Purpose: Children with hypoplastic left heart syndrome (HLHS) experience numerous vulnerabilities during transitions from hospital to home during their first year of life. This paper examines the parents’ responses to the situations they experience during the initial interstage transition as described through illness blogs.
Design and methods: A qualitative descriptive design through inductive theme development using thematic analysis was performed for this study. Text data were used from publically available blogs written by parents of HLHS children on their feelings and experiences during transitions between hospital‐ and home‐care during the interstage period.
Results: Six blogs were analyzed. Overall, the lack of difference in normalcy for these parents and their families was apparent. Major themes included: thoughts and feelings when discharged from the hospital, difficulties with hospital readmissions, protecting their child from infection, and developing a support system.
Conclusions: Parents looked forward to going home and learned all they could about properly caring for their child before going home. They were disappointed and frustrated when returning to the hospital for either emergency or scheduled admissions and were not prepared to see their child in the intensive care unit environment again. Many parents isolated themselves and avoided the hospital as much as possible to avoid their child developing an infection. All parents had support systems through family and/or friends and found an unexpected sense of support through their blog families.
The emergency department (ED) is a critical point of identification and treatment for some of the most high-risk children with asthma. This review summarizes the evidence regarding care transition interventions originating in the ED for children with uncontrolled asthma, with a focus on care coordination and self-management education. Although many interventions on care transition for pediatric asthma have been tested, only a few were actually conducted in the ED setting. Most of these targeted both care coordination and self-management education but ultimately did not improve attendance at follow-up appointments with primary care providers, improve asthma control, or reduce health care utilization. Conducting any ED-based intervention in the current environment is challenging because of the many demands on ED providers and staff, poor communication within and outside of the medical sector, and caregiver/patient burden. The evidence to date suggests that ED care transition interventions should consider expanding beyond the ED to bridge the multiple sectors children with asthma navigate, including health care settings, homes, schools, and community spaces. Patient-centered approaches may also be important to ensure adequate intervention design, enrollment, retention, and evaluation of outcomes important to children and their families.
The majority of parents want to continue caring for their sons and daughters with disabilities at home, and they are expected and actively encouraged to do so. Notwithstanding, and for reasons that are not well understood, a substantial number of parents seek to place their disabled son or daughter out-of-home. The aim of this study was to investigate the attitudes of parent-carers in Alberta, Canada, toward out-of-home placement. The primary objective was to identify factors that may explain why some families, and not others, seriously consider out-of-home placement as an option for their child. This knowledge is vital for developing social care policies and programs that support parents and promote sustainable family care for children with disabilities. A stratified (by child age group) random sample of 538 families raising children with disabilities in Alberta, Canada took part. Participants completed the family life survey, which incorporated measures of child and family characteristics, sustainability of the daily routine, and out-of-home placement propensity. Results suggest that family placement propensity is inversely associated with the sustainability of the daily routine. Sustainability of the daily routine is, in turn, more strongly associated with social-ecological resources, including parental control-over-work and the adequacy of child care options, than with child characteristics, including activity limitations and behaviour problems. If families have the social-ecological resources they need to create and maintain a daily routine that is congruent with their values and goals, and with the needs, interests and competences of family members, then they are unlikely to give out-of-home placement any serious consideration.
Some time and temporarily scholars suggest that separation is one of the most arduous of human experiences. Given what is often a long history of unpleasant relationship endings, the clients of therapy themselves may be particularly susceptible to painful ruptures. Informed by a qualitative approach, I describe and explain how 10 Canadian children living with cystic fibrosis and their caregivers felt at the end of a research-based counselling support programme. At the programmes' end, the participants reluctantly but unquestioningly accepted the decision. However, they expressed their desire for ongoing and continuous therapeutic opportunities to help them manage weighty emotional issues, such as living with grief and loss. I theorize the findings using time and temporality scholarship. Although academics and clinicians regard them as separate pillars, I suggest that participants experience considerable overlap between "research" and practice". Further, I propose that researchers and clinicians pay attention to therapeutic endings as an important issue in research. Finally, using a time and temporality lens, I use the findings to discuss how therapeutic work might better be regarded as occurring in the space of psychological time, rather than linear time. In so doing, it is evident that time and temporality are critical to how young people with CF and their families experience therapeutic endings.
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.
Aim: The aim of this review was to assess and synthesize current literature evaluating caregiver education and coping after children were discharged with a tracheostomy.; Background: Tracheostomy tube placement is a transformative event for the child who receives it and the family members who care for the child. As a result, it is imperative to provide caregivers a comprehensive and effective education on how to care for the tracheostomy and how to cope with a tracheostomy.
Design: A systematic review of literature was conducted to explore practices associated with tracheostomy education among caregivers of pediatric patients with a tracheostomy.
Methods: A search of PubMed, CINAHL, and Web of Science revealed potential 501 articles using keywords, tracheostomy, tracheotomy, education, discharge, caregiver, and family coping. After reviewing them in a systematic fashion, 12 articles were identified that were pertinent to tracheostomy education.; Findings: This review of literature showed that discrepancies existed in how discharge education was provided and the lack of knowledge regarding tracheostomy care among caregivers despite formal education. Moreover, the caregivers reported variations in their coping capabilities and quality of life while caring for their children with a tracheostomy tube.
Conclusion: Literature on discharge education regarding tracheostomy management among caregivers of children with a tracheostomy tube is limited. Studies report poor coping strategies and quality of life among caregivers of children with a tracheostomy tube. Studies have significant limitations. Further research is warranted to understand the current practices with discharge education and follow-up of these patients at home settings.
Objective: Schooling after treatment can hold challenges for survivors of childhood cancer and caregivers who may need to act as advocates on their behalf. This study seeks to understand caregiver experiences of survivor's school-related challenges. This understudied area is critical given the 85% survivor rate for those diagnosed with childhood cancer and the disproportionate risk of learning difficulties faced by those with brain tumor or who receive therapy that targets the central nervous system.
Methods: Affected caregivers participated in open-ended interviews addressing school experiences during survivorship. Following preliminary analysis using a grounded theory approach, interviewees and other stakeholders from education, medical, and foundation communities participated in focus groups. Member-check activities explored the validity of identified themes and a model derived from interview data describing schooling challenges during survivorship.
Results: Caregivers reported schooling-related experiences were often stressful and such stressors recurred during survivors' ongoing education. They reported a lack of appropriate knowledge among themselves, school staff, and clinicians about issues their survivor faced as well as concerns about communication and uncertainties about the processes required to attain appropriate services. These themes of knowledge, communication, and process issues were embedded within family approaches to coping with difficulties as well as the specific types of late effects each survivor faced.
Conclusions: The proposed model and clinical implications provide a foundation for future research and intervention development. Such work is needed to more effectively support survivors and their caregivers with difficulties that arise during schooling following treatment for childhood cancer.
In 2006, WellChild instigated its WellChild Children's Nurse programme, which provides practical and emotional support to children with exceptional health needs and their families, enabling children to leave hospital and be cared for at home wherever possible. Some sit within community children's nursing teams, but all liaise with hospital and community colleagues, often spanning several teams within a region as well as other specialist nurses, such as palliative and learning disability nurses.
Residential treatment (RT) provides a secure setting where youth with moderate to severe emotional and behavioral disorders reside long-term to receive treatment and care. The purpose of this study was to explore caregivers' perceptions of their child's immediate transition home following residential treatment. Ten mothers of youth discharged from RT participated in a semi-structured interview approximately 4 weeks after discharge from RT in Ontario, Canada. The mothers' reports suggested that there was initially some nervousness in the family but that the youth and family members made good effort in their relationship and youth made good efforts in school. About 40% of participants reported that initially the common problems prior to admission to RT were absent; however, about 2 weeks later these problems resurfaced. Caregivers also reported that youth had difficulty connecting with friends and peers, seemed nervous when re-stablishing relationships with caregivers and had difficulty managing their emotions and life's challenges. Most participants reported a perceived lack of professional supports for caregivers and youth following RT. Participants' narratives indicated a need for a continuity of care after RT. Further implications for practice and research are discussed.
Aim: To gain insight into the post-discharge experiences of parents in relation to the adequacy of preparation for caring for extremely premature infants at home.
Method: A narrative approach was drawn on to facilitate data collection, through face-to-face semi-structured interviews with 14 parents of extremely premature infants.
Findings: Constant comparative analysis was used to allow the emergence of five key research themes - emotional and mental health of parents, uncertain outcomes, ongoing health needs of the baby, educational needs of health professionals, and parental support and preparation for transition home.
Conclusion: Parental experience of being discharged home with a premature baby can be emotionally challenging and necessitates a range of support mechanisms to help them to cope with this period of transition. Health professionals can direct parents to appropriate counselling services, resources and peer support groups. Tailored education is needed for community-based health professionals, such as health visitors, to equip them to support parents practically and emotionally during the transition home and beyond. In addition, health professionals can learn much from parents about what is needed to support them.
Objectives: To examine the relationship between stress, coping, and discharge readiness in mothers of children undergoing congenital heart surgeries.
Design: Quantitative descriptive study at three time points: pre surgery (time point I), day of hospital discharge (time point II) and 2 weeks following discharge (time point III).; Setting: Tertiary care pediatric hospital in Singapore.
Participants: One hundred mothers whose children had undergone congenital heart surgeries.
Measurements and Main Results: Data collection included self-reported questionnaires of the Pediatric Inventory for Parents and the Coping Health Inventory for Parents across three time points. Readiness for Hospital Discharge Scale was administered at hospital discharge (time point II). The utilization of health services and support was reported at post discharge (time point III). One-hundred mothers participated in this study between May 2016 and July 2017. Their mean age was 35.8 years (SD = 7.0), and the mean age of their children was 3.7 years (SD = 4.6). There was significant reduction in mean stress difficulty (Pediatric Inventory for Parents) of mothers (F = 4.58; p = 0.013) from time point I to III. No significant changes were found in the overall mean coping score (Coping Health Inventory for Parents) of mothers across time. The mean overall score for the readiness for discharge (Readiness for Hospital Discharge Scale) of mothers at hospital discharge was 207.34 (SD = 29.22). Coping through family integration subscale and communication stress predicted discharge readiness of mothers (adjusted R = 0.11; p = 0.034). Mothers who reported higher overall stress (Pediatric Inventory for Parents) 2 weeks post discharge were more likely to call a friend or family member, visit the emergency department, or have their child readmitted to hospital following hospital discharge.;
Conclusions: We identified coping by family integration and communication-related stress as predictors of readiness for discharge. Strategies targeted at communication and family integration for discharge preparation may improve caregivers' readiness for hospital discharge.
This study assessed the impact of respiratory syncytial virus-confirmed hospitalizations (RSVH) on caregivers of high-risk preterm infants. Caregivers for infants born at 29 to 35 weeks' gestational age and hospitalized for confirmed RSV disease responded to measures of self-rated and perceived infant stress (1-7; 7 = very stressful), perceived infant health (0-100; 100 = best imaginable health), and productivity impairment. Data were collected at hospital discharge through 1 month post-discharge. Caregiver responses indicated high stress levels, poor health, and productivity loss were reported at discharge; however, steady improvements were seen through 1 month post-discharge: caregiver-rated stress (from 6 to 2), infant stress (5 to 1), caregiver-perceived infant health (64 to 84), and productivity loss (mothers: 91% to 31%; fathers: 81% to 18%). Qualitative results indicated emotional impact, family routine disruption, financial concerns, and medical concerns persisted at 1 month post-discharge. This study found the caregiver burden of RSVH persists at least 1 month beyond discharge.
Respite care is one integral component of the transition process from paediatric to adult health care, and is of particular importance to individuals with medical complexities. Numerous gaps that exist within the current system limit a child and family's ability to access quality respite care during a time when it is often most needed. Identifying and addressing these gaps in a systematic and collaborative way presents an opportunity to improve the quality of life for this vulnerable, ever growing population and their families.
Objective: The purpose of this study is to understand facilitators of and barriers to achieving positive transition results among youth with spinal cord injury (SCI), and to identify areas for intervention to improve transition outcomes.
Design: This study utilized qualitative methods and analysis was completed using Interpretive Phenomenological Analysis. Participants: Participants included adolescents (n = 9, range = 13-18 years old), young adults (n = 14, range = 22-30 years old) with an SCI, and their respective caregivers (n = 17).
Results: The majority of participants had paraplegia (78%) and complete injuries (52%). The majority of caregivers were mothers (88%). Two primary themes were identified: Facilitators of Transition and Barriers to Transition. From these, five subthemes were developed for each category.
Conclusion: Youth with SCI and caregivers would benefit from organizations offering dynamic and progressive care options including social reintegration programs, peer-mentoring opportunities, and programs to teach individuals with SCI and families ways to develop motivation, resilience, and independent living skills. Last, better communication among healthcare providers and an increase of interdisciplinary and accessible adult healthcare facilities would foster greater transition successes for individuals with SCI.
Objectives: to analyze the educational demands of family members of children with special health care needs in the transition from hospital to home Methods: qualitative research conducted between February and June 2018, using the handbook on creativity and sensitivity dynamics, from the sensitive creative method; the participants were nine family caregivers of children admitted to a public hospital in Rio de Janeiro; the data were subjected to French discourse analysis
Results: the educational demands were clinical, centered on the categories complex and continuous care, technological care, modified habits, medication, development and mixed care, and social, related to the supplies and rights of children
Final Considerations: the social educational demand has emerged as a new demand to be incorporated in the care of these children. The transition from hospital to home should be progressive and have the nurse as its coordinator, with the objective of providing participatory, safe, quality care, articulated within a social network
Aims and objectives: To report parent and professional perspectives of step-down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom.
Background: In recent years, increasing numbers of children-dependent on long term assisted ventilation have been noted. Meeting the complex physical, emotional and social needs of the child and family is challenging. Many of these children spend extended periods in hospital even when medically stable.
Design: This was a qualitative study using an inductive, semantic analytic approach within a realist epistemology.MethodsData collection was carried out in 2013. Interviews took place with parents (n = 5) and focus groups with professionals (n = 26) who had experience of step-down care.
Results: Multiple benefits of step-down in the hospice were clear. Both sets of accounts suggested that for children and families life was "on hold" in hospital. Hospice was considered a home-like environment where the child and family could "live again". Parents reflected that, in hospice they were "living, not existing" while professionals highlighted hospice as nurturing and empowering the whole family, promoting the child's development while safely meeting their clinical needs.
Conclusions and relevance to clinical practice: The study highlights a number of crucial benefits to the child and family both in the immediate and longer terms. The collective perspectives therefore endorse hospice as a potential viable choice for these children and their families during the always difficult, usually protracted transition from hospital to home.
Research developing targeted treatment focused on coping with children's long-term pain after surgery is needed because of the high prevalence of chronic pain after surgery. This qualitative study aimed to: 1) understand the child's and family's experiences of pain over the course of their surgical experience, and 2) gather stakeholder input regarding potential barriers and facilitators of perioperative intervention delivery. Fifteen children ages 10 to 18 years who underwent recent major surgery, their primary caregivers, and 17 perioperative health care providers were interviewed. Interviews were coded using semantic thematic analysis. The perioperative period presented emotional challenges for families. Families felt unprepared for surgery and pain. Recovery and regaining physical functioning at home was challenging. Families struggled to return to valued activities. Families reported interest in a perioperative psychosocial intervention. Providers endorsed that families would benefit from enhanced coping skills. They emphasized that families would benefit from more detailed preparatory information. Providers suggested that flexible intervention delivery at home would be ideal. Research developing interventions addressing pain and anxiety in children undergoing major surgery is critically needed. The findings of the present study can inform intervention development with the aim of improving short- as well as long-term recovery in children undergoing major surgery.; Perspective: This qualitative study examined children and their parents' experience of long-term pain and recovery after major surgery, identifying barriers and facilitators of perioperative intervention delivery. Families experienced surgery as stressful, and felt underprepared for pain and recovery. Families and health care providers expressed interest in a preoperative intervention teaching coping skills.
Social care policy in the UK emphasises the importance of supporting young adult carers to make positive transitions to adulthood. This paper reports findings from a qualitative study which explored whether young adult carers' services in England are facilitating transitions. The research found that young adult carers' services were endeavouring to raise young adult carers' aspirations and achieve personalised outcomes, in line with the Care Act 2014. However, formal provision for young adult carers in England, in the main, designates them as adult carers. Yet, young adult carers need to have sufficient opportunities for making decisions about their futures. Strategic funding and development of services are required to enable the Act's vision to be achieved.
Parents of hospitalized children, especially parents of children with complex and chronic health conditions, report not being adequately prepared for self-management of their child's care at home after discharge. No theory-based discharge intervention exists to guide pediatric nurses' preparation of parents for discharge. To develop a theory-based conversation guide to optimize nurses' preparation of parents for discharge and self-management of their child at home following hospitalization. Two frameworks and one method influenced the development of the intervention: the Individual and Family Self-Management Theory, Tanner's Model of Clinical Judgment, and the Teach-Back method. A team of nurse scientists, nursing leaders, nurse administrators, and clinical nurses developed and field tested the electronic version of a nine-domain conversation guide for use in acute care pediatric hospitals. The theory-based intervention operationalized self-management concepts, added components of nursing clinical judgment, and integrated the Teach-Back method. Development of a theory-based intervention, the translation of theoretical knowledge to clinical innovation, is an important step toward testing the effectiveness of the theory in guiding clinical practice. Clinical nurses will establish the practice relevance through future use and refinement of the intervention.
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.
Objectives & Hypothesis: Children with home mechanical ventilation (HMV) require skilled care by trained caregivers, and their families feel the impacts of ubiquitous home nursing shortages. It is unknown which factors determine allocation; no standards for private duty nursing intensity exist. We sought to characterize provider experiences with and opinions on home nursing for children with HMV, hypothesizing providers would describe frequent home nursing gaps across clinical scenarios.
Methods: Purposeful and snowball sampling identified key informant clinical providers. Survey topics included hours of home nursing received across clinical and family scenarios. Close-ended responses were analyzed using descriptive statistics and open-ended questions coded with iterative modification for major theme agreement. Results A total of 59 respondents represented care of patients from 44 states; 49.2% physicians, 37.3% nurses, 10.2% respiratory therapists, and 3.4% case managers. Nearly all (97%) believed that families should receive more hours during initial home transition, yet less than half (47%) do. The majority (80.7%) thought the presence of other children in the home should influence nursing hours, yet only three (5.3%) reported other children have influence. Across hypothetical medical technology scenarios, providers consistently described children receiving fewer nursing hours than the providers' ideal practice. A third (31.7%) described discharging patients without any home nursing arranged.
Conclusions: This HMV provider sample highlights pervasive deficiency in home nursing provision with heterogenous interpretation of what constitutes ideal home care. Family and social contextual factors are infrequently considered in nursing allocations. Provider, community health, and family stakeholders must collaborate to generate national community practice standards for children with HMV.
Rationale: In 2016, the American Thoracic Society released clinical practice guidelines for pediatric chronic home invasive ventilation pertaining to discharge practices and subsequent management for patients with invasive ventilation using a tracheostomy. It is not known to what extent current U.S. practices adhere to these recommendations. Objectives: Hospital discharge practices and home health services are not standardized for children with invasive home mechanical ventilation (HMV). We assessed discharge practices for U.S. children with HMV. Methods: A survey of key-informant U.S. clinical providers of children with HMV, identified with purposeful and snowball sampling, was conducted. Topics included medical stability, family caregiver training, and discharge guidelines. Close-ended responses were analyzed using descriptive statistics. Responses to open-ended questions were analyzed using open coding with iterative modification for major theme agreement.
Results: Eighty-eight responses were received from 157 invitations. Eligible survey responses from 59 providers, representing 44 U.S. states, included 49.2% physicians, 37.3% nurses, 10.2% respiratory therapists, and 3.4% case managers. A minority, 22 (39%) reported that their institution had a standard definition of medical stability; the dominant theme was no ventilator changes 1-2 weeks before discharge. Nearly all respondents' institutions (94%) required that caregivers demonstrate independent care; the majority (78.4%) required two trained HMV caregivers. Three-fourths described codified discharge guidelines, including the use of a discharge checklist, assurance of home care, and caregiver training. Respondents described variable difficulty with obtaining durable medical equipment, either because of insurance or durable-medical-equipment company barriers.
Conclusions: This national U.S. survey of providers for HMV highlights heterogeneity in practice realities of discharging pediatric patients with HMV. Although no consensus exists, defining medical stability as no ventilator changes 1-2 weeks before discharge was common, as was having an institutional requirement for training two caregivers. Identification of factors driving heterogeneity, data to inform standards, and barriers to implementation are needed to improve outcomes.
This quality improvement project aimed to identify barriers and opportunities for successful transition from pediatric to adult health care for a clinic sample of youth with spina bifida. Pediatric patients (N = 16) with spina bifida between the ages of 14 and 21 years and a family member were recruited from the Spina Bifida Clinic at a large regional medical center to participate in a face-to-face semi-structured interview. A standard guide, including select questions from the National Survey of Children with Special Health Care Needs along with inquires specific to the population and clinic setting, were used for each interview. The Health Services Utilization model provided an overall conceptual framework. A total of 16 interviews with patients and family member were completed. Only 25% of the participants reported previous conversation with their pediatric providers regarding transition to adult health care. Meeting adult providers prior to transition (93.8%), a desire for a written transition plan (68.8%), and possessing a copy of the transition policy (68.8%) were identified as beneficial in transition planning. Qualitative findings suggest that parents of children with greater intellectual and physical disability reported increased worry surrounding transition when compared to parents of higher functioning children. Despite availability of published recommendations regarding transition for over a decade, challenges in transition preparation among pediatric patients with spina bifida remain. Feedback from families highlights the need for increased planning, particularly for those with greater functional impairments. Findings will guide the development of a local clinic transition program to address concerns and implement key interventions identified for youth with spina bifida, and offer insight that other nurses and clinics may use in their own settings. Results underscore the ongoing, and as yet, unmet concerns of patients and families.
Objectives: To explore parents’ experiences of transition and aftercare following their child’s discharge from a paediatric intensive care unit to an in-patient ward.
Methods: A qualitative systematic review was conducted. Electronic databases CINAHL, MEDLINE, EMBASE, Psych INFO, and ASSIA were searched for qualitative studies with no date limits imposed. Methodological quality was assessed using the JBI QARI standardised critical appraisal instrument. Data were extracted into a standardised data extraction tool. Findings were pooled using a meta-aggregative approach.
Results: Four studies were included in the final review that included a total of 95 participants. Forty-nine findings were extracted and through an iterative process resulting in four synthesised findings being developed. These included: (1) Dynamic emotional response pre, peri and post-transfer; (2) Involvement in care absent but fundamental to functioning; (3) Changes in care delivery and environment provoking adverse emotions and (4) Transition as a physical, emotional and social balancing act.
Conclusion: Transitioning from the paediatric intensive care unit to an in-patient ward can be a challenging time for parents, exposing them to a turbulent emotional and social status, and depleting their personal resources. Parents are aware of differences in the organisation and delivery of care between clinical areas which can compound the adversity experienced. Health professionals need to provide targeted support in order to mitigate these negative emotional, physical and social effects experienced.
Easing the transition from hospital to home after a tracheostomy with discharge planning is a goal of family-centered patient care in pediatric settings. Proper tracheal tube maintenance and emergency management improves outcomes and reduces re-admissions. We hypothesized that family members caring for children with new tracheostomies will report greater knowledge, confidence, and preparedness after simulated training with high-fidelity mannequins. Parents (N=29) of children pending discharge with new tracheostomies were offered simulation training after didactic and hands-on bedside training was complete. Simulation-enhanced training consisted of four scenarios escalating in difficulty of session (training exercises and didactics) with a high-fidelity simulator most closely matching their own child's age. Post-training surveys were collected from January 2014 to January 2016. Caregivers agreed strongly with nine of 10 statements regarding preparedness, confidence, and emergency management, and 97% would recommend simulation training to other parents before discharge. Responses to open-ended questions were varied. First, describing what participants appreciated and learned, 28% noted simulation experience itself, 24% noted general tracheostomy care, and 7% noted emergency management. Second, 76% offered no topics for greater focus and improvement, and 24% suggested specific improvements. Third, general comments about training were positive (80%). Overall, caregivers favorably reported greater preparedness, confidence, and knowledge of emergency management. For unknown reasons, caregivers endorsed simulation training for other parents without consensus on additional training for themselves.
Objective: The role of family and caregiver accommodation is a well-defined maintenance factor for anxiety disorders and OCD. Family accommodation for patients with eating disorders is beginning to be described and characterized, but gaps in the literature remain. The current project compares levels of accommodation in families of those with anorexia nervosa (AN) to those with avoidant/restrictive food intake disorder (ARFID). It additionally establishes whether accommodation changes over the course of treatment and the extent to which these changes are related to changes in eating disorder pathology.
Methods: A total of 39 adolescents with ARFID and 59 with AN presenting to a partial hospitalization program were included, with measures completed at intake and discharge.
Results: Caregivers of adolescents with AN and those with ARFID reported similar levels of accommodation, with the exception of the Reassurance Seeking subscale of the Accommodation and Enabling Scale for Eating Disorders (AESED). Additionally, accommodation decreased significantly from intake to discharge for both patient groups. Intake AESED scores were also significantly related to caregiver distress, and changes in AESED scores were related to decreases in relevant eating disorder psychopathology for both groups.;
Conclusions: The results of the current study highlight the importance of considering family accommodation for ARFID patients and point to the need for future research to capture changes in accommodation over the course of treatment in relation to the delivery of evidence-based interventions and subsequent changes in ED symptoms. (© 2020 Eating Disorders Association and John Wiley & Sons Ltd.)
Introduction: The transition into adulthood is a developmental stage within the life cycle. A chronic childhood condition can disrupt this transition and create major challenges for both the young person and his or her family. Little is known about families' experiences when living with a rare genetic disease. Therefore, the purpose of this literature review was to understand experiences of families living with a chronic childhood disease during transition into adulthood by integrating evidence.
Method: A systematic review using an integrative approach to data inclusion and analysis comprising qualitative, quantitative and other methodological studies about a range of genetic and chronic childhood diseases was undertaken to identify relevant information. Databases searched were PubMed, Cochrane Library, PsychINFO, CINAHL, and AMED, using the search terms (1) family, caregivers, young adult, adolescent; (2) adolescent development, transitional programs, transition to adult care; (3) muscular dystrophy, spinal muscular atrophy, cystic fibrosis, haemophilia and sickle cell disease. Study findings were critically appraised and analyzed using critical interpretive synthesis.
Results: A total of 8116 citations were retrieved. 33 studies remained following the removal of duplicates, papers unrelated to genetic childhood conditions and families' experiences of the transition into adulthood. Findings provided three perspectives: (1) the young person's perspective on how to "live a normal life in an extraordinary way" and "manage a chronic and life threatening disease"; (2) the parent perspective on the "complexity of being a parent of a chronically ill child" and "concerns about the child's future" and (3) the sibling perspective on "concerns about the siblings future". As a consequence of the genetic childhood condition, during the ill family members' transition into adulthood all family members were at risk for psychosocial difficulties as they mutually influenced each other. Previous research focused predominately on the individual illness experience, and less emphasis was put on the family perspective.
