified and to have longer experience within the care sector than other social care workers. From these findings we conclude that this support workforce may be affected by staff shortages themselves, and that high staff turnover rates may undermine the continuity of support given to family carers, leading to problems for existing staff. We argue that developing the potential of social care staff to support family carers requires specific attention from social care employers and policy makers.
Background: Planning for the future care of adults with an intellectual disability after the main family carer ceases their care, continues to be a sensitive and difficult time posing challenges for service providers internationally. Limited research has been undertaken on this topic because until recently, people with intellectual disability usually pre-deceased their parents. This study examined ageing carers’ preferences for future care and the support systems required to make such future plans.
Methods: The study was conducted in one region of the United Kingdom with a high proportion of family carers. A mixed methods design was employed. In Stage 1, a structured questionnaire was used to collate information on the health, caregiving demands and future planning preferences of 112 parent and sibling carers; aged 60–94 years. In Stage 2, 19 in-depth semistructured interviews were undertaken with a sample of carers to explore a range of issues around future planning.
Findings: Over half of the carers were lone carers, mainly female, with many reporting a wide range of health problems. A third of these carers reported that their caregiving resulted in high levels of anxiety. The main preference of the carers was for the person to remain in the family home, with either the family and/or paid staff to support them. A minority of parent carers preferred the person to move into the home of a sibling, although some favoured the person moving to a residential facility with other people with intellectual disabilities. The majority of carers did not want their relative to move into an older people’s residential/nursing facility. In the qualitative data, four main themes were identified around future planning: unremitting apprehension, the extent of planning, obstacles encountered and solutions for future planning. Avoidance, lack of guidance and a lack of appropriate residential provision were cited as obstacles to making future plans compounded by the emotional upset experienced by carers in thinking about the future.
Conclusion: Findings of this study clearly identify the emotional, informational and practical supports required by these ageing family carers. These findings have national and international relevance in influencing how governments and service providers support parent and sibling carers to proactively plan for the future, and in the development of both in-home and out-of-home options when a family carer can no longer provide care. This is more urgent than ever given the growing numbers of older persons with intellectual disabilities in future decades.
Dear Editor, For too long, the needs of young carers have fallen between the growing gap that separates adults’ and children’s services. Recent news coverage has once again highlighted the needs of these children but it is time to move forward and look at implementing solutions.
The new white paper in England is an opportunity for services to stop and think about their relationship with families. This article looks specifically at the situation of older family carers and why services often fail to 'make sense' to them. It shows that these families often do not get the support they need, leaving them in great anxiety about the future. Examples are given of practical initiatives that have worked successfully with older families. There are lessons for all staff working with people with learning disabilities who have older relatives - whether they work in day or residential services or are responsible for commissioning services.
Several studies have shown that the combined community-based Meeting Centres Support Programme (MCSP) for people with mild to moderate dementia and their carers were more effective in reducing behavior and mood problems of people with dementia than traditional nursing home-based (NH) day care. We therefore investigated in this study whether community-based (CO) psychogeriatric day care for people with mild to severe dementia combined with carer support (in accordance with the MCSP), is more effective than regular NH day care.
A pre-test–post-test control group design was used to compare the effect of CO and NH day care on care needs, behavior and mood problems, and quality of life of people with dementia. 138 dyads of people with mild to severe dementia and family carers participated in the study: 70 from (new and longer existing) CO day cares (experimental group), and 68 from NH day cares (control group). ANCOVAs were performed at post-tests, including baseline data as covariates.
After six months, no overall differences on outcome measures were found between CO and NH day cares. However, participants of recently started CO day cares showed fewer neuropsychiatric symptoms, whereas carers in the longer existing CO day cares reported fewer care needs compared to the control group (large effects). Persons with dementia cohabiting with their carer benefitted most from CO day care.
This study shows that combined CO day care has promising added value compared to NH day care, especially for participants with dementia cohabiting with their carer.
Government policy has directed local services to address the needs of carers as a way of maintaining care in the community. This study was initiated to enable carers to develop an information pack based upon their identified needs. Cooperative inquiry was the method used to ensure full participation of the carers. Group meetings were already in existence through a charity organization who provides a carers support network. The first author participated in a number of carers group meetings. Cooperative inquiry was used to clarify a number of themes identified and reflective cycles ensured that those themes remained relevant. It was found that carers did want to be involved in their relative's care, not as passive recipients but as collaborative care providers. To do this they need to be fully informed of the processes of care provision. Carers need information that is relevant, easily accessible and obtainable in varying degrees of comprehension. This study suggests that a culture shift within mental health nursing is necessary if professionals are to recognize that a perceived lack of support may lead to a breakdown in relationships between the carer, the person being cared for and the professionals.
