The following resources examine training for carers, and involvement of carers in training of care providers and others.
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Objectives: Family caregivers of people with dementia (PWD) often feel powerless and experience decreased well-being. Our aim was to develop an intervention program based on the caregiver empowerment model (CEM) and apply it with the Korean caregivers to evaluate its effects. Design and Sample: The study population comprised 115 family caregivers (experimental group, n = 35, control group 1, n = 40, control group 2, n = 40). Methods: Using an experimental design with two control groups. The experimental group received a 12-week program including intensive counseling, education, and telephone calls. The control group 1 (CG1) received usual service. The control group 2 (CG2) was provided with a handbook during the first week. A mixed-effects model was used to clarify longitudinal changes in participants' outcomes. Results: The experimental group showed significantly increased caregiving appraisal (effect size in CG1 = −7.25; CG2 = −5.63), caregiving attitude (CG1 = −21.47; CG2 = −17.79), self-efficacy (CG1 = −12.42; CG2 = −10.12), and well-being (CG1 = −4.33; CG2 = −2.35) after the program. Conclusions: The empowerment program can be used to promote family caregivers' positive adaptation and to help caregivers who care for PWD to effectively cope with their problems.
Communication training effectiveness for health care providers has been well documented, however patient and caregiver training may present a prime opportunity to mitigate communication challenges that provider-only training cannot. The aim of this study is to describe the multi-step process of adapting a national, provider, health communication training program (COMFORT) for use with underserved patients and caregivers who (1) are not regular consumers within health care systems and/or (2) do not have ready access to providers. We examine three iterations of training feedback for implementation in future training.
Background and Objectives Effective community-based programs to maintain health and well-being of adults with dementia are needed. This article describes the translation, implementation, and effectiveness of a multicomponent exercise plus behavioral/psychosocial intervention (Reducing Disability in Alzheimer's Disease-NorthWest [RDAD-NW]) conducted by staff in regional Area Agencies on Aging (AAAs). Research Design and Methods Staggered multiple baseline design was used; 10 AAAs, 20 case managers, and 255 community-residing persons with dementia (PWDs), and family caregivers were enrolled. RDAD-NW was conducted in-home over 6 weeks with aerobic/endurance, strength, and balance/flexibility exercises, dementia education, training to increase pleasant events, and activator-behavior-consequence problem-solving approach. Outcomes included case manager treatment fidelity, and caregiver/PWD physical activity, restricted activity days, physical functioning, quality of life, and affect. Results RDAD-NW was successfully translated and implemented by AAA agency staff through their usual service provision mechanisms. Staff responded positively and delivered the program with a high degree of fidelity. Caregiver/PWD dyads also responded favorably engaging in both exercise and behavioral/psychosocial portions of the program. A total of 207 dyads (81%) completed the intervention and 140 (55%) completed the 13-month follow-up. PWD physical activity increased significantly pre- to posttreatment (p < .001, ES = .54), and 13 months (p < .01, ES = .21). Quality of life of PWD increased significantly pre- to posttreatment (p < .001, ES = .29); caregiver depression improved pre- to posttreatment (p = .01, ES = −.18). Discussion and Implications RDAD-NW was successfully translated and implemented by AAA case managers and resulted in increased physical activity and improved behavioral and emotional outcomes of caregiver/PWDs. Results support continued dissemination and implementation of RDAD-NW.
This article presents results from a conceptual validation of the programme ‘Living Together with Dementia’, through an e-Delphi study carried out during April/May, 2015 with 26 Portuguese and Spanish experts. The programme consists of seven individual weekly sessions and two group sessions over a seven-week period. It covers dementia, communication and behaviour; demands and expectations of the caregiver role; basic activities of daily living; coping and problem solving strategies; physical and mental health of the caregiver and community support. The programme methods mainly consist of discussion sessions, practical examples/simulations and skill training.
Background Informal caregivers report substantial burden and depressive symptoms which predict higher rates of patient institutionalization. While caregiver education interventions may reduce caregiver distress and decrease the use of long-term institutional care, evidence is mixed. Inconsistent findings across studies may be the result of reporting average treatment effects which do not account for how effects differ by participant characteristics. We apply a machine-learning approach to randomized clinical trial (RCT) data of the Helping Invested Family Members Improve Veteran's Experiences Study (HI-FIVES) intervention to explore how intervention effects vary by caregiver and patient characteristics. Methods We used model-based recursive partitioning models. Caregivers of community-residing older adult US veterans with functional or cognitive impairment at a single VA Medical Center site were randomized to receive HI-FIVES (n = 118) vs. usual care (n = 123). The outcomes included cumulative days not in the community and caregiver depressive symptoms assessed at 12 months post intervention. Potential moderating characteristics were: veteran age, caregiver age, caregiver ethnicity and race, relationship satisfaction, caregiver burden, perceived financial strain, caregiver depressive symptoms, and patient risk score. Results The effect of HI-FIVES on days not at home was moderated by caregiver burden (p < 0.001); treatment effects were higher for caregivers with a Zarit Burden Scale score <= 28. Caregivers with lower baseline Center for Epidemiologic Studies Depression Scale (CESD-10) scores (<= 8) had slightly lower CESD-10 scores at follow-up (p < 0.001). Conclusions Family caregiver education interventions may be less beneficial for highly burdened and distressed caregivers; these caregivers may require a more tailored approach that involves assessing caregiver needs and developing personalized approaches.
Oral health is an often-undervalued contributor to overall health. The literature, however, underscores the myriad of systemic diseases influenced by oral health, including type II diabetes, heart disease, and atherosclerosis. Thus, assessments of oral health, called oral screenings, have a significant role in assessing risk of disease, managing disease, and even improving disease by oral care. Here we present a method to assess oral health quickly and consistently across time. The protocol is simple enough for non-oral health professionals such as students, family, and caregivers. Useful for any age of patient, the method is particularly key for older individuals who are often at risk of inflammation and chronic disease. Components of the method include existing oral health assessment scales and inventories, which are combined to produce a comprehensive assessment of oral health. Thus, oral characteristics assessed include intraoral and extraoral structures, soft and hard tissues, natural and artificial teeth, plaque, oral functions such as swallowing, and the impact this oral health status has on the patient's quality of life. Advantages of this method include its inclusion of measures and perceptions of both the observer and patient, and its ability to track changes in oral health over time. Results acquired are quantitative totals of questionnaire and oral screening items, which can be summed for an oral health status score. The scores of successive oral screenings can be used to track the progression of oral health across time and guide recommendations for both oral and overall health care.
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.