Conclusions: Young people and their family members experienced multiple challenges and not only for the ill individual but also there were consequences and health risks for the whole family system. Therefore, a family systems perspective to research and care is indicated to assist affected families to cope with their complex life and health situation.
Objective: In current practice, treatment as usual (TAU) for suicidal adolescents includes evaluation, with little or no intervention provided in the emergency department (ED), and disposition, usually to an inpatient psychiatry unit. The family-based crisis intervention (FBCI) is an emergency psychiatry intervention designed to sufficiently stabilize suicidal adolescents within a single ED visit so that they may return home safely with their families. The objective of this article is to report efficacy outcomes related to FBCI for suicidal adolescents and their families.
Methods: A total of 142 suicidal adolescents (age, 13-18 years) and their families presenting for psychiatric evaluation to a large pediatric ED were randomized to receive FBCI or TAU. Patients and caregivers completed self-report measures of suicidality, family empowerment, and satisfaction with care provided at pretest, posttest, and 3 follow-up time points over a 1-month period.
Results: Patients randomized to FBCI were significantly more likely to be discharged home with outpatient follow-up care compared with their TAU counterparts (P < 0.001). Families randomized to the FBCI condition reported significantly higher levels of family empowerment and client satisfaction with care at posttest compared with their TAU counterparts. Gains were maintained over the follow-up period. No completed suicides were reported during the study period in either condition.
Conclusions: Family-based crisis intervention is a model of care for suicidal adolescents that may be a viable alternative to traditional ED care that involves inpatient psychiatric hospitalization.
Background: Family caregivers reportedly have a powerful sense of role loss, which is felt when one senses a change in role or responsibility, relationship distancing, or a changed asymmetry. Little is known about the impact it has on the caregiving experience, so the purpose of this study was to clarify this in three distinct settings: when an individual’s primary role changed to the caregiver role after the start of caregiving; when their primary role was other than the caregiver role after this start; and when their primary role was the caregiver role before caregiving started. Methods: Sixty‐six individuals responded to an online survey, and a framework method was employed to organize the collected data and uncover themes for analysis. Results: Our findings shed light on the sense of caregiver role loss and pointed to the possibility of generating it when family caregivers rotate through held roles and the use of it as a tool to maintain or regain a sense of personal choice in life and self‐priority. Conclusions: Our study is probably the first to analyze this phenomenon in different caregiving settings based on an individual’s primary role and role transitions and brings to light a new perspective of the phenomenon by understanding how it arises, its nuances, and its impact on the caregiver’s experience.
Background: Facilitating successful care transitions across settings is a key nursing competency. Although we have achieved improvements in acute stroke care, similar advances in stroke care transitions in the postacute and return to community phases have lagged far behind. In the current delivery system, care transitions are often ineffective and inefficient resulting in unmet needs and high rates of unnecessary complications and avoidable hospital readmissions. Nurses must use evidence-based approaches to prepare stroke survivors and their family caregivers for postdischarge self-management, rehabilitation, and recovery. Objectives and methods: The purpose of this article is to provide evidence on the important nursing roles in stroke care and transition management across the care continuum, discuss cross-setting issues in stroke care, and provide recommendations to leverage nursing’s impact in optimizing outcomes for stroke survivors and their family unit across the continuum. Findings: To optimize nursing’s influence in facilitating safe, effective, and efficient care transitions for stroke survivors and their family caregivers across the continuum we have the following recommendations (1) establish a system of coordinated and seamless comprehensive stroke care across the continuum and into the community; (2) implement a stroke nurse liaison role that provides consultant case management for the episode of care across all settings/services for improved consistency, communication and follow-up care; (3) implement a validated caregiver assessment tool to systematically assess gaps in caregiver preparedness and develop a tailored caregiver/family care plan that can be implemented to improve caregiver preparedness; (4) use evidence-based teaching and communication methods to optimize stroke survivor/caregiver learning; and (5) use technology to advance stroke nursing care. Conclusions: Nurses must leverage their substantial influence over the health care delivery system to achieve these improvements in stroke care delivery to improve the health and lives of stroke survivors and their families.
This article is the first in a new series, Supporting Family Caregivers in the 4Ms of an Age-Friendly Health System, published in collaboration with the AARP Public Policy Institute as part of the ongoing Supporting Family Caregivers: No Longer Home Alone series. The 4Ms of an Age-Friendly Health System (What Matters, Medication, Mentation, and Mobility) is an evidence-based framework for assessing and acting on critical issues in the care of older adults across settings and transitions of care. Engaging the health care team, including older adults and their family caregivers, with the 4Ms framework can help to ensure that every older adult gets the best care possible, is not harmed by health care, and is satisfied with the care they receive.The articles in this new series present considerations for implementing the 4Ms framework in the inpatient hospital setting and incorporating family caregivers in doing so. Resources for both nurses and family caregivers, including a series of accompanying videos developed by AARP and the Rush Center for Excellence in Aging and funded by the John A. Hartford Foundation, are also provided. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet—Guide to the 4Ms of an Age-Friendly Health System for Family Caregivers—and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.
Aims and objectives: To synthesise qualitative research evidence on the experience of stroke survivors and informal caregivers in hospital‐to‐home transitional care. Background: Due to a shortened hospital stay, stroke survivors/caregivers must take over complex care on discharge from hospital to home. Gaps in the literature warrant a meta‐synthesis of qualitative studies on perceived enablers and barriers during this crucial period. Design: A systematic review and meta‐synthesis.MethodsA review was guided by Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) checklist where six databases were searched from April to June 2020 including CINAHL Plus, MEDLINE, PsycINFO, Scopus, Web of Science and ProQuest and ProQuest Dissertations and Theses. There was no date limit to the search. Selected studies were critically appraised. A thematic synthesis approach was applied. Results: The synthesis of 29 studies identified three major findings. First, partnerships with stroke survivors/caregivers empower discharge preparation, foster competence to navigate health and social care systems and activate self‐management capabilities. Second, gaps in discharge planning and the lack of timely postdischarge support contribute to unmet care needs for stroke survivors/caregivers and affect their ability to cope with poststroke changes. Third, stroke survivors/caregivers expect integrated transitional care that promotes shared decision‐making and enables long‐term self‐management at home. Conclusions: Hospital‐to‐home transition is a challenging period in the trajectory of poststroke rehabilitation and recovery. Further research is required to deepen understandings of all stakeholders’ views and address unmet needs during transitional care. Relevance to clinical practice: Protocols and clinical guidelines relating to discharge planning and transitional care need to be reviewed to ensure partnership approach with survivors/caregivers in the design and delivery of individualised transitional care. Stroke nurses are in a unique position to lead timely support for survivors/caregivers and to bridge service gaps in hospital‐to‐home transitional care.
Objectives: To explore the effect of care transitions intervention (CTI) on the sense of benefit-finding of caregivers for patients with acute cerebral infarction (ACI). Ninety caregivers for patients with ACI were divided into two groups according to the random number table method (n = 45 in each group). Methods: The control group was given regular health guidance, and the intervention group was given care transitions intervention on the basis of the guidance used in the control group. The changes in the sense of benefit-finding and quality of life between the two groups were compared before and after the intervention. Results: There was no statistically significant difference in caregivers between the two groups in gender, age, educational level, occupational status, gender and age of the patients, activities of daily living (ADL) scores before discharge, and the relationships between the caregiver and the patient. Before CTI, there was no statistically significant difference in the caregivers' sense of benefit-finding (including sense of benefit, family relationship, personal growth, social relationship and healthy behavior) and quality of life (including benefit-finding of care, stress of care, choice of care, support to care and money issue) between the two groups. While after CTI, the scores of each dimension of the caregivers' sense of benefit finding and quality of life in the intervention group were significantly higher than those in the control group (p < 0.05). Conclusions: The CTI can help improve the sense of benefit-finding and quality of life of caregivers for patients with ACI.
Background: Family support is internationally recognised as integral to palliative care. However, during end of life care discharge planning from hospital, families report a lack of opportunity to discuss their concerns or contribute their knowledge of the ill family member and consequently feel unheard and unsupported. To counter this experience, we co-produced the Family-Focused Support Conversation, a novel research-informed intervention, to guide discussion of family concerns about the meaning, implications and manageability of end of life caregiving following discharge. Objectives: To qualitatively evaluate the usability, accessibility and acceptability of the Family-Focused Support Conversation in hospital and factors which promote and inhibit implementation. Design: Participatory Learning and Action Research design, guided by Normalization Process Theory, a social implementation theory. Settings: Implementation was undertaken by 45 clinical co-researchers, specialist nurses (n=42) and occupational therapists (n=3), working in specialist palliative care teams in twelve hospitals (within seven NHS Trusts) across England, over a six-month period. Methods: During implementation clinical co-researchers collected reflective data about intervention delivery (n=110), participated in regular in-depth conversations of implementation with the research team (n=26 meeting records) and in a final evaluation meeting (n=11 meeting records). Data from family members who had received the intervention, comprised brief questionnaires (n=15) and in-depth semi-structured interviews (n=6). Data were qualitatively analysed, informed by Normalization Process Theory and Family Sense of Coherence Theory. Results: Clinical co-researchers found the intervention eminently usable and accessible. They reported a shift in family support from informing family members about patient healthcare needs, to family concerns such as how they made sense of the meaning of discharge, and how to provide family-orientated care. Family members found the intervention acceptable, they felt supported and able to make informed decisions about their role in providing end of life care. Implementation was positively influenced by coherence between the intervention and value placed on family care by clinical co-researchers. Once incorporated in their practice intervention delivery took no longer than usual practice and could be divided across consultations and collectively delivered with ward and discharge teams. Conclusions: The Family-Focused Support Conversation is usable, accessible and acceptable. It enhances family support by facilitating discussion of family concerns about end of life caregiving and results in family members making informed decisions about their role in end of life care following discharge.
Objectives: To explore the effect of care transitions intervention (CTI) on the sense of benefit-finding of caregivers for patients with acute cerebral infarction (ACI). Methods: Ninety caregivers for patients with ACI were divided into two groups according to the random number table method (n = 45 in each group). The control group was given regular health guidance, and the intervention group was given care transitions intervention on the basis of the guidance used in the control group. The changes in the sense of benefit-finding and quality of life between the two groups were compared before and after the intervention. Results: There was no statistically significant difference in caregivers between the two groups in gender, age, educational level, occupational status, gender and age of the patients, activities of daily living (ADL) scores before discharge, and the relationships between the caregiver and the patient. Before CTI, there was no statistically significant difference in the caregivers' sense of benefit-finding (including sense of benefit, family relationship, personal growth, social relationship and healthy behavior) and quality of life (including benefit-finding of care, stress of care, choice of care, support to care and money issue) between the two groups. While after CTI, the scores of each dimension of the caregivers' sense of benefit finding and quality of life in the intervention group were significantly higher than those in the control group (p < 0.05). Conclusions: The CTI can help improve the sense of benefit-finding and quality of life of caregivers for patients with ACI.
Background: The purpose of this study was to develop and administer surveys that assess patient and family caregiver experiences with care transitions and examine the psychometric properties of the surveys. The surveys were designed to ask about 1) the transitional care services that matter most to patients and their caregivers and 2) care outcomes, including the overall quality of transitional care they received, patient self-reported health, and caregiver effort/stress. Methods: Survey items were developed based on a review of the literature, existing surveys, focus groups, site visits, stakeholder and expert input, and patient and caregiver cognitive interviews. We administered mail surveys with telephone follow up to patients recently discharged from 43 U.S. hospitals. Patients identified the caregivers who helped them during their hospital stay (Time 1 caregiver) and when they were home (Time 2 caregiver). Time 1 and Time 2 caregivers were surveyed by telephone only. The psychometric properties of the survey items and outcome composite measures were examined for each of the three surveys. Items that performed poorly across multiple analyses, including those with low variability and/or a high missing data, were dropped except when they were conceptually important. Results: The analysis datasets included responses from 9282 patients, 1245 Time 1 caregivers and 1749 Time 2 caregivers. The construct validity of the three proposed outcome composite measures—Overall Quality of Transitional Care (patient and caregiver surveys), Patient Overall Health (patient survey) and Caregiver Effort/Stress (caregiver surveys) —was supported by acceptable exploratory factor analysis results and acceptable internal consistency reliability. Site-level reliability was acceptable for the two patient outcome composite measures, but was low for Caregiver Effort/Stress (< 0.70). In all surveys, the Overall Quality of Transitional Care outcome composite measure was significantly correlated with other outcome composite measures and most of the single-item measures. Conclusions: Overall, the final patient and caregiver surveys are psychometrically sound and can be used by health systems, hospitals, and researchers to assess the quality of care transitions and related outcomes. Results from these surveys can be used to improve care transitions, focusing on what matters most to patients and their family caregivers.
Objectives: Investigate the challenges experienced by survivors of critical illness and their caregivers across the transitions of care from intensive care to community, and the potential problem-solving strategies used to navigate these challenges. Methods: Qualitative design-data generation via interviews and data analysis via the framework analysis method. Patients and caregivers from three continents, identified through the Society of Critical Care Medicine's THRIVE international collaborative sites (follow-up clinics and peer support groups). Patients and caregivers following critical illness. Results: From 86 interviews (66 patients, 20 caregivers), we identified the following major themes: 1) Challenges for patients-interacting with the health system and gaps in care; managing others' expectations of illness and recovery. 2) Challenges for caregivers-health system shortfalls and inadequate communication; lack of support for caregivers. 3) Patient and caregiver-driven problem solving across the transitions of care-personal attributes, resources, and initiative; receiving support and helping others; and acceptance. Conclusions: Survivors and caregivers experienced a range of challenges across the transitions of care. There were distinct and contrasting themes related to the caregiver experience. Survivors and caregivers used comparable problem-solving strategies to navigate the challenges encountered across the transitions of care.
Background: Among potentially modifiable risk factors for delirium, transfers between wards, hospitals and other facilities have been mentioned with low evidence. TRADE (TRAnsport and DElirium in older people) was set up to investigate i) the impact of transfer and/or discharge on the onset of delirium in older adults and ii) feasibility and acceptance of a developed complex intervention targeting caregiver’s participation during and after hospital discharge or transfer on cognition and the onset of delirium in older adults. Methods: The study is designed according to the guidelines of the UK Medical Research Council (MRC) for development and evaluation of complex interventions and comprises two steps: development and feasibility/piloting. The development phase includes i) a multicenter observational prospective cohort study to assess delirium incidence and cognitive decline associated with transfer and discharge, ii) a systematic review of the literature, iii) stakeholder focus group interviews and iv) an expert workshop followed by a Delphi survey. Based on this information, a complex intervention to better and systematically involve family caregivers in discharge and transport was developed. The intervention will be tested in a pilot study using a stepped wedge design with a detailed process and health economic evaluation. The study is conducted at four acute care hospitals in southwest Germany. Primary endpoints are the delirium incidence and cognitive function. Secondary endpoints include prevalence of caregiver companionship, functional decline, cost and cost effectiveness, quality of discharge management and quality of admission management in admitting hospitals or nursing homes. Data will be collected prior to discharge as well as after 3, 7 and 90 days. Discussion: TRADE will help to evaluate transfer and discharge as a possible risk factor for delirium. In addition, TRADE evaluates the impact and modifiability of caregiver’s participation during patient’s transfer or discharge on delirium incidence and cognitive decline providing the foundation for a confirmatory implementation study. Trial registration: DRKS (Deutsches Register für klinische Studien) DRKS00017828.
Background: Adult children are often key carers of frail older parents providing care for a long period of time in different care contexts. However, research concerning adult children’s caregiving experiences, from providing home-based care to facing the death of a parent in a nursing home is sparse. Thus, the aim was to explore the transition from living at home to moving into and living in a nursing home and the time after death from the perspective of next of kin to an older person. Methods: A qualitative design using individual interviews with 15 adult children of older persons. The text was analysed using inductive content analysis. Results: One main category was identified, until death do us part. With three generic categories, living at home, living at a nursing home and time after death, and eight sub-categories. The results describe the transition when an older person lives at home and moves into and lives in a nursing home and the time after death from the perspective of next of kin. Conclusion: This study highlights many examples of tasks that adult children provide over a long period of time and in different care contexts since they felt that professional care was unable to provide safe and secure care for their older parents. It also highlights the importance for staff to recognize the support that next of kin provide. Furthermore, the study reveal that staff do not offer the relief that they are obligated to provide, to enable next of kin coping with this strenuous transition in life. First after the parent died, there was time for relief since the worrying and the doing of practical things for the parent had stopped. Trial registration: Current Controlled Trials NCT02708498.
Objectives: This study aimed to explore family caregivers experiences with tube feeding at home in Iran. Methods: This qualitative study was conducted with purposefully selected family caregivers who participated in an in-depth, semi-structured, face-To-face interview. Data analysis was performed through content analysis and rigor was investigated. Results: In total, 20 caregivers were interviewed. Two main categories were found in the interview data: abandoned training and lack of knowledge of nutrition . Participants felt abandoned and unsupported by health professionals. Participants also reported feeling that health professionals passed the training responsibility to other health professionals who did not give training. This resulted in participants feeling obligated to learn from their peers. Participants lacked knowledge about nutrition, as well as how to prepare home-made formula for feeding, the correct position for feeding and feeding times. Conclusion: Despite having a heavy and vital responsibility, participants felt that they had not been adequately trained and thus faced making errors, resulting in negative consequences for the patient and the family. Therefore, appropriate plans must be made to promote preparation for home care.
Background: Being a relative of a patient with oesophageal cancer can evoke strong emotions and uncertainty about the future. As a consequence of the treatment course for oesophageal cancer and an increase in outpatient treatment, relatives are becoming increasingly responsible for patients' physical and emotional care. There is a lack of research exploring relatives' experiences with illness, treatment and decision‐making. Aims and objectives: To explore relatives' experiences with illness, treatment of the patient and decision‐making in the context of oesophageal cancer. Design: A qualitative explorative design was chosen. Methods: We conducted two focus group interviews with 11 relatives. The analysis was based on Ricoeur's theory of interpretation. Results: Throughout illness and treatment, relatives faced the fear of loss, leading to distress and anxiety. Relatives were simultaneously taking responsibility and asserting a new role during treatment as they regarded treatment as a joint affair. Regarding decision‐making, relatives positioned themselves on the sidelines, awaiting the authority of the patients and healthcare professionals to give them space for participation. Conclusion: Relatives of patients with oesophageal cancer undergoing treatment are suppressing their anxiety and doubt about the future. As they are undertaking responsibility during treatment, they are claiming control in new areas, which leads to changing roles within the family. However, they do not feel empowered in decision‐making because they recognise patients' decision‐making authority. This study highlights the complexity of balancing patients' authority with acknowledgement of relatives' role as active collaborators.
Background: Older adults hospitalized following a fall often encounter preventable adverse events when transitioning from hospital to home. Discharge planning interventions developed to prevent these events do not all produce the expected effects to the same extent. This realist synthesis aimed to better understand when, where, for whom, why and how the components of these interventions produce positive outcomes. Methods: Nine indexed databases were searched to identify scientific papers and grey literature on discharge planning interventions for older adults (65+) hospitalized following a fall. Manual searches were also conducted. Documents were selected based on relevance and rigor. Two reviewers extracted and compiled data regarding intervention components, contextual factors, underlying mechanisms and positive outcomes. Preliminary theories were then formulated based on an iterative synthesis process. Results: Twenty-one documents were included in the synthesis. Four Intervention-Context-Mechanism-Outcome configurations were developed as preliminary theories, based on the following intervention components: 1) Increase two-way communication between healthcare providers and patients/caregivers using a family-centered approach; 2) Foster interprofessional communication within and across healthcare settings through both standardized and unofficial information exchange; 3) Provide patients/caregivers with individually tailored fall prevention education; and 4) Designate a coordinator to manage discharge planning. These components should be implemented from patient admission to return home and be supported at the organizational level (contexts) to trigger knowledge, understanding and trust of patients/caregivers, adjusted expectations, reduced family stress, and sustained engagement of families and professionals (mechanisms). These optimal conditions improve patient satisfaction, recovery, functional status and continuity of care, and reduce hospital readmissions and fall risk (outcomes). Conclusions: Since transitions are critical points with potential communication gaps, coordinated interventions are vital to support a safe return home for older adults hospitalized following a fall. Considering the organizational challenges, simple tools such as pictograms and drawings, combined with computer-based communication channels, may optimize discharge interventions based on frail patients’ needs, habits and values. Empirically testing our preliminary theories will help to develop effective interventions throughout the continuum of transitional care to enhance patients’ health and reduce the economic burden of avoidable care.
Aims: The aim of this study was to identify features of well‐performing residential aged care services (RACS) as experienced by family carers. Background: Family carers can have an integral role in residential aged care providing social support and are well‐placed to engage with staff and monitor care. Design: A qualitative descriptive design was used. Semi‐structured face‐to‐face and telephone interviews were conducted with family carers of current or past residents of Australian RACS between November 2018 and January 2019. Interview transcripts were analysed thematically. Results: Rather than reporting features of well‐performing RACS, participants shared stories of sub‐standard care, dysfunctional management and poor resident–staff–family interactions. An overarching theme emerged of 'having to be an advocate' for residents' needs, which covered four major categories: organisational accountability (including transparency and individualised care), good communication, connection and trust. Combined, these constitute what carers perceive are the necessary conditions for determining the features of a well‐performing RACS. Conclusion: Family carers need to feel confident and trust RACS staff when they hand over the role of carer for their relative with dementia. Relevance to clinical practice: This study provides insight into the needs and challenges of family carers when they relinquish the care of an older relative with dementia. Strategies to build confidence and trust between RACS and family carers are essential. Aged care nurses can play a pivotal role to support this through the development of open communication and relational connections with residents and their families.
The prevalence of long-term home noninvasive ventilation (NIV) has progressively increased over recent decades, supported by evidence of clinical effectiveness in a range of conditions leading to chronic respiratory failure. Simultaneous technological developments have improved the reliability, portability, and comfort of devices, making NIV increasingly accessible and acceptable as a treatment option. Clinicians are usually fully cognisant of the clinical outcomes they anticipate when recommending or initiating long-term NIV, for example prolonging life, preventing complications or healthcare utilisation, and/or improving symptoms. The evidence on key clinical outcomes is variable between conditions but is comprehensively evaluated in relevant clinical guidelines; traditionally less emphasis is placed on the potential practical and psychosocial implications of domiciliary NIV. However, the preferences, values and resources of individuals can have a significant impact on NIV usage and therefore may affect potential clinical benefit. This editorial discusses the healthcare-associated workload, also known as the treatment burden, of domiciliary NIV that may be shouldered by patients, their families and caregivers, justifying why the cost/benefit ratio must be carefully considered on an individual basis.
Background: To produce a conceptual and operational definition of transition, in the context of end-of-life care, as experienced by informal caregivers. Methods: The authors used Rodgers' (2000) concept analysis framework to examine this concept. Findings: Common themes emerged using Rodgers' (2000) inductive approach confirming transition for informal caregivers at the end of life as a process comprising the presence of trigger(s)/event(s), awareness, instability and engagement/learning while maintaining normality. There was also duration to this process that was often unknown and unpredictable. This concept analysis provides useful insight into understanding the complex dynamics of transition during this period. The primary antecedent of this concept, prompting transition, is a diagnosis of non-curative disease for the patient. In some cases, a gradual realisation rather than a formal diagnosis that the illness has progressed to a non-curative stage, can also be an antecedent. Transition during end-of-life-care for informal caregivers can be a highly emotional time for this vulnerable cohort. Effective transitioning can ensure a stability and quality end-of-life outcomes, such as a peaceful death, as the awareness and learning that it brings, prompts planning actions for terminal care. Conclusions: Through recognising the findings of this concept analysis, deeper insight may be gained to support the provision of care, by nurses, to informal caregivers, prompting them towards effective transitions that foster the best interest of the patient.
Objectives: Previous analyses of interventions targeting relationships between family caregivers of people with Alzheimer's disease and related dementias and residential long-term care (RLTC) staff showed modest associations with caregiver outcomes. This analysis aimed to better understand interpersonal and contextual factors that influence caregiver–staff relationships and identify targets for future interventions to improve these relationships. Methods: Using a parallel convergent mixed methods approach to analyze data from an ongoing counseling intervention trial, descriptive statistics characterized the sample of 85 caregivers and thematic analyses explored their experiences over 4 months. Results: The findings illustrated that communication, perceptions of care, and relationships with staff are valued by family caregivers following the transition of a relative with dementia to RLTC. Discussion: The findings deepen understanding of potential intervention targets and mechanisms. These results can inform future psychosocial and psychoeducational approaches that assist, validate, and empower family caregivers during the transition to RLTC.
Purpose: The number of people aged 80 and above is projected to triple over the next 30 years. Expanding public expenditure on long-term care services has made policies encouraged informal caregiving. Burden of care describes challenges connected to informal caregiving. Dependent patients report feelings of being a burden. Few studies have focused on both the experience of caregiver burden and recipients’ feelings of burden. This study explore the experiences of old patients and informal caregivers in the first 30 days after the patient’s discharge. Method: A phenomenological approach was used to explore the subjective experiences of the participants. Semi-structured individual interviews were analysed thematically. Results: The reults reflect imbalance regarding care needs relative to time, social roles, physical and emotional states, and formal care resources. Four themes emerged from the interviews: 1) Bridging the gap, 2) Family is family, 3) Never enough, and 4) Stress and distress. Conclusions: The participants face strains within their roles. The care situation has potential to be burdensome. To secure healthcare quality for old patients, the informal carer’s role needs to be recognized. Informal care based on altruism and reciprocity seems to be positive, whereas informal care based on family norms might have a negative impact.
Objective: To increase our knowledge of the patient variables related to the overburden of the caregivers of patients with acute exacerbations of chronic obstructive pulmonary disease (AECOPDs). Methodology: This was a cross-sectional study of patients with severe COPD who have informal caregivers. We performed a multivariate analysis of sociodemographic (economic situation, care, dependence, social risk, and use of social services) and clinical (degree of dyspnea, previous hospitalizations, disease impact, pulmonary function, and comorbidity) factors and related these to the burden of informal caregivers, as evaluated using the Zarit scale. Results: The study included 91 patients, age 72.6±8.7 years and 80 were male (89.7%); the mean modified Medical Research Council dyspnea scale (mMRC) score was 2.5±0.8; mean FEV1 was 39.5 ± 13.2%; and 70 patients (76.9%) were dependent for basic activities. Of the informal caregivers, 90 (90.9%) were women, 49 (49.4%) were partners or spouses, and 29 (29.6%) were daughters. The mean Zarit questionnaire score was 51.4±14.2, with 63 of carers (69.2%) perceiving some overburden, and 34 (37.4%) describing the overburden as mild–moderate. The variables related to informal caregiver overburden in the multivariate study were the previous use of social resources [OR = 8.1 (95% CI = 1.03–69.9); p = 0.04], degree of mMRC dyspnea 3–4 [OR =4.7 (95% CI = 1.7–13.2); p = 0.003], and two or more admissions for AEPOC in the previous year [OR = 4.5 (95% CI = 1.7–13.2); p = 0.003]. Of the informal caregivers of patients who had presented two or more of these variables, 92.3% perceived an overburden. Conclusion: The variables associated with overburden are easily accessible in patient medical records, or can be obtained by interviewing patients or their relatives. This informa-tion would allow to detect and assess the overburden of informal caregivers to provide an early warning of this problem. © 2021 Fernández-García et al.