Objectives Informal carers, often family members, play a vital role in supporting stroke survivors with post-stroke disability. As populations age, numbers of carers overall and those from minority ethnic groups in particular, are rising. Carers from all ethnic groups, but especially those from black and minority ethnic groups frequently fail to access support services, making understanding their experiences important. The study therefore explored the experiences of carers of stroke survivors aged 45+ years from 5 ethnic groups in accessing and receiving social care services after hospital discharge.
Design This qualitative study used 7 recorded focus groups with informal carers of stroke survivors. Data were analysed thematically focusing on similarities and differences between ethnic groups.
Setting Carers were recruited from voluntary sector organisations supporting carers, stroke survivors and black and minority ethnic groups in the UK.
Participants 41 carers from 5 ethnic groups (Asian Indian, Asian Pakistani, black African, black Caribbean, white British) participated in the focus groups.
Results Several interconnected themes were identified including: the service gap between hospital discharge and home; carers as the best person to care and cultural aspects of caring and using services. Many themes were common to all the included ethnic groups but some related to specific groups.
Conclusions Across ethnic groups there were many similarities in the experiences of people caring for stroke survivors with complex, long-term care needs. Accessing services demands effort and persistence on carers’ part. If carers believe services are unsatisfactory or that they, rather than formal services, should be providing support for stroke survivors, they are unlikely to persist in their efforts. Cultural and language differences add to the challenges black and minority ethnic group carers face.
This article will describe and examine course feedback from a local training initiative, which contributes to the improvements in the health status of people with a learning disability, who have epilepsy. The aim is to analyse how an education programme that focused on epilepsy and its management, together with a borough wide epilepsy protocol developed the skills of the local workforce. This education programme provided a framework for social care staff, enabling them to work both safely and effectively in their support of individuals with learning disabilities that have epilepsy. Learning disability nurses led this training initiative, in response to the health needs of people with learning disabilities. Success was achieved through the collaborative working across a number of agencies and through consultation with family carers and people with learning disabilities. For the purpose of this article the term social care staff refers to people employed within the community residential/day services both in statutory and nonstatutory agencies.
Background Menstruation has been shown to be problematic for many women with intellectual disabilities. There has been a greater focus on menstrual suppression or elimination than on help and training to manage menstrual care successfully. Method A cross‐sectional questionnaire survey was conducted in England to investigate the help and training currently given to women with intellectual disabilities. Results Twenty‐nine percent of the women had never been given the opportunity to learn how to manage their own menstrual care. Where someone had tried to teach the woman, this was most often her mother. Carers were giving considerable amounts of assistance with menstrual care, although some of the women with more profound disabilities were able to manage menstrual care independently. Conclusions The authors argue that all women with intellectual disabilities should have the chance to manage or assist with their own menstrual care, backed by a strategic approach to menstrual education and support.
This paper examines four specific themes relating to older carers' experience: care-giving in the context of particular roles and relationships embedded in biographical histories; care in the context of dementia; care involving skilled or complex health care-tasks; and care of an intimate/personal nature. In each case, we look at the nature of support provided by health care professionals. Analysis of the data suggests several conclusions. Older carers are carrying out a range of tasks including complex health care tasks, many of which were once part of a nurse's remit and role. Nurses approach older carers as a unique but not homogeneous group and acknowledge many of their distinct needs as well as their right to choice concerning the extent of their involvement in care-giving. However, this approach conceals several implicit assumptions and expectations about the role of older carers. In particular, professionals' emphasis on older people's individual choice jars with the latter's own experience of reciprocity existing within the context of lifetime relationships. The paper suggests that modifications have to be made in professionals' approach if older people are to be presented with choice and support in the care-giving they perform.
Until recently, the carer's perspective has dominated research on families who include someone with a learning disability and recent legislation has underlined the carer's rights. Previous research has found that some more able people with learning disabilities were very aware of their parents' growing needs, and were taking on responsibilities within the family to help and support their carer/parents. However, recent legislation still dichotomizes family members into carers and cared-for people. The present paper is based on a research study of the impact of the UK Carers Act 1995 on families with someone with a learning disability. It involved canvassing the views of people with learning disabilities about their experience of assessments and their relationships within the family. The present authors found that many people with learning disabilities expressed empathy for their carer's point of view and that several people (including some who had high support needs themselves) were performing care tasks for their elderly parents. However, no one appeared to recognize the situation as one of mutual care, and parents generally carried on defining themselves as carers since they took responsibility and exercised control. The present authors conclude that mutual caring is far more common than is recognized and includes people with severe learning disabilities. A more holistic approach to assessment of needs is required that can take into account the complex web of interdependence within a family. Rather than categorizing people into ‘carers’ and ‘cared-for’, the present authors suggest a model that recognizes mutually supportive partnerships within the family.