BACKGROUND: Most people who are dying want to be cared for at home, but only half of them achieve this. The likelihood of a home death often depends on the availability of able and willing lay carers. When people who are dying are unable to take oral medication, injectable medication is used. When top-up medication is required, a health-care professional travels to the dying person's home, which may delay symptom relief. The administration of subcutaneous medication by lay carers, although not widespread UK practice, has proven to be key in achieving better symptom control for those dying at home in other countries. OBJECTIVES: To determine if carer administration of as-needed subcutaneous medication for common breakthrough symptoms in people dying at home is feasible and acceptable in the UK, and if it would be feasible to test this intervention in a future definitive randomised controlled trial. DESIGN: We conducted a two-arm, parallel-group, individually randomised, open pilot trial of the intervention versus usual care, with a 1 : 1 allocation ratio, using convergent mixed methods. SETTING: Home-based care without 24/7 paid care provision, in three UK sites. PARTICIPANTS: Participants were dyads of adult patients and carers: patients in the last weeks of their life who wished to die at home and lay carers who were willing to be trained to give subcutaneous medication. Strict risk assessment criteria needed to be met before approach, including known history of substance abuse or carer ability to be trained to competency. INTERVENTION: Intervention-group carers received training by local nurses using a manualised training package. MAIN OUTCOME MEASURES: Quantitative data were collected at baseline and 6-8 weeks post bereavement and via carer diaries. Interviews with carers and health-care professionals explored attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The main outcomes of interest were feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. RESULTS: In total, 40 out of 101 eligible dyads were recruited (39.6%), which met the feasibility criterion of recruiting > 30% of eligible dyads. The expected recruitment target (≈50 dyads) was not reached, as fewer than expected participants were identified. Although the overall retention rate was 55% (22/40), this was substantially unbalanced [30% (6/20) usual care and 80% (16/20) intervention]. The feasibility criterion of > 40% retention was, therefore, considered not met. A total of 12 carers (intervention, n = 10; usual care, n = 2) and 20 health-care professionals were interviewed. The intervention was considered acceptable, feasible and safe in the small study population. The context of the feasibility study was not ideal, as district nurses were seriously overstretched and unfamiliar with research methods. A disparity in readiness to consider the intervention was demonstrated between carers and health-care professionals. Findings showed that there were methodological and ethics issues pertaining to researching last days of life care. CONCLUSION: The success of a future definitive trial is uncertain because of equivocal results in the progression criteria, particularly poor recruitment overall and a low retention rate in the usual-care group. Future work regarding the intervention should include understanding the context of UK areas where this has been adopted, ascertaining wider public views and exploring health-care professional views on burden and risk in the NHS context. There should be consideration of the need for national policy and of the most appropriate quantitative outcome measures to use. This will help to ascertain if there are unanswered questions to be studied in a trial. TRIAL REGISTRATION: Current Controlled Trials ISRCTN11211024. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology A sessment; Vol. 24, No. 25. See the NIHR Journals Library website for further project information
As the ageing population grows globally, the need for informal care-usually provided by family and friends-will continue to increase. Numbers of people with dementia also continue to rise, and much of their care will be provided by relatives. As such, more people who may themselves be older, will take on such caring roles. Consequently, more carers are likely to have education and support needs. Amidst government recognition of the need to provide good quality, person-centred education and support to carers, there are tensions between the potential for such provision to be resource intensive and whether existing services have the capacity to meet the needs of carers. Massive Open Online Courses (MOOCs) are a resource with scope to meet some of these educational and support needs. MOOCs enable flexible learning, are often free, and can be accessed anywhere in the world. Providing supportive dementia care requires carers to have an understanding of the condition, assistance to cope with the responsibilities of caring, and recognition of the importance of their own health and wellbeing as well as the person they support. In response to the needs of family carers of people with advancing dementia identified through a 5 year programme of research, we developed a MOOC-dementia care: living well as dementia progresses. This is an accessible source of relevant and engaging information; which enables carers to learn about advancing dementia, consider their own needs and create an interactive global forum of peer support.
Dementia is a term used when the brain functionality reduces in terms of behaviour, memory and thinking clearly for daily activities. In the early stages, memory impairment limits the memory processes in patients with dementia (PwD). In advanced stages, it affects the PwD’s autonomy when performing complex daily activities such as PwD’s interaction and communication with people around them. Dementia is becoming one of the major causes of disability and dependency among older people worldwide. It affects the ability of an individual to reason with and to understand others, which creates difficulties in communication between the family caregivers and PwDs. Thus, there is a need for a platform to help family caregivers to communicate with the PwDs efficiently. One of the helpful tools to work with is a mobile application (app). Mobile apps can be widely available and easy to use for the people caring for PwDs. This paper describes the development of a mobile app for people interacting with PwDs. The app contains different scenarios related to daily activities that are usually performed by PwDs. Each scenario includes a set of options for the users and asks them to choose the option in response to the corresponding daily activity. Having chosen the option, the app provides the user with comments which are already included in the app for each scenario. The comments were developed by the research team in partnership with clinicians having more than 5 years of experience with PwDs. Caring4Dementia app can address the communication problem by providing (1) specific knowledge about the PwD’s condition cognitive performance evaluation, and monitoring, and (2) educating on appropriate behaviour to adopt while facing communication challenges associated with dementia. The theoretical framework of a communication training app introduced in the present paper will direct the future empirical investigations where the effectiveness of the app will be compared to the effectiveness of currently existing methods.
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.
Objective: This study aimed to determine whether delivery of a dyadic intervention using telehealth was noninferior to delivery of the same program using traditional face-to-face delivery through home visits. Design: We conducted a noninferiority randomized controlled trial. Participants: Participants had a diagnosis of dementia, were living in the community, and had an informal caregiver who reported difficulties in managing activities of daily living or behavioral symptoms. Intervention: Participants were randomized to receive either telehealth or home visit delivery of the same intervention program. Measurements: The primary outcome was the Caregiving Mastery Index, secondary outcomes included caregiver's perceptions of change, activities of daily living function, and type and frequency of behavioral symptoms of persons living with dementia. Therapists delivering the intervention recorded the time spent delivering the intervention as well as travel time. Results: Sixty-three dyads were recruited and randomized. Both groups reported improvements for the primary outcome, however, these were not statistically significant. There were no significant differences between groups for the primary outcome (mean difference 0.09 (95% confidence interval −1.26 to 1.45) or the secondary outcomes at 4 months. Both groups reported significant improvements in caregiver's perceptions of change. The amount of time spent delivering the content of the program was similar between groups, however offering the intervention via telehealth significantly reduced travel time (mean 255.9 minutes versus mean 77.2 minutes, p <0.0001). Conclusion: It is feasible to offer dyadic interventions via telehealth and doing so reduces travel time and results in similar benefits for families.