Background: Patients with chronic obstructive pulmonary disease (COPD) and congestive heart failure (CHF) are at high-risk of readmission after hospital discharge. There is conflicting evidence however on whether timely follow-up with a primary care provider reduces that risk. The objective of this study is to understand the perspectives of patients with COPD and CHF, and their caregivers, on the role of primary care provider follow-up after hospital discharge. Methods: A qualitative study design with semi-structured interviews was conducted among patients or their family caregivers admitted with COPD or CHF who were enrolled in a randomized controlled study at three acute care hospitals in Ontario, Canada. Participants were interviewed between December 2017 to January 2019, the majority discharged from hospital at least 30 days prior to their interview. Interviews were analyzed independently by three authors using a deductive directed content analysis, with the fourth author cross-comparing themes. Results: Interviews with 16 participants (eight patients and eight caregivers) revealed four main themes. First, participants valued visiting their primary care provider after discharge to build upon their longitudinal relationship. Second, primary care providers played a key role in coordinating care. Third, there were mixed views on the ideal time for follow-up, with many participants expressing a desire to delay follow-up to stabilize following their acute hospitalization. Fourth, the link between the post-discharge visit and preventing hospital readmissions was unclear to participants, who often self-triaged based on their symptoms when deciding on the need for emergency care. Conclusions: Patients and caregivers valued in-person follow-up with their primary care provider following discharge from hospital because of the trust established through pre-existing longitudinal relationships. Our results suggest policy makers should focus on improving rates of primary care provider attachment and systems supporting informational continuity.
Objectives: To understand the awareness of transitional care in patients with JIA and their families. Methods: A questionnaire survey on transitional care was conducted among patients with JIA during their transitional period who were attending the pediatric rheumatology of our university and the members of parents' association of JIA (the Asunaro-kai). Results: 57.1% of patients and 35.9% of their parents did not know the word 'transitional care'. Approximately half of them did not have the opportunity to discuss transition or transfer to adult rheumatology. 61.2% of patients and 78.6% of their parents were worried about transition or transfer to adult rheumatology, and their biggest concern was about building trust with a new doctor. Approximately half of them wished to transfer to adult rheumatology after establishing a period of consultation with both pediatric and adult rheumatology. With regard to the timing of transfer, the majority of them wanted to consult with their doctors regardless of their age. The information they wanted to know was the prognosis of the disease itself, the medical system after adulthood, and data on pregnancy and childbirth. Conclusions: The development of transitional care requires that pediatricians and adult rheumatologists work together to listen to the needs of patients and their families.
Background and Purpose: The need for high-quality long-term healthcare services is increasing across the globe as the population ages. Strategies for improving transitional care from hospital to home are needed. This study aimed to explore the perspectives of patients aged 65 years and over and their family caregivers transitioning from hospital to home in an urban area of Turkey. Methods: Thematic analysis of in-depth semi-structured interviews was conducted with older patients (n = 14), with at least one chronic disease and admitted to the hospital for a minimum of 3 days, and family caregivers (n = 11) who voluntarily participated. Results: Main themes were "confused feelings of safety and stress"; "worried about being left alone"; and "disrupted healthcare journey." The proactive rehabilitation model was used to elaborate on the study findings and interpret the perspectives and experiences of older patients and their family caregivers, which can be used for improving the quality of care after discharge from hospital. Implications for Practice: A high-quality transitional care program requires taking care of the feeling of safety in older patients and their family caregivers by the multidisciplinary team and their enhanced involvement in care initiatives after hospital discharge.
Background: For cancer patients and their family, an important factor that determines the choice to die at home is the caregivers' feeling of security when caring for the patient at home. Support to caregivers from healthcare professionals is important for the feeling of security. In rural areas, long distances and variable infrastructure may influence on access to healthcare services. This study explored factors that determined the security of caregivers of patients with advanced cancer who cared for the patients at home at the end of life in the rural region of Sogn og Fjordane in Norway, and what factors that facilitated home death. Methods: A qualitative study using semi-structured in-depth interviews with bereaved with experience from caring for cancer patients at home at the end of life was performed. Meaning units were extracted from the transcribed interviews and divided into categories and subcategories using Kvale and Brinkmann's qualitative method for analysis. Results: Ten bereaved caregivers from nine families where recruited. Five had lived together with the deceased. Three main categories of factors contributing to security emerged from the analysis: "Personal factors", "Healthcare professionals" and "Organization" of healthcare. Healthcare professionals and the organization of healthcare services contributed most to the feeling of security. Conclusion: Good competence in palliative care among healthcare professionals caring for patients with advanced cancer at home and well- organized palliative care services with defined responsibilities provided security to caregivers caring for advanced cancer patients at home in Sogn og Fjordane.
Objectives: to report on acute hospital care experiences for persons with dementia and family/carers in a pilot study (PiP) of person-centred care compared with usual care. Methods: participants were recruited from one acute aged care ward and one mixed medical/surgical ward. One-on-one interviews occurred soon after discharge using a semi-structured interview guide framed by person-centred principles whereby the person is: V—valued; I—treated as an individual; P—perceived as having a unique identity; and S—supported socially and psychologically. Data were analysed deductively with reference to these a priori principles. Results: 11 consented persons with dementia and 36 family/carers participated. A total of eight core VIPS concepts were derived from the data. While many occasions of person-centred care occurred, there was variability in staff expertise, interest and aptitude for dementia care work. Neglect of person-centred principles more frequently occurred for the usual care group, where staff failed to place the person and their family/carer at the centre of service. Conclusions: person-centred services for persons with dementia requires that hospital executive equip staff with the relevant knowledge, skills and support to adhere to person-centred care guidelines. Hospitals must address workplace cultures and procedures that favour organisational systems over person-centred services.
Background: The patients' companions can help improve transitional care as an important missing link, but their role is not clear. The aim of this study was to explore the role of the patients' companion in the transitional care from the open heart surgery intensive care unit (OH-ICU) to the cardiac surgery ward. Methods: This was a qualitative descriptive study using conventional content analysis that was conducted from September 2019 to February 2020 in Tehran, Iran. Purposeful sampling method with maximum variation was performed among the patients eligible for transfer to the cardiac surgery ward, their companions, nurses, and physicians in charge of transferring from the OH-ICU to the ward. 27 in-depth and semi-structured interviews were conducted with 25 participants, and data were analyzed using the Granheim and Lundman method. The data were managed using the MAXQDA software (version 10.0). Results: Based on our analysis, the theme "Dual role of the patients' companion" and its two categories, "Companion as a facilitator" and "Companion as an inhibitor", were extracted. Emotional support, satisfaction of basic needs, care arm, alarm bell, and communication bridge were the sub-categories of the first category, and Interfering with care and creation of tension were those of the second category. Conclusion: We concluded that the patients' companions can play an important role in transitional care, especially as emotional support and system assistants due to the structure of the health care system and Iranian cultural context. Therefore, it is suggested that the patients' companion should be considered as a member of the transition team and accompany them in this process by informing and supporting them.
Background: To enhance prevention and treatment of malnutrition in older adults before, during and after hospitalization, deeper understanding of older adults’ and informal caregivers’ perspective on nutritional care is important. Methods: One-time in-depth interviews were conducted with 15 older adults who had been discharged from hospital, and seven informal caregivers. We explored their experiences and needs regarding nutritional care provided in the periods before, during and after hospitalization. Findings: Five themes emerged from the data: (1) dietary intake, (2) food service during hospitalization, (3) nutrition-related activities, (4) whose job it is to give nutritional care, and (5) competing care priorities. Further, several opinions about nutritional issues were identified. Older adults and informal caregivers did not always experience optimal nutritional care. When discussing nutritional care, they mainly focused on the in-hospital period. When providing nutritional care and developing guidelines, older adults’ and informal caregivers’ perspective on nutritional care should be incorporated. Here, the periods before, during and after hospitalization should be taken into account equally.
Objective: To examine live hospice discharge prevalence and experiences of families and hospice staff. Hospice eligibility is based on a cancer model where decline and death are predicable. Decline is less predictable for diagnoses such as dementia, frequently resulting in involuntary live hospice discharge. Methods: A mixed-method integration of hospice 2013-17 admission/discharge data, 5 family interviews, hospice discipline-specific focus groups (3 aides, 2 nurses, 1 administrator interview) and a discipline-combined focus group (all 6 staff; each staff participant engaged in two data collection experiences). Results: 5648 hospice admissions occurred between 2013-17; 795 patients experienced live discharge. The most prevalent admitting diagnosis was cancer, the most prevalent live discharge diagnosis was dementia. Family caregiver themes were Attitude and experience with hospice, Discharge experience, and Continued need/desire for hospice following discharge. Staff themes were Discharge circumstances, Regulatory guidelines, and Changing practice to meet regulatory guidelines. Conclusion: Involuntary live hospice discharge precludes patient-centered care due to policy constraints, especially for those with noncancer diagnoses. Families and staff noted the paradox of beneficial hospice care, yet this care resulted in ineligibility for continued hospice services. Practice Implications: Transparent, patient-family-staff communication (including CNAs) facilitates hospice live discharge planning. Hospice service eligibility policy changes are needed.
Background: Sarcomas are a group of rare and aggressive cancers, which develop in bones and connective tissue throughout the body. Sarcomas account for only 1–2% of all cancers worldwide; however, mortality rates for sarcoma are high with approximately two in four sarcoma patients dying following a diagnosis. Delays in diagnosis, poor management of symptoms, patients’ high symptom loads and high carer burden are all associated with carer distress, which may lead to complications after bereavement. The experience of having a family member referred for palliative care is also distressing for carers, with the realisation that their family member is dying. This study aimed to explore the experiences of bereaved family carers of people diagnosed with sarcoma. Methods: A qualitative descriptive design using a social constructionist framework was adopted. Interviews were conducted with sixteen participants, and thematic analysis was used to identify patterns in the data. Findings: Four overarching themes emerged: beginning the journey; moving through treatment; transitioning to palliative care; and experiencing bereavement. The narratives were coherent and potent, and people reflected on their journeys. Conclusions: Interventions and supports for bereaved carers could include opportunities for counselling to support reflections, supports for developing a narrative such as writing therapy, and preparation for the death of the family member.
Background: Population ageing in China calls for evidence-based solutions, especially in terms of fulfilling long-term care needs among frail older adults. Respite services are identified as effective resources for alleviating care-giver burden and promoting the wellbeing of both older adults and their family care-givers. However, respite care is often under-used in China. Objectives: This research aimed to examine factors associated with intention to use respite services among informal care-givers in Shanghai, mainland China. Methods: This study was part of the Longitudinal Study on Family Caregivers for Frail Older Adults in Shanghai. Pairs of older adults and their care-givers (N = 583) who successfully completed the 2013 and 2016 waves were included in the data analysis. Two logistic regression models were conducted, one with time-invariant and one with time-variant factors. Results: The model with time-variant factors had greater explanatory power than the original Andersen model with time-invariant factors influencing intention to use respite services among care-givers. Care-givers had higher odds of intending to use respite services if they had higher care-giving burden, were caring elderly people who experienced care-giver transitions, or were caring for elderly people with increased function of ambulation or decreased function of feeding. Conclusion: The findings imply that change in functional health was a significant determinant of intention to use respite care. Relevant policy and service implications will be discussed.
Aim: To understand how family caregivers of older adults hospitalized for orthopaedic surgery are integrated by nurses in delirium prevention care. Design: Multiple case study. Methods: The sample consisted of eight cases. Each case comprised an older adult, a family caregiver, and a nurse. Data were collected from September 2017 ‐ April 2018 through various instruments, including semi‐structured interviews and family caregiver logs. Within‐ and across‐case analyses were conducted, based on the model of The Care Partner Engagement developed by Hill, Yevchak, Gilmore‐Bykovskyi, & Kolanowski (Geriatric Nursing, 35, 2014, 272). Results: Two themes emerged: (a) family caregivers were engaged in caring for the older adults during their hospital stay, though they had differences in terms of views and needs; and (b) family caregivers communicated with nurses but nurses did not recognize their role and did not integrate them much in care. Conclusion: The presence and availability of family caregivers, their sense of responsibility towards the hospitalized older adults, and their positive effects on them suggest that family caregivers could be integrated more systematically in a care partnership with nurses. Poor integration of family caregivers in delirium prevention care shows that nurse delirium prevention competencies and their relational skills for communicating effectively with family caregivers need to be developed further. Impact: Integrating family caregivers in delirium prevention care for older adults is a challenge for nurses. Family caregivers are engaged during the hospitalization of older adults, though differences and problems exist between the two groups. While there is communication between patients, family caregivers, and nurses, nurses do not recognize the role of family caregivers and hardly integrated them in the delirium prevention care of hospitalized older adults. Nurses must adopt a patient‐ and family‐centred approach. Care and training facilities must make resources available to implement this approach in nursing practice.
Background: The institutionalization of a patient with Alzheimer's disease or other dementia (ADOD) is the last resort for the latter's family and/or caregivers. We hypothesized that the degree of kinship between the patient and his/her caregiver would influence the likelihood of institutionalization. Objective: To assess the association between institutionalization of patients with ADOD and the degree of kinship with the family caregiver. Methods: A cross‐sectional study of patients with ADOD aged 75 or over attending a memory center in France for the first time between 2011 and 2014, as recorded in the French National Alzheimer Database. Multivariable logistic regression was used to assess factors associated with institutionalization after adjustment for age, sex, the Mini‐Mental State Examination score, educational level, and type of dementia. Results: A total of 52,874 patients were included. The primary caregiver was most often a child (54.8%) or the spouse (36.7%). Compared with the "spouse" reference category, all the other caregiver categories were associated with a significantly greater likelihood of institutionalization; the odds ratio [95% confidence interval] was 4.68 [3.67–5.92] when the carer was a grandchild, 5.48 [4.93–6.09] for a child, 4.93 [4.11–5.91] for a daughter‐/son‐in‐law, 8.76 [7.15–10.70] for a sibling, and 8.93 [7.48–10.65] for a niece/nephew. Conclusion: The likelihood of institutionalization of older patients with ADOD varied with the degree of kinship. Compared with the "spouse" reference category, the likelihood was higher for all other types of caregivers but was especially high when the caregiver was not a direct descendant of the patient.
Background: thousands of patients are admitted to intensive care units annually, which is a stressful event. Many of these patients still require particular care after discharge. In many countries, families play an essential role in taking care of these patients after discharge. Objectives: This study aimed to determine the informational needs of families of patients discharged from Intensive Care Units (ICU), Kerman, southeast Iran. Methods: this study had a cross-sectional design. Families were selected using the information extracted from patients' medical records. One hundred forty family members of the ICU discharged patients participated in the survey using convenience sampling. Data collection tools were a validated researcher-made questionnaire about informational needs and a demographic characteristics form. Results: the mean score of family informational needs was 31.18 ± 3.97 out of 40. Most families required a high level of information in all dimensions. However, the maximum need was associated with self-care subscale (4.89 out of 5), and the minimum need was associated with defecation (3.13 out of 5). Conclusion: the families of patients discharged from intensive care units required much information about different areas of care particularly self-care. Health care providers, especially nurses, should be aware of the informational needs of the ICU patients' families post-discharge to provide better care.
Objectives: The aim of this study was to describe the psychological and physical health needs of informal caregivers in a rehabilitation hospital and explore differences related to informal caregiver and care recipient characteristics. Readiness to engage in health promotion and perspectives on mindfulness meditation were assessed. Methods: Informal caregivers (N = 33) to patients receiving inpatient or outpatient treatment completed the Multidimensional Health Profile screening tools. Readiness to change was assessed using the readiness ruler approach. Results: Almost half of participants (45.5%) had a chronic illness and 18.2% reported that it interferes with daily functioning. Low Positive Health Habits were reported by 43% of participants, and Negative Health Habits were reported by 25%. A subgroup (15%–20%) reported both physical and mental health concerns. A majority of participants indicated it was both very important for them to improve their physical and mental health and felt very confident they could do so. Receptivity to mindfulness meditation was high, with 72.7% reporting an interest. Comprehensive screening and counseling interventions to address the physical and mental health of informal caregivers in physical rehabilitation hospital settings are needed, and information gained from screening could be addressed in interventions delivered by systems-oriented rehabilitation counselors. Conclusion: A mindfulness meditation intervention may be a useful strategy for promoting well-being in this population.
Background: Relatives of stroke patients should be an integral part of the continuum of rehabilitation services. Objectives: The objective was to describe their perception of the quality of the services they received in the context of early supported discharged (ESD), in- and out-patient rehabilitation services. Methods: Descriptive study using the Quality of Services Questionnaire for Relatives post-stroke (QSQR) completed online by relatives after the patient's discharge. It consists of 22 statements with respect to three subscales: 1) the training/instructions, 2) the information provision and 3) the organizational process of the service offer. Space is allowed for free comments and two open-ended questions. Quantitative data were analyzed descriptively, and we used a content analysis for qualitative data. Results: One-third (30/90; 33.3%) of the sample are composed of relatives aged 55 and under, with a majority (81%) of women and 51.3% of spouses. The training/instructions and information provision were perceived positively with a mean % agreement at 85.0 ± 29.6 and 84.8 ± 22.4, respectively. The mean % agreement was 91.4 ± 17.8 for the organizational process subscale. A significantly higher score (p = 0,03; Kruskal Wallis test) was found for out-patient services (n = 20) as compared to ESD (n = 29) or in-patient rehabilitation (n = 41). Qualitatively, a lack of involvement of relatives was mentioned as well as a lack of personalized information about stroke and its consequences and provision of resources available. However, communication between professionals, their availability, and their professionalism were appreciated. Conclusions: Despite quantitative high scores, qualitative data allowed the identification of concrete avenues for improvement to truly and systematically include relatives in stroke rehabilitation.
Background: Although death is not an uncommon outcome for cancer patients who are admitted to the hospital, there are few inpatient interventions in oncology designed to create a personalized, compassionate end-of-life (EOL) experience for patients and families. The 3 Wishes Project (3WP) is a program where clinicians implement final wishes for dying patients. 3WP has been shown to be effective at improving the EOL experience for family members of patients who die in the intensive care unit but has not been evaluated on an oncology specific ward. Research Objectives: To implement the 3WP on an oncology ward and evaluate its influence on family members' experience of their loved one's EOL. Methods: When a patient's probability of dying is greater than 95% or if the patient will be transitioned to hospice on this oncology ward, patients and families are invited to participate in the 3WP. Wishes are elicited, implemented, documented, and categorized. Semi-structured qualitative interviews were conducted with eleven family members of cancer patients who participated in the 3WP. Interviews were digitally recorded, transcribed, and analyzed using content analysis. Results: During a course of 20 months, 144 wishes were implemented for 42 cancer patients and their families, at an average cost of $56. The majority (63%) of the 144 wishes were to humanize the environment. The overarching theme identified through the analysis of transcripts from the family interviews was that 3WP facilitates three transitions at the EOL: the transition from multiple hospital admissions to the final admission, the transition of the family member from a primary caregiver role to a family member role, and the transition from a focus on the present to a focus on legacy. Conclusion: 3WP is an intervention that can be implemented on the oncology ward to help facilitate key transitions that improve the EOL experience for families of dying cancer patients.
Introduction: Belarus is undergoing legislative shifts towards community-based mental health care. Responding effectively to support this process requires an understanding of the experiences and challenges facing families caring for a relative affected by mental illness. Objectives: To identify how caring for a person with severe mental illness impacts on family carers, and what carers identify as their support needs. Methods: Semi-structured interviews were undertaken with 17 caregivers of people affected by severe mental illness (diagnosis of F06.8, F20, F25, F7, and/or F 84) in Belarus between March - June 2019. Results: Care-giving for a family member was usually undertaken on a full time basis with no option for respite. Whilst caring did, in cases, strengthen family solidarity, it also resulted in intensive stress and burnout, financial pressures, and high levels of family tension, exacerbated when the person living with mental illness was perceived as a potential safety risk. High levels of societal stigma meant that care-givers commonly felt unable to discuss their circumstances, travel in public spaces, or participate in community activities. Stigma also deterred carers from seeking professional support. Priorities for support amongst carers included better information, public awareness raising and sensitization, advocacy to support patient integration into social and economic life, peer support and respite for family carers, and an increase in mental health specialists. Conclusions: Caregiving affected family carers on multiple levels with predominantly negative consequences. Priorities identified by carers need to be considered and acted upon if community-based care is to become an effective option.
Background: As the prevalence of paediatric dysphagia increases, the need for long‐term non‐oral feeding has also increased. Despite these developments, little is known about caregiver experiences of transitioning a child onto long‐term non‐oral feeds, and the factors which influence the process of decision‐making and the provision of consent to do so. This paper aims to explore these factors. Methods: Semi‐structured interviews were conducted with nine participants recruited from the multidisciplinary out‐patient non‐oral feeding clinic at a hospital. Interviews explored caregiver experiences of decision‐making and the process of providing consent when transitioning their child to non‐oral feeds, as well as the support structures available to the caregivers. Interviews were audio recorded and transcribed, then analyzed using thematic analysis (Braun & Clarke, 2013) and content analysis (Neuendorf, 2016). Results: Challenges to care and quality of life, access to information and culturally relevant counselling, and the involvement of family members and significant others emerged as prominent themes. Findings suggest that quality of life was the most common motivating factor for transitioning a child to non‐oral feeding methods. Several participants suggested that support and information sharing via digital platforms were both useful and effective. Implications: The findings highlight caregivers' needs for improved access to information and social support. The findings hold implications for training of healthcare providers working in similar contexts and for models of service delivery which ensure that family‐centred intervention can be delivered in culturally and contextually relevant ways. With widespread access to smartphones, counselling should include digital messaging as a way of providing support and information sharing. Future research should focus on the complexities of counselling and the process of informed consent in settings impacted by diverse cultural, contextual and linguistic barriers, as well as the potential value of mobile health (mhealth) in ensuring improved health outcomes.
Objectives: To evaluate whether the prevalence of health problems in cohabiting partners of people with dementia differs between the year before and the year after 3 transitions: the diagnosis of dementia, institutionalization, and the death of the person with dementia. Methods: Individuals with dementia and their partners were identified on the basis of data in the electronic health records (EHRs) of 451 Dutch general practices. EHRs were also the data source on their health problems, which were linked to the Dutch population registry and health administration data with demographic characteristics, date of institutionalization, and date of death. Differences in the prevalence of 16 groups of health problems and of specific health problems in partners during the year before and the year after the 3 transitions were examined using a generalized estimating equation. Results: About 1,110 partners of persons with dementia were identified. Problems related to the illness and/or loss of the person with dementia were significantly more prevalent in the year after the dementia diagnosis (32% vs. 17%) and in the year after the death of the person with dementia (59% vs. 41%) than in the years before. Unspecified health problems were more prevalent in the year after the diagnosis than in the year before (30% vs. 22%). After institutionalization, an increase was found in digestive problems and urological problems (30% vs. 18% and 24% vs. 17%). Conclusions: Transitions during the dementia care trajectory, namely, the diagnosis, institutionalization, and death of the person with dementia, significantly affect the cohabiting partner's health.
Background: Persons with moderate-to-severe traumatic brain injury (TBI) face issues with health, wellness, and safety that affect their ability to independently manage their care, even for individuals who are ≥75% independent in activities of daily living. These issues often lead to increased family involvement in managing the person's condition after discharge home. Methods: We explored health, wellness, and safety concerns after discharge home from inpatient rehabilitation from the perspectives of persons with TBI who are ≥75% independent in activities of daily living and their family caregivers. We interviewed 27 persons with TBI and family caregivers and used conventional content analysis to analyse the data. Seven themes related to health, wellness, and safety encompassed participants' experience. Findings: Health themes included: (1) attempting to manage medications and (2) navigating mental health difficulties. Wellness themes included: (1) working to stay physically active, (2) dealing with sleep and sleeplessness, and (3) adjusting to changing social relationships. Safety themes were: (1) addressing mobility challenges and (2) compensating for complications with cognitive functioning. Findings can guide the development of tools, supports, and resources to promote health, wellness, and safety of persons with TBI as they recover after discharge home. Findings on numerous concerns related to health, wellness, and safety suggest the need for implementation or development and testing of tools, supports, and resources to promote health, wellness, and safety of persons with traumatic brain injury as they recover after discharge home. Conclusions: Our findings can be used to educate healthcare providers and increase awareness of the nuanced challenges patients and families face after discharge home. Findings can also be used by providers to educate patients and families on realistic expectations for life after discharge.
Background: Family caregivers are often perceived as inexperienced family members assuming caregiving duties. However, health care professionals may also find themselves in an informal caregiving role as older adult relatives or friends are hospitalized and experience intra-hospital transitions. The purpose of the current study was to describe the experiences of health care professionals assuming the role of informal caregiver during intra-hospital transitions. Methods: As part of a larger study, a separate analysis of six semi-structured interviews from family caregivers with health care backgrounds was considered. Findings: Health care professionals as family caregivers (HCP-FCs) reported they sought inclusion in the care provided, they had unique insider perspectives, and experienced role struggle between health care professional and new informal caregiver. Moreover, HCP-FCs reported increased role struggle during interactions with colleagues and fellow health care professionals. Conclusions: Understanding of the role of HCP-FCs during transitions in care is necessary to develop interventions supportive of patient- and family-centered care.
Context: Hospital-to-home transitions, particularly at the end of life, can be challenging for patients and their family caregivers. Therefore, there is a need to better understand gaps in expectations and experiences of these transitions. Theory can inform the creation of an intervention aimed at improving the hospital-to-home transition. Objectives: 1) Explore patients' and caregivers' expectations and subsequent experiences of the hospital-to-home transition while receiving palliative care, and 2) build a substantive grounded theory to enhance the understanding of hospital-to-home transitions from the patient and caregiver perspective. Methods: Longitudinal, prospective qualitative study with semistructured interviews at hospital discharge and three to four weeks after discharge home. We recruited adults receiving inpatient palliative care who were being discharged to home-based palliative care, and their family caregivers from two academic health centers in Toronto, Canada. Thirty-nine participants: 18 patients, 7 caregivers, and 7 patient-caregiver dyads participated. We conducted 52 interviews. We conducted a grounded theory qualitative study. Results: Through examining the expectations and subsequent experiences of the transition, and exploring the gaps between them, we identified various transitions needs: health and well-being needs, and practical needs (i.e., transportation, setting up the home for care, care providers in the home). Several enablers and disablers modified the likelihood of needs being met (e.g., caregiver role, education on symptom management, uncertainty, financial resources). Conclusion: Our substantive grounded theory highlighted potentially measurable constructs that can be further tested. Future interventions should target the enablers/disablers to ensure health and well-being and practical needs are met in the transition.