Objectives: Caregivers (CGs) of older adults have unique and diverse needs for intervention. The present studies describe the characteristics of CGs and caregiving situations and how these relate to CG therapy utilization patterns in a community mental health setting.
Method: Study 1: Through chart review, the researchers explored service utilization patterns and identified preliminary typologies of Caregiver Family Therapy (CFT) clients, N = 23. Study 2: By conducting a second chart review, the researchers sought to determine whether the categories that emerged in Study 1 applied to a second group of CFT clients, N = 36.
Results: Study 1: Four distinct categories of CGs emerged: High-Distress (high disorganization, high complexity), Resourceful but At-Risk (low disorganization, high complexity), Non-Committal (high disorganization, low complexity), and Model CGs (low disorganization, low complexity). Study 2: While the ability to classify CGs into category proved to have some inconsistencies, preliminary evidence suggests the ability to predict utilization once CGs were placed into category was good. In Study 2 a fifth category emerged: High Functioning but Static, which suggests CGs were on a continuum ranging from high to low on family organizational style and CG situation complexity.
Conclusion: While caregiving situations vary widely among families and across time, this article provides a preliminary typology of CGs that may assist clinicians in tailoring CG interventions to meet the needs of their clients based on information garnered early in therapy, perhaps as early as the intake process.
Over the last 30 years, the life expectancy of people with Down syndrome has increased dramatically. Significant medical advances have allowed affected persons to be seen more in the hospital setting, making it imperative that nurses understand their health care needs in order to provide positive health outcomes.
Background: Changing patterns of care for terminally ill people mean that 90% of patients in the UK now spend the majority of their last year of life at home. It is now widely accepted that supporting individuals to die at home relies heavily on the availability of family carers to provide the majority of the care needed. However, one of the most common reasons for unplanned admissions near the end of life is carers’ inability to provide continuing care. One strategy to overcome these challenges has been to offer planned respite care. Despite recent studies, in reality little is known about respite services for patients with life limiting illness, in particular how respite is experienced by the caregivers or to what extent respite services address their needs. Methods: This prospective study, comprising mixed methods of data collection, explored the experiences of 25 family carers whose relative had been admitted to the local hospice for inpatient respite care. Semi-structured interviews were conducted at two time points: pre- and post-respite. The Relative Stress Scale Inventory was administered at both interviews. Results:Just over half of the sample were caring for a relative with a diagnosis of cancer (n = 13); the majority of the others had a number of neurological conditions (n = 12). The data demonstrate that managing care for relatives with a life limiting illness was perceived to be hard work, both physically and mentally. Inpatient respite care was considered important as it enabled family carers to have a break from the ongoing care-giving responsibilities, as well as being an opportunity to experience ‘normal life’ independently. The majority of family carers felt that their expectations of respite for themselves had been achieved. The respite service was well evaluated in relation to: standard of nursing care; alternative facilities on offer, atmosphere; and other care homes. Discussion: Currently, inpatient respite services are provided to two patient groups - those in the last year of life and those with a chronic life limiting illness. However, on closer analysis, the current model of service delivery, a two-week inpatient stay, may not be best suited to those caring for a relative in the last year of life. Similarly, it might be questioned whether an inpatient hospice is the most suitable setting for those patients needing supportive care, rather than specialist palliative care. The study has raised many issues that need to be considered in the support of carers caring for relatives with a life limiting illness with uncertain trajectories.
Providing care to a partner with cancer can have a significant impact on a carer’s well-being and experience of subjectivity. However, there is little research examining how men experience the role of cancer carer, and in particular, how they negotiate constructions of gender in this role. This paper draws on a single case study of a heterosexual man caring for his partner, and conducts a narrative analysis of the construction and performance of masculine subjectivity. It was found that rather than inhabiting a stable masculinity, this carer engaged in a complex negotiation of masculinities, enacting a caring role associated with victimisation, rejection, distress and powerlessness, as well as strength and heroic resilience. We highlight the importance of the relationship context to the experience of caring, and suggest that research into the gendered experience of cancer care needs to acknowledge the active negotiation of masculinities and caring. We also discuss the utility of case study research in analyses of masculinity and cancer care, and in health psychology more broadly.