Objective: International appeals call for interventions to prevent aggression and other behavioral problems in individuals with dementia (IWD). Aggression Prevention Training (APT), based on intervening in three contributors to development of aggression (IWD pain, IWD depression, and caregiver–IWD relationship problems) aims to reduce incidence of aggression in IWD over 1 year. Design: Randomized, controlled trial. Setting: Three clinics that assess, diagnose, and treat dementia. Participants: Two hundred twenty-eight caregiver–IWD dyads who screened positive for IWD pain, IWD depression, or caregiver–IWD relationship problems randomized to APT or Enhanced Usual Primary Care (EU-PC). Intervention: APT, a skills-based intervention delivered over 3 months to address pain/depression/caregiver–IWD relationship issues. EU-PC included printed material on dementia and community resources; and eight brief, weekly support calls. Measurements: The primary outcome was incidence of aggression over 1 year, determined by the Cohen Mansfield Agitation Inventory-Aggression Subscale. Secondary outcomes included pain, depression, caregiver–IWD relationship, caregiver burden, positive caregiving, behavior problems, and anxiety. Results: Aggression incidence and secondary outcomes did not differ between groups. However, in those screening positive for IWD depression or caregiver–IWD relationship problems, those receiving EU-PC had significant increases in depression and significant decreases in quality of the caregiver–IWD relationship, whereas those receiving APT showed no changes in these outcomes over time. Conclusion: The cost to patients, family, and society of behavioral problems in IWD, along with modest efficacy of most pharmacologic and nonpharmacologic interventions, calls for more study of novel preventive approaches.
Family caregivers play a critical role in dietary care and the nutritional status of people with dementia. The aim of this study was to investigate the effects of a family care-based dementia dietary educational program (DDEP) on family caregivers’ nutritional knowledge, healthy eating behavior and nutritional status of people with dementia. A total of 57 pairs of participants completed this longitudinal experimental study. Group A received routine care. Group B received the DDEP. Three outcomes were measured at pretest (T1), posttest (T2) and follow-up test (T3). Generalized estimating equations and regression were used to analyze the data. The scores of the caregivers’ nutritional knowledge significantly increased after receiving the DDEP in group B, and this increase was better than in group A. The posttest and follow-up test scores of healthy eating behavior were significantly higher than the pretest scores in both groups. The scores of nutritional status in group B increased from the pretest to the follow-up test, although there was no significant difference between the two groups. Some demographic factors played significant roles in the caregivers’ nutritional knowledge and healthy eating behavior. In sum, the DDEP improved the caregivers’ nutritional knowledge and healthy eating behavior for dementia. The demographic factors of family caregivers should be considered when providing nutritional information to enhance the nutritional status of people with dementia. The DHPDEP should be incorporated into the in-service education and training courses for nurses or dietitians who work with people with dementia.
Aim To assess the effectiveness of psychoeducational interventions with respect to burden, anxiety and depression in family caregivers of People With Dementia living at home. Background In dementia, the family assumes the role of main caregiver, maintaining the patient in a good state of health. Nevertheless, burden, anxiety and depression may have negative repercussions in caregivers. Therefore, professional supports through psychoeducational programmes are recommended as interventions for improving caregivers' health. Design A quantitative systematic review. Data Sources Electronic searches were performed in CINAHL/AMED/CENTRAL/Web of Science/LILACS/PUBMED from January 2005–August 2018. Review Methods The review was conducted using the JADAD scale to assess bias risk and the quality of the randomized controlled trials (RCTs) and the CONSORT instrument to assess study quality report. The extracted data were reviewed by independent reviewer pairs. The review was reported using PRISMA. Results A total of 18 RCTs met inclusion criteria. Seven were classified as Technology‐based Interventions and 11 as Group‐based Interventions. Conclusion Psychoeducational interventions for caregivers allow them to increase their knowledge of the illness, develop problem‐solving skills and facilitate social support. Technology‐based Interventions significantly affect burden while Group‐based Interventions affect anxiety, depression, insomnia and burden and quality of life and self‐efficacy. Impact Research findings can be used to classify caregivers in future interventions according to illness stage to obtain more precise results.
Background Family education programs (FEPs) target caregiving-related psychological distress for carers of relatives/friends diagnosed with serious mental health conditions. While FEPs are efficacious in reducing distress, the mechanisms are not fully known. Peer group support and greater mental health knowledge are proposed to reduce carers' psychological distress by reducing stigmatising attitudes and self-blame, and strengthening carers' relationship with their relative. Methods Adult carers (n = 1016) who participated in Wellways Australia's FEP from 2009 to 2016 completed self-report questionnaires at the core program's start and end, during the consolidation period, and at a 6-month follow-up. Those who enrolled early completed questionnaires prior to a wait-list period. We used linear mixed-effects modelling to assess the program's effectiveness using a naturalistic wait-list control longitudinal design, and multivariate latent growth modelling to test a theory-based process change model. Results While there was no significant change over the wait-list period, psychological distress, self-blame and stigmatising attitudes significantly decreased, and communication and relationship quality/feelings increased from the core program's start to its end. Changes were maintained throughout the consolidation period and follow-up. Peer group support significantly predicted the declining trajectory of distress. Peer group support and greater knowledge significantly predicted declining levels of self-blame and stigmatising attitudes, and increasing levels of communication. Conclusions This is the first study to quantitatively validate the mechanisms underlying the effect of FEPs on carers' psychological distress. Peer group support is key in modifying carers' appraisals of their friend/relatives' condition. Continued implementation of FEPs within mental health service systems is warranted.
BACKGROUND: eHealth can enhance the delivery of clinical cancer care by offering unique education opportunities for oncology nurses, patients, and family caregivers throughout the cancer trajectory. OBJECTIVES: This article reviews eHealth technology that can be applied to oncology education, such as mobile health applications, text messaging, web-based education, and audio- and videoconferencing. METHODS: Case studies provide exemplars of eHealth technologies used for delivering oncology education to nurses, patients, and caregivers. FINDINGS: By using eHealth technologies to obtain and provide education, oncology nurses are well positioned to improve the lives of patients and caregivers.
BACKGROUND: Cognitive impairment is common in older patients with heart failure (HF), leading to higher 30-day readmission rates than those without cognitive impairment. OBJECTIVES: The aim of this study was to determine whether increased readmissions in older adults with cognitive impairment are related to HF severity and whether readmissions can be modified by caregiver inclusion in nursing discharge education. METHODS: This study used prospective quality improvement program of cognitive testing and inclusion of caregivers in discharge education with chart review. Two hundred thirty-two patients older than 70 years admitted with HF were screened for cognitive impairment using the Mini-Cog; if score was less than 4, nurses were asked to include caregivers in education on 2 cardiovascular units with an enhanced discharge program. Individuals with ventricular assist device, transplant, or hospice were excluded. Measurements include Mini-Cog score, 30-day readmissions, readmission risk score, ejection fraction, brain natriuretic peptide, and medical comorbidities. RESULTS: Readmission Risk Scores for HF did not correlate with Mini-Cog scores, but admission brain natriuretic peptide levels were less abnormal in those with better Mini-Cog scores. Only for patients with cognitive impairment, involving caregivers in discharge teaching given by registered and advanced practice nurses was associated with decreased 30-day readmissions from 35% to 16% (P = .01). Readmission rates without/with cognitive impairment were 14.1% and 23.8%, respectively (P = .09). Abnormal Mini-Cog screen was associated with a significantly increased risk of 30-day readmission (odds ratio, 2.23; 95% confidence interval, 1.06-4.68; P = .03), whereas nurse documentation of education with family was associated with a significantly decreased risk of 30-day readmission (odds ratio, 0.46; 95% confidence interval, 0.24-0.90; P = .02). CONCLUSIONS: Involving caregivers in discharge education significantly reduced 30-day readmission rates for patients with HF and cognitive impairment. The Readmission Risk Score was similar between patients older than 70 years with and without cognitive impairment. We have hypothesis-generating evidence that identification of cognitive impairment and targeted caregiver engagement by nurses may be critical in the reduction of readmission rates for older patients with HF.