Background: The transition of tracheostomy patients to the home poses many challenges for both the patient and the family. Identifying and understanding the experiences of family caregivers pave the road for discovering and meeting care needs. This study has been aimed to explain the experiences of family caregivers of patients with a tracheostomy about patient care at home. Materials and Methods: This qualitative study was conducted using a conventional content analysis approach from September 2018 to January 2019. Participants included nine family caregivers and one professional caregiver who were selected through purposive sampling method. The in-depth interviews were conducted at home or in health centers using field notes. Data were recorded manually and analyzed using the five-step method proposed by Granehim and Lundman. Results: The data led to the emergence of 1591 initial codes, 23 subcategories, and 6 categories. Categories include the need for training, the need for receiving care support, care challenges, care burden, gaining experience, hope, and inner satisfaction. Conclusions: In this study, the family caregivers faced with lots of challenges in caring patients with tracheostomy so that they were in needs of training and support from professionals. Although they got skillful in care and endure burden, they were so hopeful and satisfied with their attempts. Hence, there is a need for official nongovernmental organizations with the aim of maintaining care and protecting their families.
Background: Family caregivers may experience difficulty maintaining meaningful contact with a relative with advanced dementia. Nevertheless, some family caregivers prefer to remain involved in the care of their relative after admission to a nursing home. Family involvement in the care is important but little is known about how this works in practice and what exactly is needed to improve it. Objective: To examine experiences of family caregivers, staff and volunteers with family caregiver participation in the Namaste Care Family program, a psychosocial intervention to increase quality of life for people with advanced dementia that may help family caregivers to connect with their relative. Further, we aimed to examine facilitators of and barriers to family participation. Methods: exploratory qualitative design using semi-structured interviews. Ten nursing homes in the Netherlands. Ten family caregivers, 31 staff members and 2 volunteers who participated in the Namaste Care Family Program. Qualitative interview study using thematic analysis. Interviews were held with family caregivers, staff members, and volunteers about their experiences with the Namaste Care Family program. Results: In general, family caregivers experienced their involvement in the Namaste Care Family program as positive, particularly the meaningful connections with their relative. However, putting family involvement into practice was challenging. We identified three themes covering facilitators for and barriers to participation: (1) Preferences of family caregivers for activities with their relative (Activities): practical activities matching one's own interests were seen as facilitating, while perceived lack of knowledge and reluctance to engage with other residents were barriers. (2) Communication between family caregivers, staff and volunteers (Communication): providing clear information about the program to family caregivers facilitated their involvement. Feeling insecure inhibited family involvement. (3) Personal context of family caregivers (Personal circumstances): feeling fulfillment and being appreciated facilitated involvement. Older age, having a family of their own, a job and complex family relations were barriers to family caregiver involvement. Conclusions: To optimize family involvement, it is important to adopt a family-centered approach and provide training and guidance. Making a personal, comprehensive plan with family caregivers and offering them guidance can help them overcome their uncertainty and remove barriers to being more involved with a care program aiming to improve the quality of life of their relative. Also recommended is training for staff to improve communication with family caregivers. The Namaste study is registered with the Netherlands Trial Register (NTR5692).
Objective: The transition from active cancer treatment to survivorship represents a period of uncertainty for youth and their families, but factors associated with adaptation during this period are understudied. We evaluated associations among cancer and treatment‐related variables, family factors (family functioning, caregiver health‐related quality of life [HRQL], and caregiver distress), and patient HRQL after treatment completion. We assessed the indirect effects of neurocognitive difficulties on youth HRQL through family factors. Methods: One hundred fifty‐four caregivers (of patients’ ages 0–18 years) and 52 youth (ages 7–18 years) completed questionnaires assessing family factors, neurocognitive difficulties, and HRQL for patients within 6 months following treatment completion. Electronic health records were reviewed for cancer and treatment‐related information. Bootstrapping analyses assessed whether neurocognitive function had indirect effects on HRQL through family factors. Results: Family factors were associated with self‐ and caregiver reports of children's HRQL. Controlling for demographic, cancer, and treatment covariates, caregiver reports of their child's neurocognitive difficulties had an indirect effect on their reports of child physical HRQL through family functioning. Caregiver reports of their child's neurocognitive difficulties indirectly related to caregiver reports of child psychosocial HRQL through family functioning and caregiver HRQL. Indirect effects for self‐reported neurocognitive difficulties and HRQL were not supported. Conclusions: Findings highlight the need for routine psychosocial screening for youth and caregiver reports of family adjustment and HRQL during the transition off treatment. Providers are encouraged to offer interventions matched to specific needs for families at risk for poor family functioning to improve patient outcomes as they transition off treatment.
Background: Dementia and hip fracture are both associated with substantial disability and mortality. However, few studies have explored the effects of intervention programs on post-operative recovery of older persons with hip fracture and cognitive impairment. To examine the effects of a family-centered care model for older persons with hip fracture and cognitive impairment and their family caregivers. Methods: Single-blinded clinical trial. A 3000-bed medical center in Taiwan. Older persons hip fracture and cognitive impairment (N = 152); 76 in the intervention group, and 76 in the usual-care control group. A family-centered care model consisting of geriatric assessment, discharge planning, in-home rehabilitation, and family caregiver-training for dementia care. Outcomes were assessed 1-, 3-, 6- and 12-months following hospital discharge for older persons with hip fracture and cognitive impairment. Assessed outcomes were self-care ability (performance of activities of daily living and instrumental activities of daily living), nutritional status, self-rated health, health-related quality of life and self-efficacy, and competence of the family caregivers. Results: Relative to patients who received usual care, those who received the family-centered care intervention had a greater rate of improvement in self-rated health (β = 1.68, p <.05) and nutritional status (β = 0.23, p <.05), especially during the first 6 months following hospital discharge. Relative to family caregivers who received usual care, those who received family-centered care had a higher level of competence (β = 7.97, p <.01), a greater rate of improvement in competence (β = 0.57, p <.01), and a greater rate of improvement in self-efficacy (β = 0.74, p <.05) 3 months following hospital discharge. Conclusions: A family-centered care model enhanced family caregivers' self-efficacy and competence but did not improve the physical recovery of the participants with hip fracture and dementia. We suggest adding an educational component to include geriatric assessment, discharge planning, in-home rehabilitation, and family caregiver-training for dementia care and assessing family caregiver outcomes in interventions for older persons with hip fracture and cognitive impairment. Trial registration: Registered with www.clinicaltrials.gov (NCT03894709)
Background: In low-income settings with limited social protection supports, by necessity, families are a key resource for care and support. Paradoxically, the quality of family care for people living with Severe Mental Illness (PLSMI) has been linked to support for recovery, hospital overstay and preventable hospital readmissions. This study explored the care experiences of family members of PLSMI with patients at the national mental hospital in Kampala, Uganda, a low income country. This study was undertaken to inform the development of YouBelongHome (YBH), a community mental health intervention implemented by YouBelong Uganda (YBU), a registered NGO in Uganda. Methods: Qualitative data was analysed from 10 focus groups with carers of ready to discharge patients on convalescent wards in Butabika National Referral Mental Hospital (BNRMH), Kampala. This is a subset of data from a mixed methods baseline study for YouBelong Uganda, undertaken in 2017 to explore hospital readmissions and community supports for PLSMI from the Wakiso and Kampala districts, Uganda. Results: Three interrelated themes emerge in the qualitative analysis: a range of direct, practical care provided by the caregiver of the PLSMI, emotional family dynamics, and the social and cultural context of care. The family care giving role is multidimensional, challenging, and changing. It includes protection of the PLSMI from harm and abuse, in the context of stigma and discrimination, and challenging behaviours that may result from poor access to and use of evidence-based medicines. There is reliance on traditional healers and faith healers reflecting alternative belief systems and health seeking behaviour rather than medicalised care. Transport to attend health facilities impedes access to help outside the family care system. Underpinning these experiences is the impact of low economic resources. Conclusions: Family support can be a key resource and an active agent in mental health recovery for PLSMI in Uganda. Implementing practical family-oriented mental health interventions necessitates a culturally aware practice. This should be based in understandings of dynamic family relationships, cultural understanding of severe mental illness that places it in a spiritual context, different family forms, caregiving practices and challenges as well as community attitudes. In the Ugandan context, limited (mental) health system infrastructure and access to medications and service access impediments, such as economic and transport barriers, accentuate these complexities.
Background: With an aging global population and changes in family structure, there will be a need for increased formal and informal caregivers for family members with alzheimer's disease or other related dementias. Caregivers experience exhaustion, mental health issues, and competing demands; deciding to admit family members with dementia into long‐term care compounds the stress. The article reports on factors that influence caregivers' decisions regarding institutionalizing their family members with dementia. Methods: Eighteen articles were included in this integrative review. Findings: Influential decision‐making factors were: caregiver characteristics, care recipient characteristics, complexity of care, caregiver and family relationships, experiences with healthcare providers, financial challenges, and long‐term care facility selection. Addressing these factors can provide a layer of support to caregivers and their families during the decision‐making process.
Background: The number of patients on home mechanical ventilation (HMV) worldwide has been steadily rising as medical technological advanced. To ensure the safety and quality care of the patients receiving HMV with tracheostomy, caring behavior of family caregivers is critical. However, studies on caring behavior of family caregivers and its associated factors were remained unexplored. This study aimed to describe the caring behaviors of family caregivers for patients receiving home mechanical ventilation with tracheostomy and to identify factors associated with their caring behaviors. Methods: This was a cross-sectional study for 95 family caregivers for patients with invasive home mechanical ventilation in South Korea. Caring behaviors were assessed by the Caring Behavior Scale with 74 items with 5-point Likert scale. Data were analyzed using multiple regression analysis. Results: Caring behaviors score of caregivers was 304.68±31.05 out of 370. They were significantly associated with knowledge on emergency care (β = 0.22, p = .011), number of required instruments for care (β = 0.21, p = .010), frequency of home visit care (β = 0.19, p = .017), experience of emergency situation for the last six months (β = 0.19, p = .009) and activities of daily living of patient (β = 0.27, p = .002). Conclusion: Development of standardized multidisciplinary discharge education for improving the caring capacity of caregivers is required for successful and healthy application of home mechanical ventilation.
Background: The South African health system faces major challenges: crumbling infrastructure, shortage of beds and health professionals, and a high burden of diseases such as Tuberculosis and HIV/AIDS. The emergence of Drug Resistant Tuberculosis has made matters worse, as some of the burden of care for patients was transferred from nurses at hospitals to families in communities after patient discharge. Objective: This study explores and describes experiences of family caregivers caring for family members with Drug Resistant Tuberculosis living at home. Methods: The data from purposively selected family caregivers, caring for family members living with Drug Resistant Tuberculosis, were collected through in-depth interviews using a pretested interview guide. Saturation was reached at the 11th interview. All interviews were audio-taped, transcribed verbatim, analysed using Tech’s Eight Steps for Data Analysis, and emerging themes reported. Findings: Three themes that emerged were: issues in relation to provision of care, caregiver’s attitudes towards caregiving, and community attitudes and practices towards family caregivers. The study showed that respondents experienced challenges such as buying and preparing of nutritious food, attending to hygiene needs and management of treatment of side effects. Poverty, finance and time were barriers to caregiving roles. Participants experienced physical and psychological exhaustion, social exclusion, and stigmatisation. Conclusions: There is a need to increase coverage of the Ward-Based Outreach Teams and Community Healthcare Workers, and intensification of TB and HIV/AIDS health education in communities. Training and education on infection control, palliative treatment, and home-based medical care should be provided to families before a patient is discharged. Stakeholder relations need to be improved and collaboration fostered.
Objectives: The aim of this study was to explore the experiences of family carers supporting a relative living with dementia during and after the move to technology-enriched supported accommodation (TESA). The paper explores the informal carers (ICs) roles, the factors prompting the move to TESA, alongside their perceptions of their relatives' experience of the move and of life in a technology-enriched environment. Methods: Within a qualitative study 25 semi-structured interviews were conducted with ICs and data were analysed following a thematic approach. Results: Four themes were identified, reflecting the shift in roles and identity of both ICs and persons living with dementia. The move to TESA was linked to a perceived reduction in care-giving pressures, with positive outcomes reported for both the ICs and the people living with dementia. Smart home technologies in the facilities did not appear to impact on the decision-making during transition, however, they were valued as part of the lived experience for the people living with dementia within the TESA facilities. Conclusions: These findings are relevant to policy makers, commissioners and providers of services to highlight the engagement of all stakeholders in the provision of care for people living with dementia and their families early from diagnosis in order to facilitate person-centred practices in community settings.
Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill‐health. This has resulted in a shift in the parameters of the relationship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as "reciprocity" or "mutual support." Limited information exists about these "hidden carers" and what services are available to support them. Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member. Method: A qualitative methodology was employed using semi‐structured interviews. Nine participants with mild‐to‐moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis. Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing family member; support; impact of caregiving and future planning. Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of "in‐house" support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.
Introduction: In the literature, service users and informal caregivers have been critical towards psychiatric inpatient care. However, little is known about their fears related to hospital care. Objectives: We describe service users’ and informal caregivers’ experiences of fear in psychiatric hospital settings. Methods: The data were collected from seven mental health associations located in six Finnish cities. Focus group interviews (f=8) were conducted (2015–2016) with service users (n=20) and informal caregivers (n=15), and were guided to focus on violence and challenging situations in psychiatric care. In a secondary analysis, experiences of fear were extracted from the transcriptions and analyzed using inductive content analysis. Results: Both groups’ experiences of fear focused on themes related to staff, treatment and fellow patients. Additionally, service users had experiences of fear related to the hospital environment. Fears related to staff involved intimidating personnel using force or acting in threatening ways. Participants also described staff seemingly being afraid of patients and care givers. Three types of fears related to treatment were described: fear of not being admitted to hospital even if needed, fear of being admitted to hospital, and fear of coercive methods used in care. Fear of fellow patients involved being afraid of aggressive, unpredictable behaviors, which could cause, e.g., a lack of sleep at night for service users. Fears related to the environment itself were also discussed. Conclusions: Being hospitalized can be a difficult experience for service users and informal caregivers. These results can help psychiatric healthcare staff acknowledge areas in care that may potentially cause feelings of fear.
Background: Family of patients hospitalized in an intensive care unit (ICU) often immediately assume the role of caregiver to an individual with significant health care needs. The transition into this caregiver role may be sudden and unexpected; their experiences are not well understood. The purpose of this qualitative study was to explore experiences of family caregivers in the neurocritical care unit in order to identify areas for enhancing patient- and family-centered care. Methods: This single-center ethnographic study explored the use of systems theory to investigate the perceptions, experiences, and attitudes of family/caregivers regarding their relationships and interactions between the patient, other family, members of the healthcare provider team, and health system after an acute neurological event in Argentina. Field notes from 9 weeks of direct observation together with transcripts from nine semi-structured interviews (transcribed verbatim and translated from Spanish to English) were analyzed using a grounded theory approach. Results: Nine themes emerged based on iterative thematic analysis, including: adjusting to a changed life, managing emotions, changing role, relying on faith, redefining recovery, participating in patient care, depending on clinical experts, el tratohumano, and finding unity in purpose. In the neurocritical care environment, an important intermediary role exists for family/caregivers and the patient, other family, and healthcare providers. Conclusions: The results demonstrate the potential for family, providers, and the health system to influence family/caregivers' experience with neurocritical care. Involving families as part of the care team could have implications for patient- and family-centered care.
Introduction: There are personal and societal benefits from caregiving; however, caregiving can jeopardise caregivers’ health. The Further Enabling Care at Home (FECH+) programme provides structured nurse support, through telephone outreach, to informal caregivers of older adults following discharge from acute hospital care to home. The trial aims to evaluate the efficacy of the FECH+ programme on caregivers’ health-related quality of life (HRQOL) after care recipients’ hospital discharge. Methods and analysis: A multisite, parallel-group, randomised controlled trial with blinded baseline and outcome assessment and intention-to-treat analysis, adhering to Consolidated Standards of Reporting Trials guidelines will be conducted. Participants: (N=925 dyads) comprising informal home caregiver (18 years or older) and care recipient (70 years or older) will be recruited when the care recipient is discharged from hospital. Caregivers of patients discharged from wards in three hospitals in Australia (one in Western Australia and two in Queensland) are eligible for inclusion. Participants will be randomly assigned to one of the two groups. The intervention group receive the FECH+ programme, which provides structured support and problem-solving for the caregiver after the care recipient’s discharge, in addition to usual care. The control group receives usual care. The programme is delivered by a registered nurse and comprises six 30–45 min telephone support sessions over 6 months. The primary outcome is caregivers’ HRQOL measured using the Assessment of Quality of Life—eight dimensions. Secondary outcomes include caregiver preparedness, strain and distress and use of healthcare services. Changes in HRQOL between groups will be compared using a mixed regression model that accounts for the correlation between repeated measurements. Ethics and dissemination: Participants will provide written informed consent. Ethics approvals have been obtained from Sir Charles Gairdner and Osborne Park Health Care Group, Curtin University, Griffith University, Gold Coast Health Service and government health data linkage services. Findings will be disseminated through presentations, peer-reviewed journals and conferences.Trial registration number ACTRN12620000060943.
Background: Hospitals are increasingly motivated to improve the patient and family experience and increase patient satisfaction scores. The manner by which a provider greets patients and their families sets the tone for the hospital stay. This study aimed to improve residents' greetings of caregivers in the inpatient pediatric setting to improve family-centered communication. Methods: The study was conducted from October 2017 to April 2018 at a single, urban children's hospital on a unit with patients primarily, 5 years old. The intervention consisted of posting a prominent board outside of patients' rooms that (1) listed caregivers' preferred names (e.g., Mom/Dad, first names), (2) instructed residents to greet caregivers warmly by their preferred names, and (3) identified residents for families by name and photograph. During implementation, we conducted 5 Plan-Do-Study-Act cycles and surveyed 114 caregivers. Improvement was assessed using run charts. Results: The primary outcome was the percentage of caregivers who rated residents' warmth of greetings as "excellent." This measure increased from a baseline median of 62.5%-84.4% with$6 consecutive postintervention points above the baseline median. Conclusion: The intervention improved caregiver-perceived quality of residents' greetings and could serve as a model for other hospitals to enhance provider-family rapport and improve communication.
Introduction: The Carer Support Unit (CSU) of the Central Coast Local Health District (CCLHD), NSW, Australia, developed, trialled and implemented a Carer Readiness Tool (CRT) to help carers gauge their readiness to care at home, highlight to hospital staff areas for additional support for carers, and provide evidence of carer engagement in discharge planning. Methods: A rigorous co-design process was followed with carer consultation at key milestones in development of the CRT. The tool was piloted in two cancer/chronic renal disease inpatient units commencing November 2019. Results: The CRT was well-received by carers who appreciated the opportunity to complete the tool in their own time, not in front of the patient. Positive feedback was received from clinicians, including the breadth of the CRT’s content which contributed to better discharge planning. The need to manually incorporate a hard copy form into the electronic medical record is a limitation of the CRT. Conclusion: The CRT is context-specific and fit for purpose. During the development of the CRT, the project team focused on the face validity and usefulness of the tool. The next stage of the project will be formal evaluation of the tool to measure its impact.
Informal caregivers (referred to as caregivers within this article) play a significant part in enabling community-based models of cancer care and survivorship, whereby patients manage much of their disease and treatment outside of clinical settings. Caregivers are fundamental to healthcare in Australia, with a replacement value of $77.9 billion. Caregivers are a highly important group as they allow people diagnosed with cancer to remain at home and out of hospitals for longer than would have been possible without the caregivers involvement. [...]impacts on quality of life, a lack of sleep, reduced time for themselves and impacts on their own relationships can contribute to caregivers' levels of burden and distress. Given the experience of care provision, it is not surprising that cancer caregivers report high levels of anxiety, distress and burden. However, it is also important to acknowledge that many caregivers are able to identify positive aspects to the role, including allowing the person with cancer to remain home for longer and spending time together. The role of the general practice team The general practice team - including GPs, practice nurses, allied health professionals and administrative staff - is ideally positioned to support cancer caregivers. There are three key barriers to identifying and supporting caregivers in primary care. First, taking on the care of another person is often gradual, and it is hard to recognise the commencement of caregiving. Second, as the health of the person with cancer deteriorates, the caring role becomes all-encompassing and caregivers are unable to manage their own needs and supports. Finally, there is ambiguity regarding the legitimacy of caregiver needs. Health professionals have noted that caregivers can stand on the sidelines and be outsiders, with health professionals facing their own challenges to incorporate caregivers into the unit of care. There are two key ways in which GPs and others in the primary healthcare team can deliver support for caregivers. Acknowledging and integrating caregivers as part of the care team As caregivers are not explicitly involved in the relationship between the patient and healthcare provider, they can be rarely invited to participate. Given that the oncology team - including oncologists, hospital-based specialists, nurses and allied health professionals - can be focused on the patient's physical and mental health, the GP is someone who is well positioned to be able to check on the caregiver's physical and mental health.
Objective: Effective delivery of discharge instructions and access to postoperative care play a critical role in outcomes after pediatric surgery. Previous studies in the pediatric emergency department suggest that caregivers with language barriers have less comprehension of discharge instructions despite use of interpretation services. However, the impact of language barriers during discharge on surgical outcomes in a pediatric surgical setting has not been studied. This study examined the effect of parental language during discharge on number and mode of healthcare contact following pediatric adenotonsillectomy. Methods: A retrospective cohort study was conducted on children who underwent adenotonsillectomy at a tertiary care pediatric academic medical center from July 1, 2016 to June 1, 2018. Data were collected on consecutive patients with non-English-speaking caregivers and a systematic sampling of patients with English-speaking caregiver. Surgery-related complications and healthcare contacts within 90 days after discharge were collected. Two-tailed t tests, χ2 tests, and logistic regression were performed to assess the association between parental primary language and incidence of healthcare contact after surgery. Results: A total of 136 patients were included: 85 English-speaking and 51 non-English-speaking. The groups were comparable in age, sex, and comorbidities. The non-English group had more patients with public insurance (86% vs. 56%; P <.001). Number of encounters and types of complications following discharge were similar, but the non-English group was more likely to utilize the emergency department compared to phone calls (OR, 9.3; 95% CI, 2.3-38.2), even after adjustment for insurance type (OR, 7.9; 95% CI, 1.6-39.4). Conclusion: Language barriers at discharge following pediatric otolaryngology surgery is associated with a meaningful difference in how patients utilized medical care. Interventions to improve comprehension and access may help reduce preventable emergency department visits and healthcare costs.
Background: Thousands of patients are admitted to the intensive care units annually, which are stressful for patients and their families. The discharged patients and their families face different challenges in the caring process of the patients. Objectives: This study aimed to determine the educational needs of the families of patients discharged directly home from the postintensive care units and to compare the views of families and nurses about these needs. Method: This was a cross-sectional study. One hundred forty nurses and 140 family members of the patients discharged from intensive care units participated in the survey by convenience sampling method. A questionnaire of sociodemographic information and a researcher-made questionnaire on the educational needs of the family of patients discharged from the postintensive care units were used for data collection. Results: The mean total score of the educational needs of the patients’ families was 31.81 and 35.33 from views of families and nurses, respectively. Nurses significantly estimated the educational needs of families more than what they did (). The families and nurses reported the educational needs of self-care as well as nutrition and medicine at the highest level, respectively. Both groups reported the educational needs of defecation at the lowest level. Nurses estimated higher educational needs in all dimensions, except for the patient’s mental health and family self-care than families (). Conclusion: According to the present study, the educational needs were high from the views of nurses and families. Family need assessment is essential in designing and applying instructional interventions. Given the high level of family needs, implementing educational and practical interventions is necessary to enhance their skills.
Introduction: Subjective life expectancy is a good predictor of health and could therefore be a relevant factor in the informal caregiving context. However, no research has been conducted on the perception of life expectancy by informal caregivers. This is the first study that examines the association between transitioning into, and out of, informal caregiving, and subjective life expectancy, and the relevance of employment status and gender for these associations. Methods: A longitudinal study was conducted with data from the German Ageing Survey (waves 2008, 2011, 2014, and 2017). Up to 20,774 observations pooled over all waves were included in the main models. In total, 1,219 transitions into and 1,198 transitions out of informal caregiving were observed. Fixed effects (FE) regression analysis was used. Moderator and stratified analyses were conducted with gender and employment status used as moderator variables and to stratify the sample. Sociodemographic information, health, and lifestyle factors were controlled for. Results: Results of adjusted FE regression analyses indicated a significant reduction of subjective life expectancy when transitioning into informal caregiving. No significant change was found when transitioning out of informal caregiving. Subjective life expectancy was significantly decreased when employed individuals transitioned into informal caregiving and significantly increased when they transitioned out of caregiving. Findings for women transitioning into informal caregiving indicated a significant decrease in subjective life expectancy, while no significant change was found among men. Conclusion: The study's findings indicate that informal caregivers, female and employed caregivers in particular, perceive informal care provision as dangerous for their longevity and expect to die earlier when transitioning into informal caregiving. Thus, supportive interventions for informal caregivers, particularly employed and female informal caregivers, are recommended.
Background: Due to the unpredictable dementia trajectory, it is challenging to recognize illness progression and the appropriateness of a palliative approach. Further confusion occurs during hospitalization where the presence of comorbid conditions complicates prognostication. This research examined clinicians and families' perceptions of dementia as a terminal condition in relation to end-of-life admissions. Context: The study was based in the General Medicine units of one Australian public hospital. Medical, nursing, and social work clinicians were recruited to reflect multidisciplinary perspectives. Bereaved caregivers of deceased patients with dementia were interviewed 3 months following death. Methods: Qualitative research underpinned by a social constructionist epistemology and framed through complex systems theory. Semi-structured interviews generated data that illuminated perceptions of deterioration observed toward the end of life. Results: Although participants anticipated general cognitive and physical deterioration associated with dementia, the emergence of comorbid illness made it difficult to predict the onset of the end of life. During a hospital admission, clinicians attributed the end of life to the advanced outcomes of dementia, whereas families described new medical crises. End-of-life admissions illuminated intersections between dementia and comorbidities rather than illness progression. In contrast with the perception that people with dementia lose awareness at the end of life, families drew attention to evidence that their loved one was present during the dying phase. Significance of results: Our findings challenge the dominant understanding of dementia trajectories. Bifurcations between clinicians and families' views demonstrate the difficulties in recognizing end-of-life transitions. Implications for the integration of palliative care are considered.
Background: Hospice is underutilized. Miscommunication, decisional complexity, and misunderstanding around engaging hospice may contribute. Shared decision making (SDM), aided by patient decision aids (PtDAs), can improve knowledge and decision quality. Currently, there are no freely available hospice-specific PtDA to facilitate conversions between patients and providers about hospice care. Objective: To develop a theory-based and unbiased hospice specific PtDA. Design: Guided by the Ottawa Decision Support Framework and International Patient Decision Aid Standards, we used a theory-driven, eight-step, iterative, user-centered approach with multistakeholder input to develop a hospice-specific PtDA for anyone facing end-of-life decisions. Subjects: Feedback was obtained from a 10-member Patient Advisory Panel composed of lay patient advisors; focus groups of hospice providers, family caregivers, and patients; and the Palliative Care Research Group at University of Colorado Hospital consisting of palliative care physicians, midlevel providers, nurses, social workers, chaplains, and researchers. Results: There are many challenges in developing an unbiased hospice decision aid, including (1) balancing the provision of education (eligibility, payment) with decisional support, (2) clarifying values and incorporating emotion, (3) ideally representing the potential downsides of hospice, and (4) adequately capturing and describing care alternatives to hospice. Within this context, we developed a 12-page article and 17-minute video PtDAs. The PtDA openly acknowledges the emotional complexity of the decision and incorporates values clarification techniques to help decision makers reflect and evaluate their goals and preferences for end-of-life care. Conclusions: Hospice decision making is complex and emotional, demanding high-quality SDM aided by a formal PtDA. This work resulted in a freely available article and video PtDA for patients considering hospice. The effectiveness and implementation of these tools will be studied in future research. Clinical Trials Registration: (NCT03794700 & NCT04458090).