Aim and objective. This study has investigated older people’s experiences of a recent fall, its impact on their health, lifestyle, quality of life, care networks, prevention and their views on service use.
Background. Falls are common in older people and prevalence increases with age. Falls prevention is a major policy and service initiative.
Design. An exploratory, qualitative design involving two time points.
Method. A convenience sample of 27 older people from two primary care trusts who had a recent fall. Taped semi structured qualitative interviews were conducted and repeated at follow up to detect change over time and repeat falls. Data were collected on their experience of falls, health, activities of living, lifestyle, quality of life, use of services, prevention of falls, informal care and social networks. Content analysis of transcribed interviews identified key themes.
Results. The majority of people fell indoors (n = 23), were repeat fallers (n = 22) with more than half alone when they fell (n = 15). For five people it was their first ever fall. Participants in primary care trust 1 had a higher mean age than those in primary care trust 2 and had more injurious falls (n = 12, mean age 87 years vs. n = 15, mean age 81 years). The majority of non-injurious falls went unreported to formal services. Falls can result in a decline in health status, ability to undertake activities of living, lifestyle and quality of life.
Conclusions. Local informal care and support networks are as important as formal care for older people at risk of falls or who have fallen. Access to falls prevention programmes and services is limited for people living in more rural communities.
Relevance to practice. Falls prevention initiatives and services should work with local communities, agencies and informal carers to ensure equitable access and provision of information, resources and care to meet the needs of older people at risk or who have fallen.
On the basis of a report published in February 2009 by the Comptroller and Auditor General, the House of Commons Public Accounts Committee examined the Department of Work and Pensions (DWP) on the steps it has taken to improve the delivery of benefits to carers and the support it provides to help them find employment. The Committee found that the DWP's approach is complex, that their communications can be lengthy and confusing, that it has no reliable estimate of the take up rate for Carer's Allowance and that employment support provided is not well-suited to carers' needs.
Purpose: This study examined the association among caregiver labor force participation, employees' caregiving activities, and the amount and quality of care received by care recipients. Design and Methods:Telephone interviews were conducted with 478 adults who were employed full time and 705 nonemployed adults who provided care to a family member or friend aged 50 or older, identified through random sampling of California households. We assessed care recipient impairment and service problems; the amounts and types of assistance received from caregivers, family and friends, and paid providers; and caregiver utilization of support services. Results: Care recipients of caregivers employed full time were less likely to receive large amounts of care from their caregivers, more likely to receive personal care from paid care providers, more likely to use community services, and more likely to experience service problems than were care recipients of nonemployed caregivers. Employed caregivers were more likely to use caregiver support services than were nonemployed caregivers. Implications:Accommodation to caregiver full-time employment involves selective supplementation by caregivers and their care recipients, reflecting increased reliance on formal support services as well as increased vulnerability to service problems and unmet care recipient needs. These findings suggest the need for greater attention to the well-being of disabled elders whose caregivers are employed full time.
OBJECTIVES: To compare the burden of supporting demented and non-demented mentally infirm elders in an English community; determine the prevalence of emotional distress in carers and to investigate the relationship between carer well being and duration of care giving.
DESIGN: Cross-sectional study of informal carers of the elderly referred to a psychogeriatric service, using a questionnaire investigating carer socio-demography, carer-dependant interpersonal relationship in relation to care giving and care-recipient dependency needs using a modified version of the CADI; and, the 28-item GHQ.
SETTING: Lancashire communities of Fleetwood, Thornton-Cleveleys, Poulton- Le-Fylde and Over-Wyre.
RESULTS: Ninety one (72%) carers of the elderly mentally infirm participated in the study. Carers (n = 48) of the demented experienced significantly more burden, including psychological and physical health problems than carers (n = 43) of the non-demented (P = 0.001). The prevalence of emotional distress in all carers was 42% (dementia supporters = 56%, non-dementia supporters = 26%). Emotional distress in supporters was directly related to the degree of difficulties (particularly lack of private time, loss of control in caregiving tasks, patient behavioural problems) experienced in care giving, and, the degree of patient dependency needs. Carer/patient interpersonal relationship tended to worsen as care giving progressed; however, no significant association was established between duration of care and emotional distress in carers. Out of 51 carers receiving respite admission services, six (12%) considered such admissions as additional burden.
CONCLUSIONS: Carer burden, including psychological and physical health concerns, was comparatively greater in carers of the demented than in carers of the non-demented. Respite care services although beneficial to most care givers, may constitute further burden to some. Factors accounting for these observations are explained. To ameliorate carer burden, measures enabling greateravailability of private time, and, improving care giving skills, should be encouraged.