Background: Patients with heart valve disease need to receive long-term care from their family members after surgical valve replacement. Thus, family caregivers should have adequate self-efficacy for patient care. Objectives: This study examined the effects of the family-centered empowerment model (FCEM) on self-efficacy and self-esteem among the family caregivers of patients with prosthetic heart valve. Methods: In this quasi-experimental study, forty patients together with one of their family caregivers were consecutively recruited and allocated to an intervention or a control group. The FCEM was used in three to five sessions for patients in the intervention group. Besides, we sent their family caregivers educational cards containing the same educations provided to their patients. Finally, an educational session was held for family caregivers in which their questions were answered and each of them was provided with an educational booklet containing the same materials as the educational cards. Patients and their family members in the control group received routine care. Self-efficacy and self-esteem of family caregivers were assessed before, 1 week, and 1.5 months after the intervention. Data analysis was performed through the independent-samples t-test and the repeated measures analysis of variance. Results: Before the intervention, the mean scores of self-efficacy in the control and the intervention groups were 26.68 ± 4.79 and 26.79 ± 5.49, whereas the mean scores of self-esteem in these groups were 33.74 ± 4.55 and 33.84 ± 4.72, respectively. None of the between-group differences were significant. After the intervention, the mean scores of self-efficacy and self-esteem in the intervention group were significantly greater than the control group (37.32 ± 2.68 versus. 29.89 ± 2.20 and 36.26 ± 3.66 versus. 29.26 ± 5.84; P < 0.05). Conclusion: The use of the FCEM promotes self-efficacy and self-esteem among the family caregivers of patients with prosthetic heart valve.
This video-based resource is designed to help people look after someone safely at home.
This resource will help you care for people in any situation, although this resource may be particularly useful if you are supporting someone during the COVID-19 crisis.
Each section has a set of videos designed to give you and the person you care for practical and relevant information to support you day to day.
What will the videos cover?
There is no set order you need to go through these topics, and some may not apply to your specific situation. Learn at your own pace and choose whichever is relevant to you.
Resources for home care providers, GPs, commissioners and families on how to deliver reablement services that promote independence. Includes 'updated guidance for carers and families'.
National Institute for Health and Care Excellence guidance suggests that carers of individuals with a diagnosis of borderline personality disorder experience high levels of psychological distress, yet few services in the UK offer specific support to this group of carers. This article will describe the development of a psychoeducational carers' group based on schema theory (Young et al, 2003), including the development of the role of carer experts-by-experience as group co-facilitators. Initial outcome data from the pilot suggest that carers are highly satisfied with the group and that it improves their knowledge, understanding and personal well-being.
Background: Communication and empathy are considered as key competences in the care of persons with dementia. Virtual reality might be an effective intervention to train informal and professional caregivers of persons with dementia in order to improve their communication skills and empathy.; Objectives: The aim of this study was to map the use and impact of virtual reality simulation in dementia care education.; Method: A scoping review was performed. Studies with all types of qualitative or quantitative design published since 2007 in English, French or German were included if a virtual reality intervention was examined in a dementia care education setting (e.g. nursing school, caregiver training). The literature search was conducted in six databases (MEDLINE, CINAHL, PsycINFO, Web of Science Core Collection, ERIC, and Inspec), including an additional hand search as well as backward and forward citation tracking of included studies. Charted data was narratively reported by clustering results according to study characteristics and impact of virtual reality.; Results: The review process resulted in the inclusion of six studies published between 2012 and 2017. Two of them are ongoing studies. Three studies had a one group pre-post-test design and in one study a post-test only design was applied. The samples consisted of caregivers of people with dementia as well as students and varied in size between seven and 126. Eight different outcomes were measured, e.g. empathy, competence, and stress. Interventions resulted in improvements of caregivers' and students' empathy and competences among other outcomes.; Conclusions: No studies with controlled design and group comparisons are available yet. There are some indications that virtual reality might be an effective intervention to train caregivers of persons with dementia. Little is known about the use and impact of virtual reality in dementia-related education. Since studies are rare and do not address effectiveness, the findings of this review can substantially contribute to guide further research on this topic.
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: Several studies show the effectiveness of face-to-face interventions with families in improving the prognosis of patients with severe psychiatric disorders and their relatives; however, the effectiveness of online interventions is poorly understood. The current study aims to provide an overview of evidence for the effectiveness of online treatments (web/app) for patients with severe psychiatric disorders and their families.; Method: We performed a systematic review of online treatments for informal family caregivers of patients with a severe psychiatric disorder. The study psychological interventions had to have been administered in an exclusively online format (app, internet) and aimed at families of patients with severe mental disorder (at least one of first episode psychosis, schizophrenia, schizoaffective, bipolar disorder, and psychotic disorder).; Results: Of a total of 1331 articles, we identified 9 viable studies; 4 randomized clinical trials, and 5 nonrandomized clinical studies. The present study is the first systematic review in this area. Online interventions were well accepted, with good adherence and satisfaction among the caregivers and patients and improved the symptoms of both caregivers and patients.; Limitations: Clinical and methodological diversity of the studies.; Conclusions: Burden improved, and perceived stress decreased in families. Moreover, the severity of positive symptoms decreased and fewer hospitalizations were recorded in patients than in the control group. Therefore, online interventions are a promising therapeutic approach for patients with severe mental disorder and their families. However, more studies-particularly randomized clinical trials-are needed in this area.
Parkinson's Disease is associated with a high assistive complexity, thus generating in caregivers a burden proportional to the intensity of the care provided. This study aims to evaluate whether the stress-related level of caregivers is related to their perception of the need for healthcare education. A cross-sectional study was conducted on 69 family caregivers that completed the Stress-related Vulnerability Scale (SVS scale) with a tool of proposed interventions stratified according to caregivers' need as “nothing”, “somewhat”, “moderately” and “extremely”. A direct association between the SVS scale and the perception of the usefulness of interventions was detected, and significant differences were observed for “Caregivers tele-support group” and “Peer-led support group” interventions, thus suggesting an important role for caregivers' emotional status in considering of training courses. Caregivers are split between low vulnerability, with minimal perception of training need, and high burden state with the acute necessity of support to manage patients.