Background: The purpose of this study was to develop and administer surveys that assess patient and family caregiver experiences with care transitions and examine the psychometric properties of the surveys. The surveys were designed to ask about 1) the transitional care services that matter most to patients and their caregivers and 2) care outcomes, including the overall quality of transitional care they received, patient self-reported health, and caregiver effort/stress. Methods: Survey items were developed based on a review of the literature, existing surveys, focus groups, site visits, stakeholder and expert input, and patient and caregiver cognitive interviews. We administered mail surveys with telephone follow up to patients recently discharged from 43 U.S. hospitals. Patients identified the caregivers who helped them during their hospital stay (Time 1 caregiver) and when they were home (Time 2 caregiver). Time 1 and Time 2 caregivers were surveyed by telephone only. The psychometric properties of the survey items and outcome composite measures were examined for each of the three surveys. Items that performed poorly across multiple analyses, including those with low variability and/or a high missing data, were dropped except when they were conceptually important. Results: The analysis datasets included responses from 9282 patients, 1245 Time 1 caregivers and 1749 Time 2 caregivers. The construct validity of the three proposed outcome composite measures—Overall Quality of Transitional Care (patient and caregiver surveys), Patient Overall Health (patient survey) and Caregiver Effort/Stress (caregiver surveys) —was supported by acceptable exploratory factor analysis results and acceptable internal consistency reliability. Site-level reliability was acceptable for the two patient outcome composite measures, but was low for Caregiver Effort/Stress (< 0.70). In all surveys, the Overall Quality of Transitional Care outcome composite measure was significantly correlated with other outcome composite measures and most of the single-item measures. Conclusions: Overall, the final patient and caregiver surveys are psychometrically sound and can be used by health systems, hospitals, and researchers to assess the quality of care transitions and related outcomes. Results from these surveys can be used to improve care transitions, focusing on what matters most to patients and their family caregivers.
Background and Objectives: Few studies explore both negative and positive perspectives of family members who relinquish home care of a family member with dementia for systemic aged care. Research Design and Methods: This phenomenological study sought the 'lived' experience of relinquishing the role of home carer for a family member with mild to severe dementia to others within care home settings, by seeking to understand the impact of aged care on family members' psychological well-being. Using semi-structured interviews, positive and negative subjective interpretations from 17 families (27 individuals) provided data for analysis, following the protocols of interpretative phenomenological analysis. Results: One superordinate theme, mistrust/integrity, overarched oscillation between mistrust of the aged care system and a struggle for personal integrity in caring for these participants. Two sub-themes emerged: intrinsic trauma and extrinsic trauma. Intrinsic trauma explained feelings of helplessness and guilt, and internally directed responses that triggered a retreat into submission ultimately reducing the participant's role in advocacy. Extrinsic trauma represented externally directed responses such as anger and frustration, where family members became more engaged and watchful and recognised a need for vigilance and advocacy. Paradoxically oscillating between these personal struggles, participants exhibited growth, a third theme that defined assertive/advocacy utilised to nurture hope, gratitude, courage and change. Discussion and Implications: Family members experienced complex distress as they relinquished home care to others within systemic aged care for a member with dementia. By developing adaptive responses as appropriate, for example, advocating for their family member or accepting compliance with treatment, collaborative care between family and staff created better outcomes for the family member with dementia.
Background: For children with type 1 diabetes, the period of adolescence is associated with higher blood glucose levels and increased psychological distress compared to other age groups. Focusing on pre‐teens (9‐12 years) with type 1 diabetes and their families has been suggested as key to understanding and reducing these challenges. The aim of this study was to explore: 1, how diabetes affects family life, 2, experiences of and needs for support and 3, how care responsibilities are negotiated among pre‐teens with type 1 diabetes and their families. Methods: Data were obtained from four interactive workshops with pre‐teens (n = 17), their parents (n = 26) and their siblings (n = 14). Dialogue tools, for example quotes and picture cards, were used to facilitate discussion and reflection concerning family life with type 1 diabetes. Findings: Data analysis resulted in three themes: 1, diabetes takes up 'a lot of space', 2, giving and receiving support and 3, balancing control and flexibility. While diabetes took up significant space in the families, family members protected each other from their respective frustrations. Conclusions: The findings point to the significance of considering all key family members and their interactions in diabetes interventions. This includes balancing control and flexibility, negotiating responsibilities and building trust.
Aim: The aim of this study is to explore patients’ and (in)formal caregivers’ perspectives on their role(s) and contributing factors in the course of unplanned hospital readmission of older cardiac patients in the Cardiac Care Bridge (CCB) program.DesignThis study is a qualitative multiple case study alongside the CCB randomized trial, based on grounded theory principles. Methods: Five cases within the intervention group, with an unplanned hospital readmission within six months after randomization, were selected. In each case, semi‐structured interviews were held with patients (n = 4), informal caregivers (n = 5), physical therapists (n = 4), and community nurses (n = 5) between April and June 2019. Patients’ medical records were collected to reconstruct care processes before the readmission. Thematic analysis and the six‐step analysis of Strauss & Corbin have been used. Results: Three main themes emerged. Patients experienced acute episodes of physical deterioration before unplanned hospital readmission. The involvement of (in)formal caregivers in adequate observation of patients’ health status is vital to prevent rehospitalization (theme 1). Patients and (in)formal caregivers’ perception of care needs did not always match, which resulted in hampering care support (theme 2). CCB caregivers experienced difficulties in providing care in some cases, resulting in limited care provision in addition to the existing care services (theme 3). Conclusion: Early detection of deteriorating health status that leads to readmission was often lacking, due to the acuteness of the deterioration. Empowerment of patients and their informal caregivers in the recognition of early signs of deterioration and adequate collaboration between caregivers could support early detection. Patients’ care needs and expectations should be prioritized to stimulate participation.Impact(In)formal caregivers may be able to prevent unplanned hospital readmission of older cardiac patients by ensuring: (1) early detection of health deterioration, (2) empowerment of patient and informal caregivers, and (3) clear understanding of patients’ care needs and expectations.
Objective: The objective of this study was to understand the conceptualisation and development of a novel way of providing end‐of‐life care in a Cottage Hospice setting, with a focus on the role of family carers and volunteers within this care model. Methods: A participatory action research design enabled a situational analysis, together with change processes. The study setting was a hospice in the South of England, and its network of wider associates in the local health economy. Participants were purposively sampled to provide relevant information. Data collection (2017–2018) included documents (e.g., meeting minutes) and interviews (individual and group) with external (e.g., GPs) and internal (e.g., staff, managers, volunteers, patients, family carers) stakeholders. These were followed by action cycles conducted by a core action group which explored issues related to family and young carers, the relationship between the main and Cottage Hospices and workforce engagement with the change process. Iterative, inductive, thematic analysis was followed by axial coding facilitated within NVivo. Twenty‐six individual and eight follow‐up interviews, two group interviews and five discrete action cycles were completed. Findings: At the core was a focus on disruption of the norm of professionally provided and mediated care, with three main themes: imagining the future of Cottage Hospice (growing demand, a home‐like space, innovative roles for families and volunteers); developing the role of family caregivers (making agreements, meeting needs, social inclusion and the 'unknown' expectations) and quality and safety issues (negative perceptions, personalised care and volunteer roles). Change was viewed as both a threat and an opportunity. Cottage Hospice represents the possibility of a truly new way of meeting the needs of dying people and their families, and could act as a template for progressive service developments elsewhere.
Background: A transition of care (TOC) process from pediatric to adult medicine ensures that adolescents receive ongoing care into young adulthood, a time of high risk for preventable morbidity and mortality. Methods: We explored patient, caregiver, and physician perspectives on ways to improve TOC communication with healthy adolescents. Two researchers conducted key informant interviews with healthy 12- to 18-year-old adolescents, their caregivers, and primary care physicians working in pediatric, internal, and family medicine. Data saturation was reached after interviewing 12 adolescents, 10 caregivers, and 36 physicians. Findings: Three themes were identified: perceptions of TOC; effective communication among the triad of adolescents, caregivers, and providers; and early communication about TOC preparation. From these themes, a model of communication was identified and adapted, outlining the communication skills and responsibilities for physicians and patients during TOC. Conclusions: Physicians must understand how to use strong, consistent, adolescent-centered communication to execute effective TOC.
Background: People requiring palliative care should have their needs met by services acting in accordance with their wishes. A hospice in the south of England provides such care via a 24/7 hospice at home service. This study aimed to establish how a nurse-led night service supported patients and family carers to remain at home and avoid hospital admissions. Methods: Semi-structured interviews were carried out with family carers (n=38) and hospice-at-home staff (n=9). Through night-time phone calls and visits, family carers felt supported by specialist hospice staff whereby only appropriate hospital admission was facilitated. Results: Staff provided mediation between family carer and other services enabling more integrated care and support to remain at home. Conclusions: A hospice-at-home night service can prevent unnecessary hospital admissions and meet patient wishes through specialist care at home.
Aim: The purpose of this paper is to conceptually define "caregiver willingness" for application to a family member providing care to a critically ill loved one during an intensive care unit (ICU) hospitalization. Background: Delivering care to a family member may have psychological benefits for both the caregiver and the critically ill loved one; however, the willingness of family members to provide care is an elusive concept. Examination of the "caregiver willingness" concept will help to advance nursing science. Design: Walker and Avant's eight step strategy guided identification of the defining attributes, empirical referents, antecedents, and consequences of "caregiver willingness." Data Source: Academic Search Complete, CINAHL, MEDLINE, APA PsycInfo, and Psychology and Behavioral Health Collections were used to search for literature published between 2000 and 2020. Review Methods: A literature search was conducted using keywords, such as "caregiver," "willingness," "willing to care," "family or families or relatives or siblings or caregiver," and "critically ill or intensive care or ICU or critical care." Results: A definition of caregiver willingness was constructed and defined as "a family member or significant other's affirmation or acknowledgment of openness to engage in the physical and/or emotional supportive care of a loved one who is critically ill and cannot perform self‐care." Conclusion: The definition provides a foundation for instrument development to measure caregiver willingness and possible theory expansion for family engagement and caregiving in the ICU.
Introduction: Transitions of care between acute hospital and community settings are points of vulnerability for people with geriatric syndrome. Routinely including informal caregivers into the transition processes may mitigate risk. Guidance for operational aspects of caregiver inclusion is currently lacking in healthcare policy and fails to address the barriers faced by caregivers and healthcare professionals. Methods: A questionnaire and a semi-structured interview were piloted with acute care physiotherapists who facilitate patient discharge into community settings. The questionnaire was analysed using summary statistics and interviews were thematically analysed by researchers, using NVivo 12 software. Results: Questionnaire responses indicated mixed satisfaction with current caregiver integration by the multidisciplinary team. Four themes were shaped in the interviews: inconsistent caregiver engagement, individuals working in a system, an outdated model of care, and invisible care gaps. Discussion: Feedback loops constructed from participant questionnaires and interview responses informed the identification of barriers and solutions. These are system wide and address automated integration, cultural shift, reimbursement models, and flexible structures to enhance informal caregiver participation. Future research is urgently required to translate, implement, and evaluate enhanced caregiver integration to ensure sustainable, person-centred healthcare delivery.
Background: Long-term care, also known as aging services, is evolving to meet the needs of the aging population in the United States, which is increasingly ethnically and racially diverse. The objective of this qualitative multiple case study was to understand how immediate family members experienced the transition of older African American women as they moved into assisted living facilities. Design: Black feminist theory provided a theoretical framework. Narrative interview data were collected from four adult children family caregivers who facilitated the move. Results: Three themes emerged from the content analysis: (a) Transition is not planned in advance and does not happen until a critical event or incident occurs that changes the older adult’s physical, social, or emotional status; (b) The transition was more difficult than had been thought for the older women and their families; and (c) Older adults expect that family members stay connected and involved after the transition, and family members may have similar expectations. Human services professionals may use the results to provide better-informed programs and services for older African American women and their family member caregivers. Conclusion: Social change implications suggest developing a transition model to improve assessment and evaluation processes, promote cultural competence initiatives, and promote a person-centered approach to the transition process in order to begin to identify a framework that might be useful for human services practitioners.
BACKGROUND: Caregivers play a crucial role in taking over the important task of looking after patients post-hospitalisation. Caregivers who are unfamiliar with patients' post-discharge care often experience caregiver stress, while patients may see deterioration in their condition. As caregivers are our core partners in healthcare, it is therefore necessary for patient navigators to recognise, assess and address caregivers' needs or burden as early as on admission to hospital. Patient navigators are trained registered nurses whose main role is to provide patients and caregivers with personalised guidance through the complex healthcare system. OBJECTIVES: This quality improvement study examined the efficacy of using the Zarit Burden Interview as a tool in helping patient navigators recognise caregiver burden early and the effectiveness of targeted interventions on caregiver burden. METHODS: Various quality improvement tools were used. Eighty-six patient-caregiver dyads who met the inclusion criteria were enrolled. Informal caregivers were assessed for caregiver burden using the Zarit Burden Interview during hospital admission (T0) and again at 30 days postdischarge (T1), post-intervention. RESULTS: There was significant improvement in the Zarit Burden mean scores from T0 to T1 reported for the 80 dyads who completed the study, even after adjusting for covariates (T0 mean=11.08, SD=7.64; T1 mean=2.48, SD=3.36, positive ranks, p<0.001). Highest burden identified by most caregivers were the personal strain; trying to meet other responsibilities and uncertain about what to do in caring for their loved one. By recognising the different aspects of caregiver burden early, patient navigators were able to focus their interventions. CONCLUSION: Early recognition of caregiver burden and targeted interventions were found to be effective at reducing caregiver burden in a tertiary hospital.
What Is Known on the Subject: Family members and friends (informal carers) are very important for providing support to people with mental health difficulties. When these carers are included to care planning patients seem to benefit, as they are less likely to relapse.; What the Paper Adds to Existing Knowledge: There are three types of interventions including carers in the patients'transition 1) programmes that offer education in hospital; 2) programmes that involve carers in planning the patients discharge; and 3) programmes that involve carers in hospital care, discharge planning and also follow-up in the community. Interventions including carers that take place both in the hospital and the community have the clearest evidence for benefit on relapse reduction.; What Are the Implications for Practice: Comprehensive interventions have the best evidence for effectiveness but challenges in their implementation and resourcing should be considered. It might worth trying to identify and test simpler interventions focusing on discharge planning that can be used in busy services and require more limited resources whilst providing opportunities for the participation of carers.;
Abstract: INTRODUCTION: Involving informal carers (family and friends of patients) in mental health interventions can lead to positive clinical and psychosocial outcomes such as relapse prevention or treatment adherence.; Aim/question: To explore the evidence on the effectiveness of different models that involve carers in the transition between hospital and community mental health care.; Methods: Five electronic databases (PsycINFO, CINAHL, MEDLINE, Embase and Scopus) and Grey literature (Open Grey and Grey Literature report) were systematically searched. The results were analysed using a narrative synthesis.; Results: Fourteen papers were identified. They described twelve interventions that were categorized into three groups: 1) purely educational programmes in preparation of discharge; 2) programmes that involved carers in planning the transition from the mental health inpatient treatment to community mental health services; and 3) programmes that bridged into the aftercare involving carers in community follow-up. The most comprehensive interventions, i.e. those including psychoeducation, care planning and aftercare follow-up were better evaluated and showed a clearer benefit in improving long-term outcomes and, in particular, reduce re-hospitalization.; Implications for Practice: Comprehensive interventions showed the clearest benefit in improving long-term clinical outcomes of patients. Future research should explore implementation, costs and cost-effectiveness, as comprehensive interventions delivered across different settings are likely to require wide-ranging organizational changes and significant resources.
Background Multiple changes are made to older patients' medicines during hospital admission, which can sometimes cause confusion and anxiety. This results in problems with post-discharge medicines management, for example medicines taken incorrectly, which can lead to harm, hospital readmission and reduced quality of life. Aim To explore the experiences of older patients and their family carers as they enacted post-discharge medicines management. Design Semi-structured interviews took place in participants' homes, approximately two weeks after hospital discharge. Data analysis used the Framework method. Setting and participants Recruitment took place during admission to one of two large teaching hospitals in North England. Twenty-seven participants aged 75 plus who lived with long-term conditions and polypharmacy, and nine family carers, were interviewed. Findings Three core themes emerged: impact of the transition, safety strategies and medicines management role. Conversations between participants and health-care professionals about medicines changes often lacked detail, which disrupted some participants' knowledge and medicines management capabilities. Participants used multiple strategies to support post-discharge medicines management, such as creating administration checklists, seeking advice or supporting primary care through prompts to ensure medicines were supplied on time. The level to which they engaged with these activities varied. Discussion and conclusion Participants experienced gaps in their post-discharge medicines management, which they had to bridge through implementing their own strategies or by enlisting support from others. Areas for improvement were identified, mainly through better communication about medicines changes and wider involvement of patients and family carers in their medicines-related care during the hospital-to-home transition.
Background: The majority of stroke survivors return to their homes and need assistance from family caregivers to perform activities of daily living. These increased demands coupled with the lack of preparedness for their new roles lead to a high risk for caregivers developing depressive symptoms and other negative outcomes. Follow-up home support and problem-solving interventions with caregivers are crucial for maintaining stroke survivors in their homes. Problem-solving interventions are effective but are underused in practice because they require large amounts of staff time to implement and are difficult for caregivers logistically.; Objective: The aim of this study is to test a problem-solving intervention for stroke caregivers that can be delivered over the telephone during the patient's transitional care period (time when the stroke survivor is discharged to home) followed by 8 asynchronous online sessions.; Methods: The design is a two-arm parallel randomized clinical trial with repeated measures. We will enroll 240 caregivers from eight Veterans Affairs (VA) medical centers. Participants randomized into the intervention arm receive a modified problem-solving intervention that uses telephone and web-based support and training with interactive modules, fact sheets, and tools on the previously developed and nationally available Resources and Education for Stroke Caregivers' Understanding and Empowerment Caregiver website. In the usual care group, no changes are made in the information, discharge planning, or care the patients who have had a stroke normally receive, and caregivers have access to existing VA resources (eg, caregiver support line, self-help materials). The primary outcome is a change in caregiver depressive symptoms at 11 and 19 weeks after baseline data collection. Secondary outcomes include changes in stroke caregivers' burden, knowledge, positive aspects of caregiving, self-efficacy, perceived stress, health-related quality of life, and satisfaction with care and changes in stroke survivors' functional abilities and health care use. The team will also determine the budgetary impact, facilitators, barriers, and best practices for implementing the intervention. Throughout all phases of the study, we will collaborate with members of an advisory panel.; Results: Study enrollment began in June 2015 and is ongoing. The first results are expected to be submitted for publication in 2021.; Conclusions: This is the first known study to test a transitional care and messaging center intervention combined with technology to decrease caregiver depressive symptoms and to improve the recovery of stroke survivors. If successful, findings will support an evidence-based model that can be transported into clinical practice to improve the quality of caregiving post stroke.; Trial Registration: ClinicalTrials.gov NCT01600131; https://www.clinicaltrials.gov/ct2/show/NCT01600131.; International Registered Report Identifier (irrid): DERR1-10.2196/21799.
Introduction: Informal caregiving during hospitalization of older adults is significantly related to hospital processes and patient outcomes. Studies in home settings demonstrate that ethno-cultural background is related to various aspects of informal caregiving; however, this association in the hospital setting is insufficiently researched. Objectives: Our study explore potential differences between ethno-cultural groups in the amount and kind of informal support they provide for older adults during hospitalization. Methods This research is a secondary data analysis of two cohort studies conducted in Israeli hospitals. Hospitalized older adults are divided into three groups: Israeli-born and veteran immigrant Jews, Arabs, and Jewish immigrants from the Former Soviet Union (FSU). Duration of caregiver visit, presence in hospital during night hours, type of support (using the Informal Caregiving for Hospitalized Older Adults scale) are assessed during hospitalization. Results are controlled by background parameters including functional Modified Barthel Index (MBI) and cognitive Short Portable Mental Status Questionnaire (SPMSQ) status, chronic morbidity (Charlson), and demographic characteristics. Results: Informal caregivers of "FSU immigrants" stay fewer hours during the day in both cohorts, and provide less supervision of medical care in Study 2, than caregivers in the two other groups. Findings from Study 1 also suggest that informal caregivers of "Arab" older adults are more likely to stay during the night than caregivers in the two other groups. Conclusions: Ethno-cultural groups differ in their patterns of caregiving of older adults during hospitalization. Health care professionals should be aware of these patterns and the cultural norms that are related to caregiving practices for better cooperation between informal and formal caregivers of older adults.
Objective: To understand the management of home care by family caregivers of dependent elderly people after hospital discharge.; Methods: Qualitative research guided by hermeneutics-dialectic, anchored in the theory of communicative action. Data collection took place using a semi-structured interview with 11 participants.; Results: Two categories were constructed: Management of the many types of care by the caregiver and the relationship between family caregiver and health care network. Care and management actions carried out routinely cause major changes in the family caregiver's life. He/she does not recognize planning, home care periodicity or support in required procedures.; Final Considerations: The management of home care for dependent elderly people after hospital discharge is complex, involving physical and emotional overloads, as well as difficulties in getting support from health services. The planning shared between the health team and the family since the discharge is required, and the better visibility of the role of primary care when the patient is assisted by a home care service.
Aim To understand how family caregivers of older adults hospitalized for orthopaedic surgery are integrated by nurses in delirium prevention care. Design Multiple case study. Methods The sample consisted of eight cases. Each case comprised an older adult, a family caregiver, and a nurse. Data were collected from September 2017 - April 2018 through various instruments, including semi-structured interviews and family caregiver logs. Within- and across-case analyses were conducted, based on the model of The Care Partner Engagement developed by Hill, Yevchak, Gilmore-Bykovskyi, & Kolanowski (Geriatric Nursing, 35, 2014, 272). Results Two themes emerged: (a) family caregivers were engaged in caring for the older adults during their hospital stay, though they had differences in terms of views and needs; and (b) family caregivers communicated with nurses but nurses did not recognize their role and did not integrate them much in care. Conclusion The presence and availability of family caregivers, their sense of responsibility towards the hospitalized older adults, and their positive effects on them suggest that family caregivers could be integrated more systematically in a care partnership with nurses. Poor integration of family caregivers in delirium prevention care shows that nurse delirium prevention competencies and their relational skills for communicating effectively with family caregivers need to be developed further. Impact Integrating family caregivers in delirium prevention care for older adults is a challenge for nurses. Family caregivers are engaged during the hospitalization of older adults, though differences and problems exist between the two groups. While there is communication between patients, family caregivers, and nurses, nurses do not recognize the role of family caregivers and hardly integrated them in the delirium prevention care of hospitalized older adults. Nurses must adopt a patient- and family-centred approach. Care and training facilities must make resources available to implement this approach in nursing practice.
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.
Background: The Caregiver Advise, Record, Enable (CARE) Act encourages inclusion of family caregivers in the hospitalization process for patients. Translating the state laws into meaningful changes within the health care delivery system can be challenging and requires time. This study sought to examine early compliance with and implementation of the CARE Act reported by hospitals in the Commonwealth of Pennsylvania.; Methods: We sent an online survey to hospital executives in Pennsylvania in 2017. Descriptive statistics were computed to examine hospital characteristics and used to assess compliance and implementation of the CARE Act tenets.; Results: Most hospitals reported that changes have been and are being made to comply with the CARE Act (90.9%). Hospital executives reported that the family caregiver designation is available in 63.6% of the hospitals and notification of patient discharge is available in 45.5%. Hospital executives reported that family caregiver education and instruction is occurring in 31.8% of all inpatient stays. Hospital executives indicated that they are still developing processes to comply with the legislation and to integrate family caregivers into hospital systems and processes.; Conclusions: Our findings suggest that hospitals are complying with the legislation, while fully operationalizing the components of the CARE Act is a work in progress.
Purpose To identify transitional palliative care (TPC) interventions for older adults with non-malignant chronic diseases and complex conditions. Design/methodology/approach A systematic review of the literature was conducted. CINAHL, Cochrane Library, Embase and Pubmed databases were searched for studies reporting TPC interventions for older adults, published between 2002 and 2019. The Crowe Critical Appraisal Tool was used for quality appraisal. Findings A total of six studies were included. Outcomes related to TPC interventions were grouped into three categories: healthcare system-related outcomes (rehospitalisation, length of stay [LOS] and emergency department [ED] visits), patient-related outcomes and family/carer important outcomes. Overall, TPC interventions were associated with lower readmission rates and LOS, improved quality of life and better decision-making concerning hospice care among families. Outcomes for ED visits were unclear. Research limitations/implications Positive outcomes related to healthcare services (including readmissions and LOS), patients (quality of life) and families (decision-making) were reported. However, the number of studies supporting the evidence were limited. Originality/value Studies examining the effectiveness of existing care models to support transitions for those in need of palliative care are limited. This systematic literature review identified and appraised interventions aimed at improving transitions to palliative care in older adults with advanced non-malignant diseases or frailty.
Background: Transitioning care from hospital to home is associated with risks of adverse events and poor continuity of care. These transitions are even more challenging when new approaches to care, such as palliative care, are introduced before discharge. Family caregivers (FCGs) are expected to navigate these transitions while also managing care. In addition to extensive caregiving responsibilities, FCGs often have their own health needs that can inhibit their ability to provide care. Those living in rural areas have even fewer resources to meet their self-care and caregiving needs. The purpose of this study is to test the efficacy and cost-effectiveness of an intervention to improve FCGs' health and well-being. The intervention uses video visits to teach, guide, and counsel FCGs in rural areas during hospital-to-home transitions. The intervention is based on evidence of transitional and palliative care principles, which are individualized to improve continuity of care, provide caregiver support, enhance knowledge and skills, and attend to caregivers' health needs. It aims to test whether usual care practices are similar to this technology-enhanced intervention in (1) caregiving skills (e.g., caregiving preparedness, communication with clinicians, and satisfaction with care), (2) FCG health outcomes (e.g., quality of life, burden, coping skills, depression), and (3) cost. We describe the rationale for targeting rural caregivers, the methods for the study and intervention, and the analysis plan to test the intervention's effect. Methods: The study uses a randomized controlled trial design, with FCGs assigned to the control condition or the caregiver intervention by computer-generated lists. The intervention period continues for 8 weeks after care recipients are discharged from the hospital. Data are collected at baseline, 2 weeks, 8 weeks, and 6 months. Time and monetary costs from a societal perspective are captured monthly. Discussion: This study addresses 2 independent yet interrelated health care foci-transitional care and palliative care-by testing an intervention to extend palliative care practice and improve transition management for caregivers of seriously ill patients in rural areas. The comprehensive cost assessment will quantify the commitment and financial burden of FCGs. Trial Registration: ClinicalTrials.gov NCT03339271 . Registered on 13 November 2017. Protocol version: 11.
Background: Caregivers play a crucial role in taking over the important task of looking after patients post-hospitalisation. Caregivers who are unfamiliar with patients' post-discharge care often experience caregiver stress, while patients may see deterioration in their condition. As caregivers are our core partners in healthcare, it is therefore necessary for patient navigators to recognise, assess and address caregivers' needs or burden as early as on admission to hospital. Patient navigators are trained registered nurses whose main role is to provide patients and caregivers with personalised guidance through the complex healthcare system.; Objectives: This quality improvement study examined the efficacy of using the Zarit Burden Interview as a tool in helping patient navigators recognise caregiver burden early and the effectiveness of targeted interventions on caregiver burden.; Methods: Various quality improvement tools were used. Eighty-six patient-caregiver dyads who met the inclusion criteria were enrolled. Informal caregivers were assessed for caregiver burden using the Zarit Burden Interview during hospital admission (T0) and again at 30 days postdischarge (T1), post-intervention.; Results: There was significant improvement in the Zarit Burden mean scores from T0 to T1 reported for the 80 dyads who completed the study, even after adjusting for covariates (T0 mean=11.08, SD=7.64; T1 mean=2.48, SD=3.36, positive ranks, p<0.001). Highest burden identified by most caregivers were the personal strain; trying to meet other responsibilities and uncertain about what to do in caring for their loved one. By recognising the different aspects of caregiver burden early, patient navigators were able to focus their interventions.; Conclusion: Early recognition of caregiver burden and targeted interventions were found to be effective at reducing caregiver burden in a tertiary hospital.
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: In the European Union (EU), informal caregivers provide 60 per cent of all care. Informal caregiving ranges from assistance with daily activities and provision of direct care to helping care recipients to navigate within complex healthcare and social services systems. While recent caregiver surveys document the impact of informal caregivers, systematic reviews show that they have unmet needs. Because of the political desire to reduce the length of hospital stays, older patients are discharged from the hospital 'quicker and sicker' than before. The transition between different levels of the healthcare system and the period after hospital discharge is critical for elderly patients. Caregivers' perspectives on the quality of older patients' care journeys between levels of the healthcare system may provide valuable information for healthcare providers and policymakers. This study aims to explore older patient's informal caregivers' views on healthcare quality in the hospital and in the first 30days after hospitalisation. METHOD: We conducted semi-structured individual interviews with 12 participants to explore and describe informal caregivers' subjective experiences of providing care to older relatives. The interviews were then transcribed and analysed thematically. RESULTS: The analysis yielded the overarching theme 'Informal caregivers - a health service alliance - quality contributor', which was divided into four main themes: 'Fast in, fast out', 'Scant information', 'Disclaimer of responsibility' and 'A struggle to secure professional care'. The healthcare system seemed to pay little attention to ensuring mutual understandings between those involved in discharge, treatment and coordination. The participants experienced that the healthcare providers' main focus was on the patients' diseases, although the health services are supposed to view patients holistically. CONCLUSION: Based on the information given by informal caregivers, health services must take into account each person's needs and preferences. To deliver quality healthcare, better coordination between inter-professional care teams and the persons they serve is necessary. Health professionals must strengthen the involvement of caregivers in transitions between care and healthcare. Future work should evaluate targeted strategies for formal caregivers to cooperate, support and empower family members as informal caregivers.
Australia faces the challenge of an ageing population. The incidence of people with dementia unable to live in the community is expected to rise leading to demands on care facilities to provide specialised care. This paper reports on the effect a purpose-built Memory Support Unit has on multiple participants during the transition from home, or an aged care residence, to high level dementia care. The aim of this research was to understand the effect of a purpose-built Memory Support Unit on the experiences of those with dementia who are transitioning into this environment, their family or carers and staff. A qualitative descriptive methodology was adopted to frame the research. Face-to-face interviews were conducted with nine family members, two residents and three Registered Nurses. A purpose-built Memory Support Unit may have a positive effect on the older person, their families, carers and staff, thus improving the experience of all participants as the older person transitions into dementia care. Optimising design of the physical environment may foster a more person-centered orientation to care and positive outcomes for residents, family members or carers and staff. Purpose built environments may have a meaningful subjective effect on the wellbeing of older people during the transition from their residence to permanent dementia care, their family, carers and staff. It is recommended that architects, funding agencies and aged care providers engage with the growing body of evidence that purpose-built environments, such as the Memory Support Unit, to enhance the quality of the experience of those transitioning to high level dementia care, their family or carers and staff.
Background: Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers' support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely. Aim: To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers during hospital discharge at end of life. Design: Longitudinal qualitative study with thematic analysis. Setting/participants: One National Health Service Trust in England: 12 hospital practitioners, one hospital administrator and four community practitioners. We provided training in CSNAT intervention use and implementation. Practitioners delivered the intervention for 6 months. Data collection was conducted in three phases: (1) pre-implementation interviews exploring understandings, anticipated benefits and challenges of the intervention; (2) observations of team meetings and review of intervention procedures and (3) follow-up interviews exploring experiences of working with the intervention. Results: Despite efforts from practitioners, implementation was challenging. Three main themes captured facilitators and barriers to implementation: (1) structure and focus within carer support; (2) the 'right' people to implement the intervention and (3) practical implementation challenges. Conclusions: Structure and focus may facilitate implementation, but the dominance of outcomes measurement and performance metrics in health systems may powerfully frame perceptions of the intervention and implementation decisions. There is uncertainty over who is best-placed or responsible for supporting carers around hospital discharge, and challenges in connecting with carers prior to discharge.
Objective: development and validation the content of a nursing care protocol with educational interventions for family caregivers of elderly people after stroke. Methods: a methodological study conducted in three stages: (1) protocol development through literature review; (2) pretest with multidisciplinary team, analyzed with literature articulation; (3) protocol validation by the Delphi Technique. Results: the protocol was structured in the following areas: Disease Guidelines; Emotional Support; Using the Health Care Network; Diet; Airways; Medications; Hygiene; Skin Care; Disposal; Dressing/Undressing; Positioning and Transfer; Fall Prevention. In the pretest, eight experts assessed protocol clarity and content. In validation, there were two rounds by the Delphi Technique. The validated protocol consisted of 12 domains, containing 42 items and 240 care guidelines. Conclusion: the protocol qualifies the transition of care after hospital discharge assisting nurses in home care practice.
Background and Purpose: A hip fracture is an unexpected traumatic event. Caregivers of patients with an acute hip fracture have only short time to learn the new skills of postoperative care and handling of the patient. This sudden responsibility changes the life of the caregivers who perceive a higher level of preoccupation about the care of their family member/friend. The objective of this study was to develop and test feasibility for a post-hip fracture inpatient instructional workshop for caregivers of older adults with hip fracture and to establish their knowledge of hip fracture recovery and perceptions of the utility and satisfaction with the workshop. Methods: This 2-part study was conducted at the University Hospital of Granada, Spain, from September 2016 to April 2017. We invited caregivers of patients (60 years of age or older) hospitalized for a surgically treated fall-related hip fracture to attend an informational and skill development hospital-based workshop (60-90 minutes in duration) on post-discharge management strategies. Following the workshop, we invited caregivers to complete a questionnaire to obtain their knowledge about care after hip fracture and their perceived concerns. Furthermore, we requested that they provide feedback on workshop utility and satisfaction (0-10 points) and suggestions for improving the workshop. Results and Discussion: We delivered 42 workshops over an 8 month period. One hundred three caregivers attended the sessions and enrolled in the study, mean (SD) age: 52.1 (12.8) years. Sixty-nine percent of the caregivers were women. Caregivers' main concern was apprehension for delivering physical care to their family member/friend (75%), followed by lack of time (42%). Caregivers who were employed were 3.16 times as likely to be concerned about time availability to provide care for their family member/friend. The median (Q1, Q3) of both workshop utility and satisfaction was 10 (10, 10), minimum-maximum: 7 to 10. Conclusions: Caregivers in this study stated that the workshop was useful and satisfactory. Because caregivers play such a vital role in recovery after hip fracture, providing knowledge and skill development as part of health care delivery may support more person-centered care.
Background: Post-acute home health-care (HHC) services provide a unique opportunity to train and support family caregivers of older adults returning home after a hospitalization. To enhance family-focused training and support strategies, we must first understand caregivers' experiences.; Objective: To explore caregivers' experiences regarding training and support for managing older adults' physical functioning (PF) needs in the post-acute HHC setting.; Method: We conducted a qualitative descriptive study using semi-structured telephone interviews of 20 family caregivers. Interviews were recorded, transcribed, and analyzed using conventional content analysis.; Results: We identified the following primary categories: facilitators to learning (eg, past experience, learning methods), barriers to learning (eg, learning on their own, communication, timing/logistics, preferred information and timing of information delivery), and interactions with HHC providers (eg, positive/negative interactions, provider training and knowledge).; Conclusion: Caregivers were responsive to learning strategies to manage older adults' PF needs and, importantly, voiced ideas to improve family-focused training and support. HHC providers can use these findings to tailor training and support of family caregivers in the post-acute HHC setting.
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: Regaining pre-hospitalization activity levels is only achieved in 30-50% of older patients. Extra physiotherapy time has been proven to improve functional outcome and shorten length of stay, but is costly. Considering their key role in caring for older people, involving informal caregivers in rehabilitation might further improve functional performance. Aim: To determine if in-hospital or post discharge caregiver involvement can increase functional performance in older adults. The secondary aim was to determine if caregiver involvement can influence, quality of life of patient and caregiver, medical costs, readmission rate, discharge location, and mortality. Design: Systematic review with narrative synthesis. Methods: The electronic bibliographic databases MEDLINE, Embase, CINAHL, Cochrane and Web of Science were searched for (quasi) experimental and observational studies, with the following inclusion criteria; caregiver involvement regarding functional performance, mean age over 65 years, admitted to a hospital unit and subsequently discharged to their home setting. Risk of bias was assessed with the Rob 2 (randomized trials) and the ROBINS-1 tool (non-randomized studies). Results: Eight studies of an initial 4683 were included: four randomized controlled trials, one prospective cohort study, one non-randomized controlled trial, one subgroup analysis of an RCT and one prospective pre-post study. All but one study included patients with stroke. Three types of caregiver interventions could be distinguished: a care pathway (inclusion of caregivers in the process of care), education on stroke and teaching of bed-side handling-skills, and caregiver-mediated exercises. The one study evaluating the care pathway reported 24.9% more returns home in the intervention group. Studies evaluating the effect of education and bed-side handling-skills reported higher effect sizes for several outcomes with increasing session frequency. All studies with caregiver-mediated exercises showed beneficial effects on functional performance, immediately after the intervention and within 3 months follow-up. Conclusion: The findings of this review suggest that involvement of caregivers in the rehabilitation of older adults leads to better functional performance up to 3 months after initiation. However, evidence is low and mainly focusing on stroke.
Family caregivers of an older person who was recently hospitalized often feel unprepared for their new or expanded tasks. Quality and continuity of care for older people is expected to improve when nurses collaborate with family caregivers as partners in care. The aim of this study was to explore the unique contribution of collaboration between family caregivers of older patients and hospital nurses as a possible predictor for preparedness of caregiving after hospital discharge. With a cross sectional design, a postal survey was sent to 777 family caregivers of home-dwelling hospitalized patients (≥70 years). Regression analyses were used to test the association between collaboration and preparedness for caregiving. In total, 506 (68%) family caregivers responded of whom 281 (38%) were eligible. Their mean (SD) age was 65 (13) and 71% were female. Family caregivers' level of collaboration with nurses was significantly associated with their preparedness for caregiving.
Older adults with COVID-19 who survive hospitalizations and return to their homes confront substantial health challenges and an unpredictable future. While understanding of the unique needs of COVID-19 survivors is developing, components of the evidence-based Transitional Care Model provide a framework for taking a more immediate, holistic response to caring for these individuals as they moved back into the community. These components include: increasing screening, building trusting relationships, improving patient engagement, promoting collaboration across care teams, undertaking symptom management, increasing family caregiver care/education, coordinating health and social services, and improving care continuity. Evidence generated from rigorous testing of these components reveal the need for federal and state policy solutions to support the following: employment/redeployment of nurses, social workers, and community health workers; training and reimbursement of family caregivers; widespread access to research-based transitional care tools; and coordinated local efforts to address structural barriers to effective transitions. Immediate action on these policy options is necessary to more effectively address the complex issues facing these older adults and their family caregivers who are counting on our care system for essential support.
Aims The purpose of this study was to validate patient's primary caregiver and their nurse's perception of patient discharge readiness assessment and their association with postdischarge medical consumption. Design The study employed a descriptive research, prospective longitudinal study design. Method The study was performed in a ward of a medical centre in Taipei, Taiwan, from June 2017–May 2018. Obtained data were analysed using an independent t test, one‐way ANOVA and logistic regression approach. Results/findings The number of comorbidities and the number of days of hospital stay were positively associated with post discharge emergency room visits. Caregiver readiness for hospital discharge had significant negative correlation with patient's 30‐day readmission. Both caregiver and nurse readiness for the hospital discharge scale score were not factors associated with the patients' 30‐day emergency room visit. Conclusion Based on the research findings, to assess the discharge readiness as perceived by caregivers at patients' discharge is recommended. Impact Caregiver and nurse scores on readiness for hospital discharge showed a significant positive correlation. The higher the score of a caregiver's readiness for a patient's hospital discharge, the lower the 30‐day readmission rate. Family‐centred care enables patients to safely pass though the transition phase from hospital to community and reduces the postrelease consumption of medical resources. The discharge readiness perceived by caregivers should be included in any decision‐making
The role played by family caregivers in delivering long-term care is crucial: they enhance the quality of care perceived by the patients and support the shift to out-of-hospital care. However, taking care of a relative entails a huge burden that usually begins with the patient’s hospital discharge and may mean that caregivers become patients in need of care as well. Owing to socio-demographic trends, informal caregiving is the most important source of care in community settings; hence targeting the caregivers’ burden properly is crucial. This study explores how action research (AR) can be used to develop new hospital practices to manage the burden borne by family caregivers when patients are discharged from hospital. The 7-month-long action research reported in this paper consisted of three stages (burden identification, burden sharing, and burden management) and it was conducted in a teaching hospital in Rome (Italy). Both quantitative (surveys) and qualitative (focus groups and simulation sessions) techniques were used to engage participants. The AR demonstrates that there is a feasible way in which hospital managers can address proactively the caregivers’ needs in the hospital discharge process, to the advantage of the patients and the entire community.
This article describes our recommendation for adapting hospital-based RED (Reengineered Discharge) processes to skilled nursing facilities (SNFs). Using focus groups, the SNFs’ discharge processes were assessed twice additionally, research staff then recorded field notes documenting discussions about facility discharge processes as they related to RED processes. Data were systematically analyzed using thematic analysis to identify recommendations for adapting RED to the SNF setting including (a) rapidly identifying, involving, and preparing family/caregivers to implement a patient focused SNF discharge plan; (b) reconnecting patients quickly to primary care providers; and (c) educating patients at discharge about their target health condition, medications, and impact of changes on other chronic health needs. Limited SNF staff capacity and corporate-level policies limited adoption of some key RED components. Transitional care processes such as RED, developed to avoid discharge problems, can be adapted for SNFs to improve their discharges.
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 Hospital to home transition care is a most stressful period for stroke survivors and their caregivers to learn self-management of stroke-related health conditions and to engage in rehabilitation. Health coaching has been identified as a strategy to enhance self-management of poststroke care at home. However, interventions in this field that are informed by a health coaching framework are scarce. This study will address a gap in research by testing the hypothesis that a nurse-led health coaching intervention can improve health outcomes for stroke survivors and their family caregivers in hospital to home transition care. Methods This is a single-blind, two-arm parallel randomized controlled trial of a nurse-led health coaching program versus routine care situated in two tertiary hospitals in Chongqing, China. Stroke survivors and their primary family caregivers will be recruited together as "participant dyads", and the estimated sample size is 140 (70 in each group). The intervention includes a 12-week nurse-led health coaching program in hospital to home transition care commencing at discharge from the hospital. The primary outcome is changes in self-efficacy of stroke survivors at 12 weeks from the baseline. The secondary outcomes are changes in stroke survivors' and quality of life, functional ability, stroke-related knowledge, the number of adverse events, and unplanned hospital admissions, and caregivers' self-efficacy and caregiver-related burden at 12 weeks from the baseline. The outcomes will be measured at 12 weeks and 24 weeks from the baseline. Discussion This study will examine the effect of nurse-led health coaching on hospital to home transition care for stroke survivors and their caregivers. It is anticipated that findings from this trial will provide research evidence to inform policy, and resource and practice development to improve hospital to home transition care for stroke survivors and their caregivers.
Purpose: This study aims to determine whether the combination of visiting frequency of the family caregiver and frailty status has an additive effect on the incidence of dependency among hospitalized older patients. Methods: We analyzed the prospective cohort data of hospitalized older patients (65 years and older) with internal medical problems. The main outcome showed patients’ dependency from admission to a month after discharge. We investigated the visiting frequency of family caregivers and the frailty status and categorized respondents into 4 groups: group 1, visiting frequency 3–7 times a week and non-frailty; group 2, visiting frequency 0–2 times a week and non-frailty; group 3, visiting frequency 3–7 times a week and frailty; or group 4, visiting frequency 0–2 times a week and frailty. We used the Cox proportional hazards regression to estimate the hazard ratios (HR) and confidence intervals (95% CI) of relationships between the combination of visiting frequency and frailty status, and dependency. Results: A total of 182 participants who completed the follow-up were analyzed. During the follow-up period, 45 participants (24.7%) showed some dependency. The hazards regression showed that the low visiting frequency group with presence of frailty had the most increased dependency, compared to other groups (adjusted HR 8.61 [95% CI 3.38–21.98]). Conclusions: The coexistence of low visiting frequency and the presence of frailty influenced dependency more strongly than each factor alone. These findings suggest that the combination of visiting frequency and frailty status is a useful predictor for future dependency.
The purpose of the current study was to examine the role and activities of family caregivers for older relatives during hospitalization. The Family Care Actions Index was completed by 293 family caregivers of hospitalized older adults. Results indicated that the scope of caregiving activities extended beyond providing care to the patient and included working together with the health care team. Activities requiring interaction with providers, such as care coordination, planning, evaluation, and oversight, were frequently performed by family caregivers. Family caregivers are assuming a greater role during the hospital stay of older relatives. Partnering with family caregivers provides hospital staff an opportunity to improve care, outcomes, and satisfaction.
Background: Families do not fully disengage from care responsibilities following relatives' admissions to residential long-term (RLTC) care settings such as nursing homes. Caregiver stress, depression, or other key outcomes remain stable or sometimes increase following a relative's RLTC entry. Some interventions have attempted to increase family involvement after institutionalization, but few rigorous studies have demonstrated whether these interventions are effective in helping families navigate the potential emotional and psychological upheaval presented by relatives' transitions to RLTC environments. The Residential Care Transition Module (RCTM) provides six formal sessions of consultation (one-to-one and family sessions) over a 4-month period to family caregivers who have admitted a relative to a RLTC setting. Methods: In this embedded mixed methods randomized controlled evaluation, family members who have admitted a cognitively impaired relative to a RLTC setting are randomly assigned to the RCTM (n = 120) or a usual care control condition (n = 120). Primary outcomes include reductions in family members' primary subjective stress and negative mental health outcomes; secondary role strains; and residential care stress. The mixed methods design will allow for an analysis of intervention action mechanisms by "embedding" qualitative components (up to 30 semi-structured interviews) at the conclusion of the 12-month evaluation. Discussion: This evaluation will fill an important clinical and research gap by evaluating a psychosocial intervention designed for families following RLTC admission that determines whether and how the RCTM can help families better navigate the emotional and psychological challenges of residential care transitions. Trial registration: ClinicalTrials.gov (NCT02915939, prospectively registered).
The transition for young adults with disabilities from high school to gainful employment is often difficult. This transition is even harder for students from minority or marginalized backgrounds, including young adults who identify as Latino. As the Latino population increases in the United States, it is imperative that the transition from high school to employment becomes more effective for Latino young adults with disabilities. Using a portion of Bronfenbrenner's Model of Human Development as a framework, we explore the experiences of Spanish-speaking Latina caregivers of young adults with disabilities to better understand the contextual and environmental factors that influence family systems as young adults with disabilities prepare to transition from high school to adulthood. Our findings highlight important factors in the micro-, meso-, exo-, and macrosystems, including the importance of family and community, distrust of authority, and the impact of discrimination. Implications for practice and future research are discussed.
Background and Objectives: Our aim was to create a "storyline" that provides empirical explanation of stakeholders' perspectives underlying the use of patient- and family-reported outcome and experience measures to inform continuity across transitions in care for frail older adults and their family caregivers living at home.; Research Design and Methods: We conducted a meta-narrative synthesis to explore stakeholder perspectives pertaining to use of patient-reported outcome and experience measures (PROMs and PREMs) across micro (patients, family caregivers, and healthcare providers), meso (organizational managers/executives/programs), and macro (decision-/policy-makers) levels in healthcare. Systematic searches identified 9,942 citations of which 40 were included based on full-text screening.; Results: PROMs and PREMS (54 PROMs; 4 PREMs; 1 with PROM and PREM elements; 6 unspecified PROMs) were rarely used to inform continuity across transitions of care and were typically used independently, rarely together (n = 3). Two overarching traditions motivated stakeholders' use. The first significant motivation by diverse stakeholders to use PROMs and PREMs was the desire to restore/support independence and care at home, predominantly at a micro-level. The second motivation to using PROMs and PREMs was to evaluate health services, including cost-effectiveness of programs and hospital discharge (planning); this focus was rarely at a macro-level and more often split between micro- and meso-levels of healthcare.; Discussion and Implications: The motivations underlying stakeholders' use of these tools were distinct, yet synergistic between the goals of person/family-centered care and healthcare system-level goals aimed at efficient use of health services. There is a missed opportunity here for PROMs and PREMs to be used together to inform continuity across transitions of care.
Practice recommendations and policies (e.g., CARE Act) emphasize identifying and training a family caregiver during a patient's hospitalization, but engagement of caregivers is not standard in the USA. To inform caregiver engagement, we highlight (1) the frequency of cancer patient hospitalizations as well as (2) the caregiving characteristics and perceptions of inclusion in care and receipt of training among caregivers for patients who had been hospitalized. To further highlight this group of cancer caregivers, we compare to (1) cancer caregivers for patients who had not been hospitalized; (2) caregivers for patients with a primary condition other than cancer who had been hospitalized; and (3) caregivers for patients with a primary condition other than cancer who had not been hospitalized This secondary analysis is drawn from the National Alliance for Caregiving's (NAC)/AARP Caregiving in the US dataset of unpaid adult (i.e., age 18 and older) caregivers. A higher percentage of the cancer caregivers compared to non-cancer caregivers reported multiple hospitalizations for their care recipient over the previous year. Many cancer caregivers for patients who had been hospitalized reported high objective burden (68%) and that caregiving was highly stressful (49%). A majority of these caregivers (60%) indicated that a healthcare provider had asked them what they needed to assist the patient, while fewer (34%) were asked about their needs to take care of themselves, which, though low, was significantly higher compared to caregivers of patients with a primary condition other than cancer that had been hospitalized. The most frequently endorsed training method for the cancer caregivers of patients who had been hospitalized was "being shown how to do a skill by a qualified person" (67%) followed by "performing a skill while a qualified person watches" (57%). Findings suggest that the oncology context might be more advanced in terms of engaging and supporting caregivers, but that improvement is still needed. Furthermore, these findings identify preferred training methods among those who have been in the hospital context as a caregiver.
Background: Hospitalization for a cancer diagnosis and treatment may trigger stressful experiences for patients and family caregivers.; Objectives: The purpose of this study was to identify patients' and caregivers' perceptions of stressors during hospitalization and evaluate their education needs.; Methods: A descriptive correlational research design was used to determine whether there is any correlation between the stress perceptions of patients and family caregivers and their need for additional education on health-related issues.; Findings: Patients reported experiencing mild to extreme stress for sleep deprivation, pain, tube and line restrictions, and financial issues. In addition to these stressors, family caregivers also perceived that waiting for test results was a main reason for stress in patients. A positive significant correlation was found between the total sample mean stress scores of patients and their need for additional education on health-related issues.
In India, family caregivers (FCs) play a major role in providing care to their older kin during hospitalization. This article explores the challenges encountered by them while providing care in a public hospital. It draws upon empirical insights obtained through interviews with 54 FCs and field observations. The findings show that the hospital was not congenial for FCs and exposes the factors impeding their caregiving role. FC experience was found to be highly complex and fraught with multiple practical challenges during admission, in-hospital treatment, and at discharge. All these had repercussions on various aspects of their own life and well-being like poor health outcomes, financial stress, and social isolation. The article concludes that the needs, preferences, and challenges of the FCs need to be considered to make hospitals conducive for FCs of older people.
Patients with chronic illness often require ongoing support postdischarge. This study evaluated a simple-to-use, mobile health-based program designed to improve postdischarge follow-up via (1) tailored communication to patients using automated calls, (2) structured feedback to informal caregivers, and (3) automated alerts to clinicians about urgent problems. A total of 283 patients with common medical diagnoses, including chronic obstructive pulmonary disease, coronary artery disease, pneumonia, and diabetes, were recruited from a university hospital, a community hospital, and a US Department of Veterans Affairs hospital. All patients identified an informal caregiver or "care partner" (CP) to participate in their postdischarge support. Patient-CP dyads were randomized to the intervention or usual care. Intervention patients received weekly automated assessment and behavior change calls. CPs received structured e-mail feedback. Outpatient clinicians received fax alerts about serious problems. Primary outcomes were 30-day readmission rate and the combined outcome of readmission/emergency department (ED) use. Information about postdischarge outpatient visits, rehospitalizations, and ED encounters was obtained from medical records. Overall, 11.4% of intervention patients and 17.9% of controls were rehospitalized within 30 days postdischarge (hazard ratio [HR]: 0.59; 95% confidence interval [CI]: 0.31–1.11; p = 0.102). Compared to intervention patients with other illnesses, those with pulmonary diagnoses generated the most clinical alerts (p = 0.004). Pulmonary patients in the intervention group showed significantly reduced 30-day risk of rehospitalization relative to controls (HR: 0.31; 95% CI: 0.11–0.87; p = 0.026). The CP intervention did not improve 30-day readmission rates overall, although post hoc analyses suggested that it may be promising among patients with pulmonary diagnoses.
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.
As the population ages and medical therapies advance, more individuals are living in the community with complex health conditions. These individuals, as well as their clinicians, often assume their family members and friends will be capable of, and willing to, provide the caregiving work necessary to continue living at home. There is an ethical problem in this assumption that unpaid community care will be provided by family or friends. Using the Hunt and Ells Patient-Centered Care Ethics Analysis Model for Rehabilitation (2013), this article explores the ethical considerations involved in the hospital discharge planning of a fictional case involving a middle-aged, male stroke patient who is in a strained marriage. We discuss the ethical merits and concerns of the various discharge options. We conclude with recommendations to avoid assumptions that family or friends will provide unpaid care after a hospital discharge. We share advocacy suggestions for improving community supports for caregivers and those with long-term care needs.