Persons living with dementia and their carers experience stigma. Stigma intensifies social exclusion and threatens health and well-being. Decreasing stigma associated with dementia is a public health priority across national and international settings and is a key component of National Dementia Strategies. Research-based drama is an effective public health strategy for reducing stigma and enhancing well-being. In this article we focus on survey data from an evaluation of a research-based drama called Cracked: new light on dementia. Our analysis illustrates the effectiveness of Cracked in reducing stigma by: decreasing health care practitioners' and family carers' prejudice, fostering critical reflection about relational practices, and fostering a commitment to individual and collective action to address stigma. Cracked is well-positioned to respond to urgent calls for culture change, which include reducing societal misconceptions and stereotypes around dementia and promoting inclusive and meaningful engagement of persons living with dementia across all levels of society.
Background: Informal caregivers (IC) of people with dementia (PwD) are at greater risk of developing physical and mental health problems when compared to the general population and to IC of people with other chronic diseases. Internet-based interventions have been explored for their potential to minimize the negative effects of caring, accounting for their ubiquitous nature, convenient delivery, potential scalability and presumed (cost) effectiveness. iSupport is a self-help online program developed by the World Health Organization (WHO) to provide education, skills training and support to IC of PwD. This paper describes the design of an intervention study aimed at determining the effectiveness of a Portuguese culturally adapted version of iSupport on mental health and other well-being outcomes.; Methods: The study follows an experimental parallel between-group design with two arms: access to the five modules and twenty-three lessons of "iSupport" for three months (intervention group); or access to an education-only e-book (comparison group). One hundred and eighty four participants will be recruited by referral from national associations. Inclusion criteria are: being 18 years or older and provide e-consent; being a self-reported non-paid caregiver for at least six months; of a person with a formal diagnosis of dementia; being skilled to use internet; and experience a clinically relevant level of burden (≥ 21 on Zarit Burden Interview) or depression or anxiety symptoms (≥ 8 on Hospital Anxiety and Depression Scale). Data is collected online, resorting to self-administered instruments, at baseline, 3 and 6 months after baseline. The primary outcome is caregiver burden, measured by the Zarit Burden Interview. Symptoms of depression and anxiety, quality of life, positive aspects of caregiving and general self-efficacy are secondary study outcomes. The data analysis will follow an Intention-to-treat (ITT) protocol.; Discussion: This protocol is an important resource for the many organizations in several countries aiming to replicate iSupport. Findings from this intervention study will offer evidence to bolster an informed decision making on scaling up iSupport as a new intervention program with minimal costs aimed at minimizing the psychological distress of IC of PwD in Portugal and elsewhere.; Trial Registration: ClinicalTrials.gov, NCT04104568. Registered 26 September 2019.;
Introduction: The End-of-Life Namaste Care Program for People with Dementia, challenges the misconception that people with dementia are a 'shell'; it provides a holistic approach using the five senses, which can provide positive ways of communicating and emotional responses. It is proposed Namaste Care can improve communication and the relationships families and friends have with the person with dementia. Previously used in care homes, this study is the first to explore the pioneering use of Namaste Care in people's own homes.; Objective: To develop initial programme theories detailing if, how and under which circumstances Namaste Care works when implemented at home.; Design: A qualitative realist approach following the RAMESES II guidelines was employed to understand not only whether Namaste Care has positive outcomes, but also how these are generated, for whom they happen and in which circumstances.; Setting: A hospice in the North East of England, operating in the community, through volunteers.; Participants: Programme theories were developed from three focus groups with volunteers implementing Namaste Care (n=8; n=8; n=11) and eight interviews with family carers (n=8).; Results: Four refined explanatory theories are presented: increasing engagement, respite for family carers, importance of matched volunteers and increasing social interaction. It was identified that while Namaste Care achieved some of the same goals in the home setting as it does in the care home setting, it could also function in a different way that promoted socialisation.; Conclusions: Namaste Care provides holistic and personalised care to people with both moderate and advanced dementia, improving engagement and reducing social isolation. In the present study carers often chose to use Namaste Care sessions as respite. This was often linked to their frustration of the unavoidable dominance of task-focussed care in daily life. Individualised Namaste Care activities thus led to positive outcomes for both those with dementia and their carers.
Objective: To evaluate a Multiple Family Group (MFG) education and support intervention for individuals with Spinal Cord Injury (SCI) and their primary caregivers. We hypothesized that MFG would be superior to an Education Control Group (EC) for improving patient activation and coping skills, social supports, and relationship functioning. Setting: A large free-standing inpatient and outpatient rehabilitation facility. Participants: Community dwelling adults with SCI and their caregivers living in the Northwest United States. Interventions/Methods: Nineteen individuals with SCI who had been discharged from inpatient rehabilitation within the previous three years, and their primary caregivers participated. Patient/caregiver pairs were randomized to the MFG intervention or an active SCI EC condition in a two-armed clinical trial design. Participants were assessed pre- and post-program and 6 months post-program. Qualitative and quantitative outcomes were evaluated. Focus groups were conducted with each group to determine benefits and recommendations for improvement. Results: Relative to EC, MFG reduced passive coping and increased subjective and overall social support in participants with SCI. Relative to EC, MFG also reduced passive coping in caregivers. Patient activation relative to EC was non-significantly increased. Content analysis identified four themes describing participants' experiences: enhanced sense of belonging, increased opportunities for engagement, knowledge, and team work; results that were generally congruent with quantitative measures of improved social support. Conclusions: Relative to EC, MFG assisted participants with SCI and their caregivers to manage the difficult, long-term, life adjustments by improving coping and strengthening social support.Trial registration: ClinicalTrials.gov NCT02161913. Registered 10 June 2014.
The aim of this article was to present the preliminary results of a training programme for family caregivers of people with dementia at an early to moderate stage living at home - 'Living Together With Dementia'. In this randomised controlled trial, 27 family caregivers who met the inclusion criteria were recruited from the neurology outpatient consultation clinic of a hospital in the north of Portugal and randomised into two groups (control and experimental) between October 2015 and March 2016. The programme 'Living Together With Dementia' was applied to the participants of the experimental group. The strategies used, overload, difficulties and satisfaction of the caregivers were assessed at three different stages (at the beginning and end of the intervention, as well as at follow-up). For the data analysis, quantitative parametric measures were applied. The Health Ethical Commission of the Hospital Centre approved the study, and its protocol and Helsinki Declaration ethical principles were considered throughout the process. In the final assessment, an improvement in the overload and difficulties was confirmed, as was an increase in the caregivers' satisfaction level and an improvement in coping/problem-solving strategies. In the follow-up stage, the results tended to revert towards those of the initial assessment. The programme 'Living Together With Dementia' appeared to be a major contribution enabling family caregivers of people with dementia, although there is a need to develop an efficacy study using a more substantial sample. The programme contributed to a reduction in the overload and difficulties borne by the family caregivers of people with dementia at an early to moderate stage living at home and to increased caregiver satisfaction.