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.
Background: Post-intensive care syndrome-family (PICS-F) refers to acute and chronic psychological effects of critical care on family members of patients in intensive care units (ICUs). Evidence suggests that increased distress during the ICU stay increases risk of PICS-F. Sensation Awareness Focused Training (SĀF-T) is a new, promising stress management intervention, but the feasibility of such training during the ICU stay for family caregivers who are acting as the surrogate decision-maker for patients who are undergoing mechanical ventilation is unknown.; Objectives: To assess feasibility and acceptability of SĀF-T to inform a future larger randomized controlled trial.; Methods: This randomized controlled trial of SĀF-T (n = 5) versus a control (n = 5) group was conducted at a level 1 trauma center. Participants assigned to SĀF-T completed 1 session daily for 3 days. Measures included enrollment rate, data completion rate, acceptability of SĀF-T, and symptoms of PICS-F. Scales used included Perceived Stress, Hospital Anxiety and Depression, Impact of Event, and National Institutes of Health Toolbox Emotion Battery.; Results: Mean age was 58 (SD, 12) years; 70% of participants were female. Predetermined feasibility criteria were met in enrollment rate (67%), outcome measures completion rate (> 90%), and SĀF-T acceptability (100% of doses completed during the ICU stay) without adverse events. Stress scores after SĀF-T were significantly lower than scores before SĀF-T (z = -3.5, P = .01).; Conclusions: SĀF-T intervention during the ICU stay is feasible, acceptable, and may improve family caregivers' post-ICU outcomes. Larger clinical trial to assess the effectiveness of SĀF-T in preventing PICS-F seem warranted.
Background: Delayed hospital discharge occurs when patients are medically cleared but remain hospitalized because a suitable care setting is not available. Delayed discharge typically results in reduced levels of treatment, placing patients at risk of functional decline, falls and hospital‐related adverse events. Caregivers often take on an active role in hospital to mitigate these risks. Objective: This scoping review aimed to summarize the literature on patient and caregiver experiences with delayed hospital discharge. Search strategy: Seven electronic databases and grey literature were searched using keywords including alternate level of care, delayed discharge, patients, caregivers and experiences. Inclusion criteria: Included articles met the following criteria: (a) patient or caregiver population 18 years or older; (b) delayed discharge from a hospital setting; (c) included experiences with delayed discharge; (d) peer‐reviewed or grey literature; and (e) published between 1 January 1998 and 16 July 2018. Data extraction: Data were extracted from the seven included articles using Microsoft Excel 2016 to facilitate a thorough analysis and comparison. Main results: Study themes were grouped into five elements of the delayed discharge experience: (1) overall uncertainty; (2) impact of hospital staff and physical environment; (3) mental and physical deterioration; (4) lack of engagement in decision making and need for advocacy; and (5) initial disbelief sometimes followed by reluctant acceptance. Conclusion: This review provides a foundation to guide future research, policies and practices to improve patient and caregiver experiences with delayed hospital discharge, including enhanced communication with patients and families and programmes to reduce deconditioning.
Background: Despite growing attention to the positive meaning from ICU survivorship, little is known about positive experience among family caregivers of ICU survivors.; Objectives: To explore positive aspects of caregiving in family caregivers from patients' ICU admission to 4-month post-ICU discharge.; Methods: A secondary analysis of data from 47 family caregivers of ICU patients who self-reported the measure, Positive Aspects of Caregiving (PAC, 11-item, score range 11-55).; Results: Family caregivers rated their experience as positive overall across the time points (mean 42.42-44.95). Trends of higher mean PAC scores were observed in caregivers who were older than 50 years of age, parent or sibling of patients, not working, had religious background or preference, and had no financial difficulty. Better social support and psychological responses were associated with PAC.; Conclusion: In our sample, family caregivers of ICU survivors rated their caregiving experience as positive during the ICU and post-ICU periods.
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.
Objective To evaluate the effectiveness of family-engaged multidimensional team planning and management for patients with severe stroke and low functional status and to identify factors predictive of improved outcome at 1 month after admission. Methods We retrospectively evaluated 50 patients who underwent family-engaged multidimensional rehabilitation for recovery from severe stroke due to primary unilateral cerebral lesions. The rehabilitation consisted of three phases: comprehensive multidimensional assessment, intensive rehabilitation, and evaluation. Functional Independence Measure (FIM) scores were calculated and used to predict the patients’ status at discharge. Results Although all FIM scores significantly improved after 1 month of rehabilitation, the motor FIM (mFIM) score improved the most (from 20.5±1.0 to 32.6±2.0). The total FIM (tFIM) and mFIM scores continued to improve from the first month to discharge (mean mFIM efficiency, 0.33). The high-efficiency patient group (mFIM efficiency ≥0.19) had a significantly higher discharge-to-home rate (44% vs. 13%), lower frequency of hemispatial neglect, and more severe finger numbness than the low-efficiency patient group (mFIM efficiency <0.19). The regression analyses revealed that besides lower mFIM and cognitive FIM scores at admission, unilateral spatial neglect, systemic comorbidities, and age were predictive of worse 1-month outcomes and tFIM scores (conformity, R²=0.78; predictive power, Akaike information criterion value=202). Conclusion Family-engaged multidimensional team planning and management are useful for patients with severe stroke and low functional status. Furthermore, FIM scores at admission, age, unilateral spatial neglect, and systemic comorbidities should be considered by rehabilitation teams when advising caregivers on the probability of favorable outcomes after rehabilitation.
Importance: Patients hospitalized for chronic obstructive pulmonary disease (COPD) exacerbations have high rehospitalization rates and reduced quality of life.; Objective: To evaluate whether a hospital-initiated program that combined transition and long-term self-management support for patients hospitalized due to COPD and their family caregivers can improve outcomes.; Design, Setting, and Participants: Single-site randomized clinical trial conducted in Baltimore, Maryland, with 240 participants. Participants were patients hospitalized due to COPD, randomized to intervention or usual care, and followed up for 6 months after hospital discharge. Enrollment occurred from March 2015 to May 2016; follow-up ended in December 2016.; Interventions: The intervention (n = 120) involved a comprehensive 3-month program to help patients and their family caregivers with long-term self-management of COPD. It was delivered by nurses with special training on supporting patients with COPD using standardized tools. Usual care (n = 120) included transition support for 30 days after discharge to ensure adherence to discharge plan and connection to outpatient care.; Main Outcomes and Measures: The primary outcome was number of COPD-related acute care events (hospitalizations and emergency department visits) per participant at 6 months. The co-primary outcome was change in participants' health-related quality of life measured by the St George's Respiratory Questionnaire (SGRQ) at 6 months after discharge (score, 0 [best] to 100 [worst]; 4-point difference is clinically meaningful).; Results: Among 240 patients who were randomized (mean [SD] age, 64.9 [9.8] years; 61.7% women), 203 (85%) completed the study. The mean (SD) baseline SGRQ score was 62.3 (18.8) in the intervention group and 63.6 (17.4) in the usual care group. The mean number of COPD-related acute care events per participant at 6 months was 1.40 (95% CI, 1.01-1.79) in the intervention group vs 0.72 (95% CI, 0.45-0.97) in the usual care group (difference, 0.68 [95% CI, 0.22-1.15]; P = .004). The mean change in participants' SGRQ total score at 6 months was 2.81 in the intervention group and -2.69 in the usual care group (adjusted difference, 5.18 [95% CI, -2.15 to 12.51]; P = .11). During the study period, there were 15 deaths (intervention: 8; usual care: 7) and 339 hospitalizations (intervention: 202; usual care: 137).; Conclusions and Relevance: In a single-site randomized clinical trial of patients hospitalized due to COPD, a 3-month program that combined transition and long-term self-management support resulted in significantly greater COPD-related hospitalizations and emergency department visits, without improvement in quality of life. Further research is needed to determine reasons for this unanticipated finding.; Trial Registration: ClinicalTrials.gov Identifier: NCT02036294.;
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.
Objective: to evaluate the relation between sociodemographics factors, stress and burden of care of family caregivers of patients at a psychiatric hospital admission.; Method: quantitative study, with a cross-sectional correlation design. A total of 112 family caregivers participated, older than 18, in a Brazilian psychiatric hospital. A sociodemographic questionnaire was used to collect data, the Zarit Burden Interview and LIPP Adult Stress Symptom Inventory.; Results: burden of care in family caregivers at a psychiatric hospital admission was significantly associated with stress (p=0.000). The psychological symptoms of stress predicted severe burden. Most caregivers presented a moderate or severe burden, with 52.7% in the resistance phase of stress; 66.1% presented psychological symptoms.; Conclusion: results show the alarming situation of caregivers of patients from a psychiatric hospital, evidencing their own vulnerability to illness. Indeed, the during admission in a psychiatric hospital, not only patients need care, but also their caregivers.
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.
OBJECTIVES: To review the evidence evaluating the effectiveness of informal caregiver interventions to facilitate the recovery of older people discharged from the hospital. DESIGN: Systematic review and meta-analysis. SETTING: Hospital and community. METHODS: Published and unpublished randomized and nonrandomized controlled trials assessing the effectiveness of informal caregiver interventions to support the recovery of older people discharged from the hospital were identified (to March 2019). The primary outcome was patient health-related quality of life (HRQOL). Secondary outcomes included patient function, caregiver burden, caregiver HRQOL, psychological distress, adverse events, and health resource use. Studies were critically appraised and meta-analyzed. PARTICIPANTS: Adults who had been admitted to the hospital. RESULTS: A total of 23 studies were eligible (4695 participants). The indication for hospital admission was stroke in 21 trials (91%). Interventions consisted of training and/or skills-based programs, with or without home visits/telephone follow-up. Caregiver interventions for patients following stroke may provide no benefit for patient HRQOL at 12 months (standardized mean difference =.29; 95% confidence interval = -.12 to.69; low-quality evidence). Caregiver interventions demonstrated benefit for caregiver burden and both patient and caregiver anxiety at 12 months. No consistent effect was found on functional outcomes, depression, HRQOL, adverse events, or health resource use measures. CONCLUSIONS: Informal caregivers who receive training to facilitate the recovery of older people discharged from the hospital following stroke may have a lower burden and reduced anxiety at 12 months compared with those who do not. However, the evidence was moderate to low quality. Further study is warranted to explore whether caregiver interventions can be modified for nonstroke populations such as those with hip fracture.
Background: The process of moving patients from a hospital to a home or another care setting, also called transitional care, can lead to unwanted complications and negative outcomes. The term “transitional care” involves a wide range of conditions and services to ensure the continuity of care and prevention of unwanted consequences in vulnerable individuals, who are affected by any changes in care settings or caregivers. Objectives: The purpose of this concept analysis is to clarify the concept of transitional care by considering its application in different studies and its changes over time. Design: A concept analysis. Data sources: Literature from 2008 to 2018 were sought using Medline, PubMed, Google Scholar and Cochrane databases with terms "transitional care", “transitional care” OR "care transitions", “transitional care” AND "nursing", “transitional care” AND "discharge planning”. Review methods: Rodgers' evolutionary concept analysis method was used to clarify the antecedents, attributes and consequences. Results: The 46 eligible articles were fully studied and findings were categorized into antecedents, attributes and consequences. Transitional care antecedents were classified into three categories: patient/family/caregivers related factors, factors related to hospital system (inpatient care), and social factors. The defining attributes include patient-oriented transitional care, transitional care with a hospital-based approach and transitional care with a community-based approach. Consequences categorized into patient-related consequences, family/caregiver-related consequences, and hospital-related consequences. Conclusion: The results of the analysis of the transitional care concept have shown that this concept is not limited to care provided by nurses at discharge, and that its proper implementation requires considering many factors including the status of patients and their families, different members of the healthcare team, and environmental and social conditions and facilities. A proper understanding of transitional care not only specifies the role of care providers, but also creates a basis for designing an evidence based care program.
Objectives: Caregivers of hospitalized older adults experience elevated levels of stress and are at risk of poor health outcomes. There is a lack of screening tools based on self-reported caregiver variables incorporating both protective and risk factors, for early identification of at-risk caregivers. This study reports the development of a caregiver-centric screening tool to identify risk of depression at admission and predicts 3-month risk of depression and quality of life amongst caregivers of older adults with an unplanned admission. Design, Setting and Participants: This prospective cohort study was conducted in the medical wards of a tertiary-care hospital from July 2015 to May 2017. We recruited family caregivers of patients aged 65 years and above who fulfilled the following criteria: a) unplanned admission, b) not residing in nursing homes; and c) requiring assistance in activities of daily living. Measurements: We examined 11 candidate caregiver variables (mastery, burden and nine demographic variables). Risk of depression (score ≥8 on Hospital Anxiety and Depression Scale (HADS-D) depression subscale) was the primary outcome, and was assessed during the index admission. Logistic regression models were used to identify risk factors and risk scores (weights). The total risk scores were then stratified into three risk levels. Predictive validity of the screening tool was assessed using 3-months post-discharge risk of depression and health-related quality of life (HRQoL). Results: The study included 274 caregiver-patient dyads. The mean (SD) age of the caregivers was 59 (10) years with 33.6% caregivers screening positive for risk of depression. The final model comprised three caregiver variables: mastery, burden and education. The total risk scores ranged from 0 to 6 and showed good discrimination (AUC:0.82, 95% CI: 0.77 to 0.87). Caregivers were classified into low-risk (0–1 points), intermediate-risk (2–4 points), and high-risk (5–6 points) groups, with corresponding rates of risk of depression (HADS-D≥8) of 10.7%, 44.6% and 73.3%, during admission. Relative risk rates of the intermediate- and high-risk group using the low-risk group as reference were 4.16 and 6.84 respectively. At 3-months post-discharge, the rates of caregivers at risk of depression or having poor HRQoL also increased corresponding to the three risk levels as per baseline, supporting the predictive validity of the tool. Conclusions/Implications: The caregiver-centric tool is a novel, practical, self-administered, relatively brief caregiver-centric instrument that can be used for rapid screening and stratification of caregivers at risk of depression. Uniquely, the tool comprised of assessment of protective factor (mastery) in addition to risk factors to provide a holistic assessment of the caregiver. It can be incorporated as part of older adults’ admission evaluation so that prompt intervention can be rendered to their at-risk caregivers.
Purpose: This study addressed the experiences of older caregivers of cancer patients in the 2 weeks following a hospital discharge. It sought to understand the challenges they face in providing supportive care to patients at home. Methods: Qualitative descriptive interviews with a narrative approach were conducted with each caregiver at 1 and 2 weeks following the patient’s discharge from the hospital. A thematic analysis approach was used to identify the themes that emerged from the caregiver interviews. Results: Caregivers were primarily Caucasian (77%), were mostly 68 years of age or older (62%), and were primarily caring for a spouse (69%). Three key themes emerged from the qualitative analysis: caregiver and patient wellness are connected, caregivers’ struggle with control issues, and challenges in communication with health professionals. Conclusions: These findings highlight psychosocial changes that caregivers experience over the 2-week time period following hospital discharge. Implications include the need to identify interventions to better prepare caregivers for the post-discharge period.
Background: Although the family caregiver workforce is increasingly diverse, little is known about culturally and linguistically diverse caregivers and patients for whom they care. Caregiver roles include communicating with health care teams on behalf of patients with language barriers.; Objective: Our objective is to describe characteristics and experiences of caregivers for patients with limited English proficiency (LEP) immediately following hospital discharge.; Design: Cross-sectional.; Participants: Primary informal caregivers for Chinese- and Spanish-speaking patients with LEP discharged from a large academic medical center's orthopedic surgery, general surgery, and cardiovascular inpatient floors from June 2012 to August 2013.; Main Measures: Bilingual-bicultural research assistants conducted baseline structured interviews with patients or surrogates in the hospital, and 3 weeks after discharge, gathering demographic and health information. They then interviewed by phone informal caregivers, identified by patients, to determine caregiving experiences.; Key Results: One hundred fifty-eight caregivers were interviewed post-discharge. Two-thirds (69.0%) were adults caring for parents or grandparents, and 20.9% were spouses or partners. Sixty-nine (43.7%) caregivers had LEP themselves, yet only 12% of patients reported having access to professional interpreters at the time discharge instructions were provided. Ninety percent reported performing three or more caregiving roles for the patient (helping at home, helping with medical decisions, helping with medical forms, helping communicate with medical staff, and talking with doctors about medical care). Forty percent reported moderate/high levels of perceived stress (some, most, or all of the time) caring for the patient. Multivariate regression revealed caregivers for Chinese-speaking patients, and those for patients discharged to another hospital were most likely to report moderate/high levels of perceived stress.; Conclusion: Culturally and linguistically diverse caregivers perform multiple roles caring for patients with LEP, often have LEP themselves, and experience notable levels of stress. These results also demonstrate an opportunity to expand the use of professional interpreters at hospital discharge to avoid communication errors.
Background: Active involvement of relatives has the potential to improve postoperative patient outcomes by prevention of complications sensitive to basic care and unplanned readmissions. The aim of this study was to assess the feasibility of a program in which relatives participated in postoperative care.; Methods: A pragmatic feasibility trial conducted at the surgical ward of a University hospital in the Netherlands. Patients undergoing esophageal or pancreatic resection with a relative who was willing and able to participate formed the intervention group (n = 20). A control group (n = 20) received usual postoperative care. The program consisted of the following: (1) information; (2) shared goal setting; (3) task-oriented training; (4) participation in basic care, focusing on mobilization, breathing exercises, cognitive activities and oral hygiene; (5) presence of relatives during ward rounds; and (6) rooming-in. Feasibility criteria were adherence to basic care, caregiver burden, and satisfaction of patients, family, and healthcare professionals.; Results: All participants completed the program. Patients in the intervention group mobilized more (estimated difference for walking 170 meters per day, P = .037, and for sitting 109 minutes per day, P < .001), and showed more adherence to breathing exercises (estimated difference per day 1.4, P = .003), oral hygiene (estimated difference 1.52, P = .001), and cognitive activities (estimated difference 2.6, P < .001). Relatives'Care-Related Quality of Life instrument score did not deteriorate over time (P = .64); 96% of relatives would recommend the program and 92% felt better prepared for discharge. Patients in the intervention group were more satisfied with hospital admission. Healthcare professionals valued the program positively.; Conclusion: This program is feasible and is positively appreciated by patients, family, and healthcare professionals. Patients following the program showed more adherence to basic care activities.
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 experience of nursing home (NH) admission has a significant impact on older adults and their relatives. The aim of the current study is to describe the life experiences of female family caregivers (N = 20) after long-stay NH admission of their relative. A qualitative phenomenological approach was followed with purposeful sampling. Data were collected over 18 months using unstructured interviews, letters, and diaries and were analyzed using systematic text condensation analysis. Three themes emerged: The Value of Experience: Deciding on Admission and Defending One's Criteria; Living on Two Sides of the Same Coin; and Maintaining Contact. Results provide insight into female caregivers' experiences of NH admission, which may improve relationships established between female family caregivers and NH staff and help inform the decisionmaking process.
Background Researchers have shown that hospitalisation can decrease older persons’ ability to manage life at home after hospital discharge. Inadequate practices of discharge can be associated with adverse outcomes and an increased risk of readmission. This review systematically summarises qualitative findings portraying older persons’ experiences adapting to daily life at home after hospital discharge. Methods A metasummary of qualitative findings using Sandelowski and Barroso’s method. Data from 13 studies are included, following specific selection criteria, and categorised into four main themes. Results Four main themes emerged from the material: (1) Experiencing an insecure and unsafe transition, (2) settling into a new situation at home, (3) what would I do without my informal caregiver? and (4) experience of a paternalistic medical model. Conclusions The results emphasise the importance of assessment and planning, information and education, preparation of the home environment, the involvement of the older person and caregivers and supporting self-management in the discharge and follow-up care processes at home. Better communication between older persons, hospital providers and home care providers is needed to improve the coordination of care and facilitate recovery at home. The organisational structure may need to be redefined and reorganised to secure continuity of care and the wellbeing of older persons in transitional care situations.
Objective : To conduct a formative evaluation of a transitional intervention for family caregivers, with assessment of feasibility, acceptability, appropriateness, and potential benefits. Methods : The intervention aimed to provide emotional support, information on community resources, and information and support for development of coping skills for the caregivers of patients aged 65 and older who were to be discharged home from an acute medical hospital admission. We used a one-group, pre- and three-month post-test study design. Results: Ninety-one patient-caregiver dyads were recruited. Of these, 63 caregivers (69%) received all five planned intervention sessions, while 60 (66%) completed the post-test. There were significant reductions in caregiver anxiety and depression following the intervention, and high rates of satisfaction. Discussion: This transitional intervention should be further evaluated, preferably with a control group, either as a stand-alone intervention or as one component of a comprehensive transitional intervention for older patients and their caregivers.
Objective: To investigate the safety and effectiveness of augmenting physiotherapy with family-assisted therapy, to inform a future, fully powered trial.; Design: Parallel pilot randomized controlled trial.; Setting: Transition Care Program.; Participants: Thirty-five older adults with multimorbidity, recently hospitalized, with a mean age of 84.1 years (SD = 6.1 years) and mean Modified Barthel Index of 67.8 units (SD = 19.2 units), and 40 family members.; Interventions: The control group ( n = 18) received usual physiotherapy care. The experimental group ( n = 17) received usual physiotherapy care and family-assisted therapy from a family member trained by a physiotherapist.; Main Measures: Primary outcomes were falls-related self-efficacy measured by the Short Falls Efficacy Scale - International and falls during the intervention period. Secondary outcomes included daily steps, EQ-5D-3L (three-level version of the EuroQoL five-dimensional health-related quality of life questionnaire) and ICECAP-O (ICEpop CAPability measure for Older people), Modified Barthel Index and Modified Caregiver Strain Index.; Results: There were no between-group differences for falls-related self-efficacy. Relative to the control group, the experimental group was observed to have a reduced risk of falling (relative risk = 0.38, 95% confidence interval (CI) = 0.09-1.60) and a reduced falls rate (incidence rate ratio = 0.22, 95% CI = 0.04-1.20) was of borderline statistical significance. The experimental group walked a mean of 944 daily steps more than the control group (95% CI = 139-1748) and had a significant reduction in activity limitation. There were no between-group differences for quality of life or caregiver strain.; Conclusion: Augmenting physiotherapy with family-assisted therapy is feasible for older people transitioning from hospital to the community. A fully powered randomized controlled trial is indicated.
Many people with dementia eventually require residential aged care, frequently preceded by a hospital admission. Family carers often find the process challenging and disempowering, as they are expected to move their family member to residential aged care quickly. This article reports on findings from a small Australian qualitative study focusing on the provision of information, support and resources, and discusses the findings in relation to person-centred care and critical social work. Social workers completed an online survey and participated in focus groups, and carers were interviewed. The research found that carers valued the information, support, and resources provided by social workers and other hospital staff. They needed time to adjust to the dementia diagnosis and wanted a supportive person to talk to about the written information. The social workers wanted an improved approach to the preparation and communication of information, and a more consistent approach to family meetings. There is a need to further develop and articulate the role of hospital social workers in supporting the transition to residential aged care for people with dementia and their family carers. What is valued by family carers is personal support; a team approach from the hospital; up-to-date, concise information; and guidance from a caseworker. Early diagnosis of dementia, more information about the progression of dementia, and advanced care planning would be of assistance.
Approximately 5% of the UK population live with serious mental health problems. Data show that informal caregivers of people with mental illness provide care for the highest number of hours compared to other illness and the economic cost of this care is highest in the UK when compared internationally. People living with serious mental health problems make transitions between different intensities of service as their needs fluctuate, including referral, admission, transfer or discharge. Although caregiving is associated with both stress and positive reward, service transitions are particularly associated with increased stress. This review aimed to investigate what is known about the experiences of informal caregivers during mental health service transitions. An integrative qualitative synthesis was conducted following searches in six bibliographic databases and of the grey literature. Studies published in English between 2001 and 2017 were included if the study focus was on serious mental health problems, the experiences of caregivers and service transitions. Eleven studies were included, appraised using the Mixed Methods Appraisal Tool and synthesised, resulting in four themes: (a) Caregiver information, (b) Caregiver involvement in decisions about care and treatment, (c) Accessing services, (d) Being a caregiver. Caregivers' experiences were similar during transitions to their usual caregiving role but they faced more challenges and their experiences were amplified. Concerns about confidentiality created barriers to information sharing. Continuity of professionals across transitions was helpful. Caregivers struggled to deal with their own conflicting emotions and with the behaviours of the person yet rarely received help. The review findings point to a need for continuity of professionals across service transitions, co-designed and delivered training for professionals and caregivers about information sharing, greater understanding of barriers to implementation of family interventions and interventions that address emotional needs of caregivers.
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.
Background: Globally, one-third of the 15 million people with stroke suffer permanent physical, cognitive, and emotional impairment. Because of traditional Chinese culture and the limited development of the primary healthcare system, most stroke survivors are cared for and live with their family after hospital discharge. However, previous literature shows a lack of qualitative studies on family caregivers' experience of caring for their relatives in China.; Objectives: The aim of this study was to explore the experience of family caregivers taking care of stroke survivors in China.; Methods: An explorative design was used wherein qualitative semi-structured interviews were conducted with family caregivers in China. Family caregivers were selected from one city and three communities using a purposive sampling method until no new data were generated (n = 26). A thematic analysis was used for the data analysis in this study.; Findings: Family caregivers' experience was described as living on the edge, which pulled their lives in multiple directions, created an unstable situation, and reduced their well-being and health. The participants believed they had total responsibility and felt that this was expected from both themselves and society. Little external understanding and insufficient support was emphasised, resulting in the caregivers feeling all alone, drained by caring, and like prisoners in their own lives. The family caregivers had to face all of the family events and make all of the decisions by themselves. They expressed love for their family members with stroke, but this was often overshadowed by feelings of sadness, depression, sensitivity, and anger. This resulted in an inability to see how things could improve and in the family caregivers being uncertain about the future.; Conclusion: All of these findings increased understanding and added knowledge of this topic that has been seldom studied in China. Healthcare authorities and professionals should recognise and understand the lives and situations of family caregivers since their relatives had a stroke to further identify their difficulties and needs. Appropriate and effective support, both from government and society, should be planned and implemented for family caregivers to relieve them from caring for their relatives with stroke and maintaining the quality of their own lives.