Objective: This randomized controlled trial was conducted to determine whether a 12-week home-based aerobic and resistance exercise program would improve physical function and caregiving perceptions among family caregivers (FCGs) of persons with heart failure. Method: Overall, 127 FCGs were randomized to one of three groups: usual care attention control (UCAC), psychoeducation only (PE), and psychoeducation plus exercise (PE + EX). Physical function measures (6-min walk test, handgrip, and upper and lower strength) and caregiving perceptions (Bakas Caregiving Outcomes Scale) were obtained at baseline and at 6 months. Results: FCGs in the PE + EX showed significant improvement in 6-min walk distance (p = .012), handgrip, and lower extremity strength compared with the PE and UCAC groups. The combined group had the greatest improvement in caregiver perceptions (p < .001). Conclusion: FCGs in the PE + EX group improved the most in physical function and caregiver perception outcomes. Directions for future research are provided.
Aim: Nurses are teachers to their patients and need to know best practices for diverse families living with dementia. Little is known about Hispanic beliefs around dementia knowledge and self-efficacy that may have an impact on the learning situation. Design: A pre-/postresearch design was used in this intervention study with a baseline assessment of dementia knowledge and caregiver self-efficacy and a reassessment at training completion. Methods: Investigation of education training with two caregiver groups caring for persons with dementia: Caucasian and Hispanic. Convenience sample consisted of 567 Caucasians and 104 Hispanic dementia caregivers. Groups received training in their primary language accompanied by a training book (Dealing with Dementia Guide) also in the primary language. Results: Dementia knowledge and caregiver self-efficacy increased in both groups with the Hispanic group demonstrating significantly greater increase in self-efficacy. The Caucasian group had a significantly greater increase in the dementia knowledge compared with the Hispanic group.
Study Design: Mixed-methods study.; Objective: Evaluate the knowledge that family caregivers of individuals with spinal cord injuries acquired through the use of a high-fidelity simulation-based learning (SBL) program.; Setting: The study was comprised of three phases: a previous qualitative research study detecting training needs, one in which clinical simulation scenarios were designed, and a final quasi-experimental phase in which ten caregivers of individuals with spinal cord injuries were trained in their care using simulations at the Toledo National Hospital for Paraplegics (Spain).; Methods: The competences acquired by the family were evaluated before and after the simulation training. A researcher-validated tool for each scenario was utilized for this evaluation.; Results: Four learning scenarios were designed based on the needs identified through the caregiver interviews. Following the training of the caregivers with SBL, an increase in their knowledge and skills was identified. For all the scenarios, the caregivers obtained a higher average score on the post test than on the pre test, and these differences were significant (p < 0.001).; Conclusions: Simulation training is a useful and efficient learning tool for caregivers of individuals with a spinal cord injury.
Background. To create efficacious interventions for military family caregivers (MFCs), it is important to understand the characteristics and predictors of completers and dropouts of newly developed supportive interventions. Aim. The purpose of this study was to examine completion patterns in MFCs enrolled in an educational intervention feasibility study. Method. Baseline data are presented from MFC completers (n = 64) and dropouts (n = 60) of a national feasibility study for an innovative intervention. Measures include depression (Patient Health Questionnaire-2), anxiety (Generalized Anxiety Disorder-7), somatic symptoms (Patient Health Questionnaire-15), quality of life (World Health Organization Quality of Life-Brief), relationship satisfaction (Relationship Assessment Scale), and military care recipient number of injuries. Analysis of variance was used to evaluate differences between completers and dropouts and logistic regression was used to identify predictors of intervention completion. Results. Results indicated that MFCs with greater anxiety, χ2(3) = 10.33, p = .02; depression, χ2(1) = 8.18, p = .004; somatic symptoms, F(1, 106) = 6.26, p = .01; care recipient number of injuries, F(1, 118) = 16.31, p < .001; lower general satisfaction with treatment, F(1, 96) = 4.34, p = .04; and lower satisfaction with accessibility and convenience with treatment, F(1, 89) = 4.18, p = .04, were significantly more likely to complete the intervention. After multivariate analysis, the sole predictor of intervention completion was the number of care recipients' injuries, χ2(6) = 14.89, N = 77, p < .05. Conclusions. Overall, findings indicate that MFCs who were more "at risk" were more likely to complete the intervention. Findings present patterns of intervention completion and provide insight on areas in need of further investigation on intervention development supporting the needs of MFCs.
Urinary incontinence (UI) is a highly prevalent condition, burdening older adults and their informal caregivers. This study explored the development and feasibility of a 6-week evidence-based, educational/skill building program delivered via tablet-personal computer aimed at developing informal caregiver UI knowledge; and enhancing informal caregiver skill set in prompted voiding and toileting strategies. Caregivers also received individualized weekly coaching sessions from a nurse expert. Feasibility and preliminary efficacy were tested in three caregiver/care-recipient dyads. Recruitment of eligible participants through community-based resources was a challenge to feasibility. Most caregivers found the technology acceptable, but adherence to prompted voiding was inconsistent. All caregivers rated the intervention highly, reported improvements in their care-recipient's urine leakage, found access to a UI expert beneficial, and would recommend it to a friend. The results suggest that the tablet-facilitated intervention was feasible and acceptable to informal caregivers and showed promise for improving both caregiver and care recipient outcomes.
Background: With the obtained advancement in solving health problems, family caregivers are replaced with the care institutions. The accompanying and supporting patients during the disease treatment is very effective in the Iranian culture.; Aim: This study aims at determining the effect of health intervention based on family-centred empowerment model on health literacy and self-efficacy among caregivers of patients with multiple sclerosis.; Methods: In this quasi-experimental study, 70 family caregivers were randomly assigned to the two control and experimental groups, who were evaluated using demographic TOFHLA health literacy and self-efficacy questionnaires. Then, based on training needs in the experimental group, intervention was conducted based on the family-centred empowerment model during one month. The control group received no intervention, and immediately after training and three months after implementing the program, the health literacy and self-efficacy in both the experimental and control groups were re-evaluated.; Results: Before intervention, mean of health literacy in the experimental group was 57.2 ± 9.15 and 3 months after intervention, it reached 62.45 ± 9.39, (p < 0.001). The self-efficacy score in the experimental group was 17.2 ± 3.48 before intervention and it reached to 19.34 ± 11.3 after intervention, which was also significant(p < 0.001).; Conclusion: interventions based on family-centred empowerment approach can improve the health literacy and self-efficacy of caregivers, assist them to provide specialised and efficient care and lead to improved quality of care in caregiving.
Background: Caregivers of hemodialysis patients spend a large amount of time providing care to these patients while tolerating fatigue and stress. This study evaluated a family-centered empowerment program on the care burden and self-efficacy of hemodialysis patient caregivers based on social cognitive theory.; Methods: In this randomized clinical trial, 70 family caregivers of hemodialysis patients in Isfahan, Iran, were selected and randomly allocated to intervention and control groups, in 2015-2016. Two questionnaires were used to collect the family caregivers' characteristics, care burden, and self-efficacy, and patients' negative and positive outcomes expectancies. Data were analyzed using SPSS before, immediately after, and 2 months after the intervention.; Results: There was no significant difference in the mean scores of care burden, positive outcomes expectancies, negative outcomes expectancies, and self-efficacy between the two groups before the intervention. However, there were significant differences in the post-test and follow-up data analyses (P<0.05).; Conclusion: Given the degenerative nature of chronic kidney disease, it can be considered as a source of long-term and chronic stress for caregivers. Therefore, by implementing an empowerment program, caregiving behaviors can be improved, positive outcomes expectancies can be increased, and negative outcomes expectancies can be reduced.
The role of caregivers is very important in the management of person with dementia, where it is not uncommon for them to experience psychological distress. However, the level of distress can be managed and reduced through strategic educational intervention. A systematic review has been conducted through searching Medline, Science direct, Cochrane library and EMBASE databases to provide a narrative synthesis that elaborate on methods and outcomes of the educational intervention among informal caregiver of person with dementia. From a total of 5125 records, eight studies were selected and included in this review, where the results show that educational intervention can be implemented either as individual or group intervention. Group intervention methods mainly focus on training programs such as workshops and lectures, and also group-based discussions. While for individual intervention, most of the activities were implemented through self-learning using technology or computer-based systems. In conclusion, based on the outcome of the studies, both methods of implementations are found to be useful in reducing psychological distress of the informal caregiver.
Objective: The aim of this study was to develop learning objectives and identify content for a core communication and health literacy curriculum designed to optimize the role of informal cancer caregivers (family or friends).; Methods: A three-step process was conducted: (a) two-round online Delphi method process with experts (n=9) in cancer caregiving to gain consensus on curriculum learning objectives; (b) online survey of oncology providers (n=32) to generate potential content and rate importance of domains; and (c) focus group of cancer caregivers (n=6) to explore caregiving experiences and curriculum content topics.; Results: Overall, 17 learning objectives and 53 topics were identified for a cancer caregiver communication and health literacy curriculum. Feedback from cancer caregivers did not produce any new topics yet confirmed topics generated by experts and providers. The curriculum identified as essential has been organized under the following headings: finding cancer information; assessing and integrating information; working with healthcare providers; getting help; talking with the care recipient; recognizing the care recipient's needs; and planning for caregiver self-care.; Conclusions: This theoretically-grounded study systematically identified seven curriculum topic areas and content unique to caregivers and included input from key stakeholders. The next step is to develop the program for dissemination and to test its impact on caregiver and patient outcomes.
Purpose/objective: This commentary demonstrates the need for culturally adapted interventions to support informal caregivers (care partners) of adults with traumatic brain injuries (TBI), proposes and supports an evidence-based intervention, Problem-Solving Training (PST), uniquely suitable for cultural adaptation for Latinx care partners, and describes several considerations and concrete suggestions for initial cultural adaption of PST for Latinx care partners of adults with TBI.; Results: Caregiving among Latinxs is rooted in cultural values and norms that may facilitate or challenge family coping and adaptation after TBI in the United States. Evidence-based interventions to address emotional distress, health, and caregiver burden are needed for Latinx care partners, but must first be translated and adapted to address language and cultural values. Compared with other cognitive and behavioral evidence-based interventions, PST is ideal for cultural adaptation, as the problem-solving process is driven by, and therefore sensitive and responsive to, care partners and their individual values and situations.; Conclusions/implications: Adapting evidence-based problem-solving interventions like PST ("Descubriendo Soluciones Juntos") to be culturally tailored and culturally sensitive for Spanish-speaking Latinx care partners of adults with TBI could reduce existing health disparities and improve the health, well-being, and quality of life of these care partners.
Background The START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective. Aims To assess the clinical effectiveness over 6 years and the impact on costs and care home admission. Method We conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission. Results In total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference -2.00 points, 95% CI -3.38 to -0.63). Patient-related costs (START versus TAU, respectively: median 5759 pound v. 16 pound 964 in the final year; P = 0.07) and carer-related costs (median 377 pound v. 274 pound in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58-1.35). Conclusions START is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers. Declarations of interest G.L., Z.W. and C.C. are supported by the UCLH National Institute for Health Research (NIHR) Biomedical Research Centre. G.L. and P.R. were in part supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart's Health NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Z.W. reports during the conduct of the study; personal fees from GE Healthcare, grants from GE Healthcare, grants from Lundbeck, other from GE Healthcare, outside the submitted work.
Objectives: The study examined the effects of a telephone-administered psycho-education with behavioral activation intervention (TBA) for family caregivers of person's with Alzheimer's dementia to reduce levels of depressive symptoms and burden and to enhance relationship satisfaction with the care-recipient METHODS: A double-blinded randomized trial compared TBA with telephone-based psycho-education with general monitoring (TGM). Ninety-six dementia caregivers were randomized. Both conditions received four weekly psycho-education sessions led by a social worker. TBA participants then received eight bi-weekly behavioral activation practice sessions delivered by paraprofessionals. TGM participants received eight bi-weekly monitoring sessions by paraprofessionals.; Results: As compared to TGM, TBA participants reported significantly larger reductions in depressive symptoms and burden and larger improvement in relationship satisfaction. Self-efficacy for controlling upsetting thoughts was found to have a partial meditation effect between TBA and the reduction of depressive symptoms. Qualitative feedback suggested that TBA participants expressed unique gains in awareness and developing new ways of reappraising the caregiving situation.; Conclusion: TBA was an effective intervention to reduce depressive symptoms and burden as well as to enhance relationship satisfaction in dementia caregivers.; Practice Implications: The use of telephone and trained paraprofessionals can enhance the accessibility and sustainability of behavioral activation intervention for dementia family caregivers.
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.