In numerous countries, lay (family) caregivers are the primary providers of care for community-dwelling patients with a tracheostomy.; Purpose: The purpose of this descriptive study was to determine health care practices and the burden on family caregivers for patients with a tracheostomy living at home.; Methods: The research population included 50 caregivers (average age 55.60 ± 1.39 years; 25 [50%] female) who provided care to 50 patients (average age 63.50 ± 1.72 years; 35 [70%] male) who were discharged from the otorhinolaryngology clinic of an education and research hospital in Turkey. Patient and caregiver characteristic data and tracheostomy care practices were collected via face-to-face interviews between caregivers and researchers using paper-and-pencil questionnaires. The 18-item Zarit Caregiver Burden Interview also was completed; responses to statements are rated on a scale of 0-4, where 0 = never, 1 = rarely, 2 = sometimes, 3 = often, and 4 = almost always. Total scale scores range from 0 to 88; higher scores indicate greater burden. Data were transferred into a statistical analysis program.; Results: The mean score for the Zarit Caregiver Burden Scale was 42.44 ± 1.93, inferring caregivers were moderately burdened. Caregiver burden scores were significantly higher among female caregivers, caregivers without health insurance, caregivers requiring help, caregivers with chronic illness, more daily care time (hours), and duration of total care (months). Patient burden scores were significantly higher among persons requiring provision of daily nebulization and oxygen therapy, external cannula cleaning, and daily patient care.; Conclusion: This study illuminates the burdens faced by lay/family caregivers of patients with a tracheostomy and identifies for community health clinicians the challenges, care requirements at home, and burden of family caregivers that must be addressed.
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.
Kennedy talks about the importance of family caregivers. Among other things, making sure that family caregivers are prepared prior to discharge in understanding the family members diagnosis and what it means for ongoing care, how to provide care, and what changes signal the need for professional intervention.
Background/objective: Chronic emotional distress (e.g., depression, anxiety, post-traumatic stress) is common after stroke and interdependent between patients and their informal caregivers. We measured stroke survivors', caregivers', and neurocritical care nurses' views of primary drivers of distress during the stroke experience, and needs and preferences for the structure, topics, mode of delivery, and timing of an intervention to promote emotional recovery.; Methods: We conducted semi-structured interviews with 24 patient-caregiver dyads within the Neuroscience Intensive Care Unit (Neuro-ICU). Additionally, we conducted two focus groups with 15 nurses. Interviews and focus groups were audio-recorded, transcribed, and coded using NVivo 11 (QSR International) software.; Results and Conclusions: The challenges and impacts of stroke most commonly reported by dyads were: uncertainty about future health, fear of recurrent strokes, negative emotions, and role changes post-stroke. Dyads and nurses agreed that resiliency skills such as mindfulness/focusing on the present, problem solving, gratitude/optimism, self-care, interpersonal communication and developing a supportive team of family, friends, and medical staff are beneficial to optimize recovery. The potential barrier to intervention delivery was accessibility, due to challenges of time and travel to appointments. Participants agreed that starting the intervention at hospitalization and continuing via live video after discharge is an ideal delivery modality. Stroke survivors, caregivers, and Neuro-ICU nurses believe that a resiliency skills-based intervention to prevent chronic emotional distress is necessary and urgent. This qualitative study provides valuable information on the challenges faced by dyads, intervention topics to prioritize, and strategies to maximize feasibility, acceptability, and effect.
The ageing global population has seen increasing numbers of older people living with chronic health problems, declining function, and frailty. As older people seek to live out their years at home, family members, friends and neighbours (informal caregivers) are increasingly relied upon for support. Moreover, pressured health systems and shorter hospital length of stay mean that informal caregivers can find themselves supporting the older person who is still unwell after discharge. The Further Enabling Care at Home (FECH) program was developed as a nursing outreach intervention designed to systematically address support needs of family caregivers of older people after hospital discharge to sustain their home-based caregiving. The objective of this study was to explore the experiences of informal caregivers who participated in the FECH program after an older family member’s discharge from hospital.
Background: Family caregivers provide the foundation for long-term home care of stroke survivors. The overwhelming stress associated with caregiving hinders the ability of family caregivers to utilise their internal and external resources to cope with this situation, thereby placing their own health at risk. We conducted a randomised controlled trial of a strength-oriented psychoeducational programme on conventional stroke rehabilitation for family caregivers. Objectives: To evaluate the effectiveness of a strength-oriented psychoeducational programme on the caregiving competence, problem-solving coping abilities, caregiver’s depressive symptoms, caregiving burden and resources (family functioning, social support) and physical health (such as caregiving-related injury), as well as potential placement of stroke survivors. Design: A prospective multi-centre and single-blinded randomised controlled trial stratified by survivors’ history of stroke. Setting and participants: Adult stroke patients and their family caregivers were recruited from the medical wards of a regional acute and two rehabilitation hospitals in the Eastern New Territories of Hong Kong. Methods: The design of the trial was based on the relational/problem-solving model. Family caregivers of stroke survivors who had been admitted to the study hospitals completed a set of questionnaires before randomisation, immediately, one- and three-months post-intervention. The control group received usual care, whereas the intervention group received an additional 26-week strength-oriented psychoeducational programme (two structured individual face-to-face pre-discharge education sessions on stroke and its associated caregiving skills and six biweekly post-discharge telephone-based problem-solving coping skills training sessions). Data were analysed using the generalized estimating equation and multiple regression models and chi-square tests. Results: We recruited 128 caregiver–survivor dyads. The intervention group demonstrated significantly greater improvements throughout the study (p < 0.01) in terms of caregiving competence, problem-solving coping abilities and social support satisfaction. This group also displayed significantly greater improvements in terms of family functioning (p < 0.05) at one-month post-intervention, an increased number of social support (p < 0.001) and a lower level of burden at three-month post-intervention. However, there was no significant effect on enabling stroke survivors to remain in their home. Post-hoc analysis showed a significant and indirect effect of problem-solving coping abilities, which suggested its mediating effect on caregiving competence of stroke caregivers. Conclusions: Findings suggest that incorporating a strength-oriented psychoeducational programme into the existing stroke rehabilitation protocol can foster a healthy transition to caregiving among family members of stroke survivors.
Background: there are many people with advanced cancer who are cared for in the community, though little is known about patients' and family members' lived experiences during discharge from hospital to home. Objectives: to describe the experiences of the patient-family caregiver dyad during the transition from hospital to home at a National Cancer Institute in Colombia. Methods: a descriptive phenomenological approach was taken for this study. Results: Forty-one nominal codes emerged, comprising seven themes that describe the experience of the individual in palliative care and their family caregiver during the transition from hospital to home care. Conclusions: the patient-family caregiver dyad have to deal with symptoms while being confronted with the prognosis and progression of the disease at home. The economic costs in acquiring supplies needed for proper care provision are considerable. In addition there are administrative fees from consultations and accessing the health services. Emotional and spiritual support for the dyad is required.
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.
Traumatic injury frequently leads to an abrupt change in physical and psychological functioning; informal caregivers play a significant role in the recovery process in the hospital and at home. The purpose of this study was to describe the range of stressors and burdens experienced by orthopedic trauma family caregivers in the acute care setting, as well as responses and strategies employed. Qualitative, in-depth interviews were conducted in the hospital with 12 family caregivers of severely injured orthopedic trauma patients. Interviews were audiotaped, transcribed, and analyzed to identify the range of experiences and common themes. Data were organized into 4 categories: stressors and needs; barriers; resources; and response. Stressors and barriers included the confusion and turmoil of life in the hospital, exposure to tragedy, difficulty obtaining and understanding information, and a sense that the family was not considered an integral part of the care plan. Factors influencing caregiver coping included access to the patient, provider communication, caregiver internal and external resources, and the presence of staff assisting in negotiation of the complex and unfamiliar hospital system. Understanding the caregiver experience enables nursing providers to build trust and offer effective support and guidance; caregiver-centered systems of information from admission to discharge may facilitate adaptation and improved caregiving.
The aim of this study was interpret the existential construct of family caring following Acute Coronary Syndrome. Family support is known to have a positive impact on recovery and adjustment after cardiac events. Few studies provide philosophically-based, interpretative explorations of carer experience following a spouse's ischaemic event. As carer experiences, behaviours and meaning-making may impact on the quality of the support they provide to patients, further understanding could improve both patient outcomes and family experience. Fourteen spouses of people experiencing Acute Coronary Syndrome in Sydney, Australia were engaged in a single, semi-structured interview. Interviews were audio-recorded and transcribed verbatim. Data were analysed using hermeneutic interpretation within a Heideggerian phenomenological framework. Acute Coronary Syndrome disrupts lived temporality, and the projected potential for carers' being-alongside. Carers experienced an existential uncertainty that arose from difficulty in diagnosis, and situated fear as an attuned, being-towards-death. They constructed protective strategies to insulate their partner and themselves from further stress and risk, however, unclear boundaries for protection heightened carer anxiety. The existential structure of care included one of two possible Heideggerian modes: leaping-in care was a dominating mode that required a high level of carer vigilance leaping-ahead care was a metaphorical walking alongside, as carers gave back control, freeing opportunities for the person to 'own' care. Supporting carers through the intensive phase of leaping-in care, and equipping them for informed leaping-ahead care should be a focus in both the acute and post-discharge care phases.
Objective: To evaluate patient post-intensive care syndrome (PICS-P) and caregiver burden 3 months after discharge from the Intensive Care Unit (ICU) and determine the impact of different components of PICS-P upon caregiver burden. Design: A prospective observational study was conducted over 26 months (January 2013–February 2015). Setting: Medical-surgical ICU and follow-up consultation in Portugal. Patients or participants: Patients discharged after a minimum of 2 days in the ICU. Caregiver inclusion criteria: not paid, written and spoken Portuguese, and agreement to participate in the study. Main variables of interest: In ICU: Patient gender, age, severity of illness (SAPS II) and length of ICU stay. At 3 months caregiver burden, physical (reduced mobility, weakness acquired in the ICU) and psychological components of PICS (anxiety, depression, post-traumatic stress disorder). Results: A total of 168 caregivers completed the survey (response rate of 69%). A low degree of overburden was reported by 34.5% of caregivers, while 15.5% showed moderate to high levels of overburden. Patient anxiety and depression 3 months after ICU discharge significantly influenced the presence of caregiver burden (p=0.030 vs p=0.008). When physical components of PICS-P were evaluated, no influence on caregiver burden was observed. Patient demographics, severity of illness and length of stay also failed to influence caregiver burden. Conclusions: The presence of psychological components of PICS-P 3 months after ICU seems to have a negative impact upon caregiver burden. On the other hand, physical problems showed no important impact upon caregiver overburden.
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 of the Study: To describe skilled nursing facility (SNF) nurses’ perspectives on the experiences and needs of persons with dementia (PwD) during hospital-to-SNF transitions and to identify factors related to the quality of these transitions. Design and Methods: Grounded dimensional analysis study using individual and focus group interviews with nurses (N = 40) from 11 SNFs. Results: Hospital-to-SNF transitions were largely described as distressing for PwD and their caregivers and dominated by dementia-related behavioral symptoms that were perceived as being purposely under-communicated by hospital personnel in discharge communications. SNF nurses described PwD as having unique transitional care needs, which primarily involved needing additional discharge preplanning to enable preparation of a tailored behavioral/social care plan and physical environment prior to transfer. SNF nurses identified inaccurate/limited hospital discharge communication regarding behavioral symptoms, short discharge timeframes, and limited nursing control over SNF admission decisions as factors that contributed to poorer-quality transitions producing increased risk for resident harm, rehospitalization, and negative resident/caregiver experiences. Engaged caregivers throughout the transition and the presence of high-quality discharge communication were identified as factors that improved the quality of transitions for PwD. Implications: Findings from this study provide important insight into factors that may influence transitional care quality during this highly vulnerable transition. Additional research is needed to explore the association between these factors and transitional care outcomes such as rehospitalization and caregiver stress. Future work should also explore strategies to improve inter-setting communication and care coordination for PwD exhibiting challenging behavioral symptoms.
Purpose: This qualitative study explored how stroke survivors' spouses described their own self-management, their partner's self-management post-stroke and how they had been supported in developing self-management.; Method: Focus group interviews were conducted with 33 spouses of stroke survivors 34-79 years of age. A constant comparative framework was used for the analysis.; Result: Stroke also affected the spouses, gave changes in their relationships and challenged in being a caregiver beside being partner. They felt burdened, lonely, sad, and guilty. To manage themselves, many participants created time for themselves. For most spouses, self-management was connoted with co-management because they perceived their partners were not able to manage themselves completely post-stroke. They often felt lost after their partners came home and reported that they learned how to coach their partners post-stroke by trial and error, without much professional support. Moreover, many spouses experienced informal peer support as helpful.; Conclusion: Spouses of stroke survivors should be involved as soon as possible in stroke-rehabilitation and continue at home post-discharge. In addition to enhancing the spouses' skills in caregiving and supporting self-management, stroke survivors' spouses also need support in their own emotional and role management. Moreover, peers can play a role in rehabilitation post-stroke. Implications for Rehabilitation Spouses of stroke survivors should be considered as full participants of stroke-self-management programs to enhance their skills in caregiving and supporting self-management. Stroke survivors' spouses need support in their own emotional and role management. Peer support can play a role in rehabilitation post-stroke for stroke survivors as well as their spouses.
Background: Older people with multi-morbidity are major users of healthcare and are often discharged from hospital with ongoing care needs. This care is frequently provided by informal caregivers and the time immediately after discharge is challenging for caregivers with new and/or additional tasks, resulting in anxiety and stress.; Aim: This study aimed to describe mental health, with particular reference to anxiety and depression and reactions to caregiving, and to investigate any associations between the two, in next of kin of older people with multi-morbidity after hospitalisation. It also aimed to explore the association between the demographic characteristics of the study group and mental health and reactions to caregiving.; Methods: This was a cross-sectional questionnaire study using the Hospital Anxiety and Depression Scale and the Caregiver Reaction Assessment. The study group consisted of 345 next of kin of older people (65+) with multi-morbidity discharged home from 13 medical wards in Sweden. Data were analysed using descriptive and analytical statistics. To identify whether reactions to caregiving and next of kin characteristics were associated with anxiety and depression, a univariate logistic regression analysis was performed.; Results: More than one quarter of respondents showed severe anxiety and nearly one in 10 had severe depressive symptoms. The frequencies of anxiety and depression increased significantly with increased negative reactions to caregiving and decreased significantly with positive reactions to caregiving. Regarding caregiving reactions, the scores were highest for the positive domain Caregiver esteem, followed by the negative domain Impact on health. Women scored significantly higher than men on Impact on health and spouses scored highest for Impact on schedule and Caregiver esteem.; Conclusions: Nurses and other healthcare professionals may need to provide additional support to informal caregivers before and after discharging older people with significant care needs from hospital. This might include person-centred information, education and training.
Aims: This study aimed at evaluating whether training on practical skills involved in providing care reduces the burden experienced by informal caregivers and improves their general health condition.; Background: A substantial number of informal caregivers lack skills to deliver poststroke assistance to older people after hospital discharge, which leads to burden situations as well as mental and physical health deterioration of the former.; Design: A quasi-experimental design.; Methods: This study involved 174 informal caregivers of older people who overcame a stroke. The control group (N = 89) received the usual type of care delivered in healthcare units. The experimental group (N = 85) adopted the InCARE programme for 1 week (T0), 1 month (T1) and 3 (T2) months and received telephone support by counselling caregivers on the subsequent 3rd, 6th, 8th and 10th weeks to hospital discharge. It aimed at facilitating the caregiver's adjustment to the demands of a poststroke stage and at increasing knowledge and practical skills to support the decision-making. Data collection occurred between February-December 2014 at the Community Home Care Services in northern Portugal.; Results: The experimental group obtained significantly better results regarding practical skills as well as lower burden levels and a better general mental health condition when compared with the control group 1 (T1) and 3 (T2) months after intervention.; Conclusion: Findings suggest that our programme improved practical skills, helped reduce burden levels with better scores and improvement regarding general mental health condition of informal caregivers.
Objectives: To determine the effect of integrating informal caregivers into discharge planning on postdischarge cost and resource use in older adults.; Design: A systematic review and metaanalysis of randomized controlled trials that examine the effect of discharge planning with caregiver integration begun before discharge on healthcare cost and resource use outcomes. MEDLINE, EMBASE, and the Cochrane Library databases were searched for all English-language articles published between 1990 and April 2016.; Setting: Hospital or skilled nursing facility.; Participants: Older adults with informal caregivers discharged to a community setting.; Measurements: Readmission rates, length of and time to post-discharge rehospitalizations, costs of postdischarge care.; Results: Of 10,715 abstracts identified, 15 studies met the inclusion criteria. Eleven studies provided sufficient detail to calculate readmission rates for treatment and control participants. Discharge planning interventions with caregiver integration were associated with a 25% fewer readmissions at 90 days (relative risk (RR) = 0.75, 95% confidence interval (CI) = 0.62-0.91) and 24% fewer readmissions at 180 days (RR = 0.76, 95% CI = 0.64-0.90). The majority of studies reported statistically significant shorter time to readmission, shorter rehospitalization, and lower costs of postdischarge care among discharge planning interventions with caregiver integration.; Conclusion: For older adults discharged to a community setting, the integration of caregivers into the discharge planning process reduces the risk of hospital readmission.
Medical devices, or instruments or tools to manage disease, are increasingly used in the home, yet there have been limited evaluations of how older adults and caregivers safely use these devices. This study concerns a qualitative evaluation of (1) barriers and facilitators of appropriate use, and (2) outcomes of inappropriate use, among older adults at the transition from hospital to home with skilled home health care (SHHC). Guided by a human factors engineering work system model, the authors (1) conducted direct observations with contextual inquiry of the start-of-care or resumption-of-care SHHC provider visit, and (2) semi-structured interviews with 24 older adults and their informal caregivers, and 39 SHHC providers and administrators. Five requirements for the appropriate use of home medical devices were identified. A systems approach integrating the hospital with the SHHC agency is needed to make the use of home medical devices safer.
Purpose: To determine the profile of the main informal caregivers, the evolution of the caregiver burden, and the influencing factors of caregiver burden at 1-year after hip fracture surgery.; Methods: In this prospective cohort study, a total of 172 informal caregivers of patients were interviewed at four points during 1 year following hip fracture surgery in a regional hospital in southern Spain. The perceived caregiver burden was assessed using the Caregiver Strain Index (0-13 points).; Results: The mean (Standard Deviation) age of the 172 caregivers was 56 (13) years, of which 133 (77%) were woman and 94 (55%) were daughters of the patient. Seventy-nine of the 172 (46%) caregivers perceived a high level of burden (≥ 7 points on the Caregiver Strain Index) at the hospital. The corresponding numbers with perceived high level of burden at 1-month, 3-months, and 1-year were 87 (50%), 61 (36%), and 45 (26%) caregivers. A low pre-fracture functional status, post-operative complications, older age of patients, and younger age of caregivers negatively influence caregiver burden at 1-year.; Conclusions: The main caregiver is predominantly female and is most often the daughter of the patient. New treatment strategies such as the support and training of the caregivers in patient handling during hospital stay could be carried out to reduce caregiver burden. Implications for rehabilitation The main caregiver of a hip fracture patient is usually a woman who is the daughter of the patient, and reducing her burden of care should be included as one of the objectives of rehabilitation treatment. The caregivers of hip fracture patients must be considered as part of the treatment during the patient's recovery period, and patient handling training should be provided to the caregivers of hip fracture patients during the hospital stay to prepare the process of going back home. The caregivers of older patients, those with a low pre-fracture functional level, and of those who suffered post-operative complications, should receive more attention prior to hospital discharge and receive more assistance at home to reduce caregiver burden.
Aims and objectives: To identify barriers and facilitators to engagement of people with dementia and family carers in planning for discharge from hospital. Background: Hospital discharge can be particularly challenging for older people with dementia. To assist in the development of bespoke discharge processes that address the unique needs of older people with dementia, an integrated review of the literature was undertaken. Design and methods: A four‐stage integrative review framework guided the review. Three search strategies were employed: a computerised database search, a hand search of reference lists and forward citation searching. Paired members of the research team reviewed eligible full‐text papers. The methodological quality of each paper was assessed using the Mixed‐Methods Assessment Tool, followed by data extraction and completion of summary tables. Within and across study analysis and synthesis of study findings was undertaken using thematic synthesis. Results: Fifteen papers were included in the review. Most identified barriers to collaborative discharge processes related to distributed responsibility for discharge, risk averse approaches to discharge, limited family carer confidence, and limited validation of assumptions about family competency to manage at home. Facilitators included supported clinician and family carer engagement, and maintaining independence for activities of daily living. Relevance to clinical practice: Reflective analysis of discharge decisions, focused on risk and possible risk aversion, can assist teams to evaluate the quality of their discharge decisions. The use of formal communication strategies such as a patient/family‐held journal of the hospital experience and a structured family meeting early in the hospital admission can enhance family engagement in discharge planning. Prevention of functional and cognitive decline is emerging as critical to improving hospital discharge outcomes.
Background Health and social care services are under strain providing care in the community particularly at hospital discharge. Patient and carer experiences can inform and shape services. Objective To develop service user-led recommendations enabling smooth transition for people living with memory loss from acute hospital to community. Design Lead and co-researchers conducted semi-structured interviews with 15 pairs of carers and patients with memory loss at discharge, 6 and 12 weeks post-discharge and one semi-structured interview with health and social care professionals and Admiral Nurses. Framework analysis was guided by co-researchers. Two focus groups of study participants, facilitated by co-researchers, met to shape and finalize recommendations. Setting and participants Recruitment took place in acute hospitals in two National Health Service (NHS) Trusts in England. Patients were aged 65 and over, with memory loss, an in-patient for at least 1 week returning to the community, who had a carer consenting to be in the study. Results Poor delivery of services caused considerable stress to some study families living with memory loss. Three key recommendations included a need for a written, mutually agreed discharge plan, a named coordinator of services, and improved domiciliary care services. Discussion and conclusions Vulnerable patients with memory loss find coming out of hospital after an extended period a stressful experience. The SHARED study contributes to understanding the hospital discharge process through the eyes of the patient and carer living with memory loss and has the potential to contribute to more efficient use of resources and to improving health outcomes in communities.
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: 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.
Background: Carer factors prevent patients achieving timely and appropriate hospital discharge. There is a lack of research into interventions to support carers at hospital discharge. Aim: To explore whether and how family carers are currently supported during patient discharge at end of life; to assess perceived benefits, acceptability and feasibility of using The Carer Support Needs Assessment Tool (CSNAT) Approach in the hospital setting to support carers. Design: Qualitative. Setting/participants: Three National Health Service Trusts in England: focus groups with 40 hospital and community-based practitioners and 22 carer interviews about experiences of carer support during hospital discharge and views of The CSNAT Approach. Two workshops brought together 14 practitioners and five carers to discuss implementation issues. Framework analysis was conducted. Results: Current barriers to supporting carers at hospital discharge were an organisational focus on patients' needs, what practitioners perceived as carers' often 'unrealistic expectations' of end-of-life caregiving at home and lack of awareness of patients' end-of-life situation. The CSNAT Approach was viewed as enabling carer support and addressing difficulties of discussing the realities of supporting someone at home towards end of life. Implementation in hospital required organisational considerations of practitioner workload and training. To enhance carer support, a two-stage process of assessment and support (hospital with community follow-up) was suggested using the CSNAT as a carer-held record to manage the transition. Conclusion: This study identifies a novel intervention, which expands the focus of discharge planning to include assessment of carers' support needs at transition, potentially preventing breakdown of care at home and patient readmissions to hospital.
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.
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.
In this cross-sectional study, we evaluated the quality of discharge documentation for stroke patients discharged home. Participants were stroke patients discharged from a regional tertiary acute and rehabilitation hospital in Australia from 2014 to 2015. Compliance with expected discharge documentation and its relationship with readmission was measured using an audit instrument for stroke patients (n = 54), and a post-discharge survey of carers was conducted. There were deficits in the documentation of the mechanism of stroke (70%), functional assessments (58%), pending test results (39%), types of support services required after discharge (35%), and patient/carer meetings with the multi-disciplinary stroke team (20%). Readmission was associated with lower compliance scores for information provided to patients or their carer. The survey results suggested that carer burden was high for carers of stroke patients discharged home. Documentation of carer/family meetings with the stroke team, functional assessments, medications, and adequate support services needs to be improved. General practitioners and carers need this information, so that they can address the post-discharge needs of these vulnerable patients.; © 2017 John Wiley & Sons Australia, Ltd.
Aims and Objectives: To describe the family caregivers' caregiving experience for stroke survivors and to identify the determinants of caregiving burden over 6 months.; Background: Sociocultural factors influence the caregiving experience in China. However, little is known about the dynamic changes occurring in Chinese caregivers' burden and its determinants.; Design: This is a prospective longitudinal study.; Methods: A total of 328 participants (164 stroke survivors and 164 family caregivers) from the neurological units of three hospitals in Shiyan were examined during a 6-month period at 1-2 days before discharge (T1) and 3 weeks (T2), 3 months (T3) and 6 months (T4) postdischarge using the Short Portable Mental Status Questionnaire, Multidimensional Scale of Perceived Social Support, Caregiver Strain Index and the Center for Epidemiological Studies-Depression.; Results: Of the 209 dyads recruited, 164 completed all data collection phases, with 69% of the female caregivers aged 56.04 (SD = 4.0; range = 22-80) years. Caregivers reported higher mean burden at T1 (7.35 ± 2.9) but slightly decreased over time at T4 (6.34 ± 3.4), had borderline mean depressive symptoms only in T1 (9.71 ± 3.2) and T2 (9.02 ± 3.8) and had moderate mean social support throughout the 6-month period. Determinants of caregiving burden were stroke survivors' physical dependence, caregivers' age, caring hours per day, depressive symptoms and social support, which explained 46.8%-55.0% of the total variance (p < .05).; Conclusion: Caregivers' burden remains a serious problem in the first 6 months. It is an increasing hazard, especially for those at an advanced age who have depressive symptoms and care for severely dependent stroke survivors requiring more caring hours.; Relevance To Clinical Practice: Nurses need to be aware of and understand caregivers' cultural values and beliefs about family obligations when considering an intervention to support them in their role at home.; © 2017 John Wiley & Sons Ltd.
Background: Chronic Obstructive Pulmonary Disease (COPD) is a leading cause of hospitalizations. Interventional studies focusing on the hospital-to-home transition for COPD patients are few. In the BREATHE (Better Respiratory Education and Treatment Help Empower) study, we developed and tested a patient and family-centered transitional care program that helps prepare hospitalized COPD patients and their family caregivers to manage COPD at home.; Methods: In the study's initial phase, we co-developed the BREATHE transitional care program with COPD patients, family-caregivers, and stakeholders. The program offers tailored services to address individual patients' needs and priorities at the hospital and for 3 months post discharge. We tested the program in a single-blinded RCT with 240 COPD patients who were randomized to receive the program or 'usual care'. Program participants were offered the opportunity to invite a family caregiver, if available, to enroll with them into the study. The primary outcomes were the combined number of COPD-related hospitalizations and Emergency Department (ED) visits per participant at 6 months post discharge, and the change in health-related quality of life over the 6months study period. Other measures include 'all cause' hospitalizations and ED visits; patient activation; self-efficacy; and, self-care behaviors. Discussion: Unlike 1-month transitional care programs that focus on patients' post-acute care needs, the BREATHE program helps hospitalized COPD patients manage the post discharge period as well as prepare them for long term self-management of COPD. If proven effective, this program may offer a timely solution for hospitals in their attempts to reduce COPD rehospitalizations. Copyright © 2017 Elsevier Inc. All rights reserved.
This article is the fifth 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 fifth video can be accessed at http://links.lww.com/AJN/A79
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.