Cancer-related pain is prevalent and has debilitating effects on patients and their family. The effects of cancer pain can be curtailed if the family members caring for the patient receive essential support to enhance their capabilities for cancer pain management. Little has been done to study the available support to family caregivers (FCGs) towards pain management in adult cancer patients (ACPs) living in resource-limited countries where the burden of cancer is on the rise. This study evaluated the influence of an education intervention delivered in the home setting on FCGs' knowledge and self-efficacy (SE) for pain management in ACPs. One-group pre-/post-test design was used in a sample of 54 FCGs who had been caring for ACPs suffering from pain for at least 1 month. Data were collected using the Family Pain Questionnaire and Caregiver Pain Management SE Scale. The FCGs' mean knowledge score post-intervention (26.69 ± 10) was higher than the baseline (45 ± 12.9), and the difference was statistically significant (t = 10.382, p = 0.000, CI = 17.12-25.43). Additionally, the FCGs' mean SE score post-intervention (1003.30 ± 191) was higher than the baseline (648.3 ± 273.4), and the difference was statistically significant (t = - 8.52, p = 0.000, CI = - 438.6-- 271.4). The home-based education intervention significantly and positively influenced the FCGs' knowledge and SE for pain management while at home. Cancer pain management educational interventions delivered at home should be considered as one of the strategies for enhancing cancer care in resource limited settings.
Objective: To assess for the validity of a future trial, the current feasibility study aimed to compare the feasibility and efficacy of a web‐ and workshop‐based education intervention for caregivers of adults with eating disorders. Methods: Psychoeducation was provided to caregivers, who were randomly assigned to a web or workshop condition. Independent samples t tests were conducted to analyse the between‐group effect sizes for intervention condition with regard to change over time. A random selection of participants from each intervention provided qualitative feedback about their experiences. Results: Overall, participants reported positive experiences in both education interventions. From baseline to the end of intervention, small between‐group effect sizes were observed for changes in caregiver accommodation, problem‐solving abilities, the quality of psychological health, and the quality of social relationships, favouring the web‐based intervention, and changes in expressed emotion in the family context, caregiver burden, perceived stress, and the quality of the environment, supporting the workshop intervention. Conclusions: There was a difference in initial feasibility of the web intervention. A future large‐scale trial of these interventions is supported by the results of this feasibility study.
Objective: To evaluate the effectiveness of Helping Invested Families Improve Veterans' Experiences Study (HI-FIVES), a skills training program for caregivers of persons with functional or cognitive impairments. Design: A two-arm RCT. Setting: Single Veterans Affairs Medical Center. Participants: Patients and their primary caregivers referred in the past 6 months to home and community-based services or geriatrics clinic. Intervention: All caregivers received usual care. Caregivers in HI-FIVES also received five training calls and four group training sessions. Main Measures: Cumulative patient days at home 12 months post-randomization, defined as days not in an emergency department, inpatient hospital, or post-acute facility. Secondary outcomes included patients' total VA health care costs, caregiver and patient rating of the patient's experience of VA health care, and caregiver depressive symptoms. Results: Of 241 dyads, caregivers' (patients') mean age was 61 (73) years, 54% (53%) Black and 89% (4%) female. HI-FIVES was associated with a not statistically significant 9% increase in the rate of days at home (95% CI 0.72, 1.65; mean difference 1 day over 12 months). No significant differences were observed in health care costs or caregiver depressive symptoms. Model-estimated mean baseline patient experience of VA care (scale of 0-10) was 8.43 (95% CI 8.16, 8.70); the modeled mean difference between HI-FIVES and controls at 3 months was 0.29 (p = .27), 0.31 (p = 0.26) at 6 months, and 0.48 (p = 0.03) at 12 months. For caregivers, it was 8.34 (95% CI 8.10, 8.57); the modeled mean difference at 3 months was 0.28 (p = .18), 0.53 (p < .01) at 6 months, and 0.46 (p = 0.054) at 12 months. Conclusions: HI-FIVES did not increase patients' days at home; it showed sustained improvements in caregivers' and patients' experience of VA care at clinically significant levels, nearly 0.5 points. The training holds promise in increasing an important metric of care quality-reported experience with care.
Background: Present demographic trends show a considerable rise in elderly populations with aging disorders, such as dementia. The current article focused on the exploitation of e-learning as an informal support for caregivers of people with dementia and considered its benefits and limitations to provide proper and relevant care for this target group of people as well as maintain the quality of life of their caregivers.; Methods: The methodology of this study is based on a literature review of accessible peer-review articles from three recognized databases: Web of Science, Scopus, and PubMed. The findings of the selected studies were compared and evaluated.; Results: The findings showed that e-learning educational programs/courses helped caregivers feel more confident about dementia care, reduced their perceived stress and enhanced their feelings of empathy, understanding and concern.; Conclusions: The findings of this study reveal that the exploitation of e-learning as a support tool, especially for informal caregivers, in the management of dementia may be a promising method, but its implementation requires professional training of informal caregivers in the use of this technology. More evidence-based studies are needed on this topic.
Purpose: As an intermediate prodromal stage of dementia, mild cognitive impairment (MCI) causes functional, emotional, and social challenges for both of the person with MCI (PwMCI) and their family caregiver. However, major attention has only been placed on the PwMCI's for cognitive training. This study evaluated a more comprehensive intervention, which integrated both strength-based and empowerment approaches, to address their complex needs in a dyadic fashion.; Patients and methods: This randomized controlled trial allocated 103 MCI patient-caregiver dyads to receive a 14-week dyadic strength-based empowerment program (D-StEP-MCI, n=52) or usual care (n=51). The D-StEP-MCI program consisted of group-based session to the PwMCI, home-based dyadic sessions, and telephone follow-up, with the activities supported the care dyads to navigate their own strengths and resources for integration, together with the trained skills, to optimize role and social engagement in everyday life. Dyadic health outcomes in terms of subjective and objective cognitive function, and neuro-psychiatric symptoms of PwMCI, stress in symptom management of their family caregivers, and depression of the dyads were evaluated at baseline, after the D-StEP-MCI and at 3 months thereafter.; Results: By using general estimating equation, the D-StEP-MCI significantly improved the cognitive function, subjective memory, and mood status of the PwMCI, and the positive changes were maintained at the 3-month endpoints. It also has significantly positive effects on caregivers' stress in symptom management and level of depression.; Conclusion: Our findings showed the health benefit of combining strength-based and empowerment approach in supporting the disease adaptation of PwMCI and caregiver in a dyadic fashion. This study also supports the use of a social interaction approach to optimize the everyday engagement of the PwMCI.
Background: Continuing care of an elderly patient with Alzheimer's disease may result in psychosocial and physical disorders in family caregivers, as well as limitations to providing complete care. Objectives: The aim of the present study was to determine the effectiveness of resilience education in the mental health of family caregivers of elderly patients with Alzheimer's disease. Methods: This study followed a randomized, clinical trial design. The study population consisted of family caregivers of elderly patients with Alzheimer's disease who referred to hospitals and neurologists' offices located in the western cities of Mazandaran province, Iran. Data were collected between 2016 and 2017. Fifty-four family caregivers were recruited through convenience sampling and randomized into control and intervention groups (27 in each group). Demographic characteristics, Connor-Davidson Resilience Scale, and General Health Questionnaire were used for data collection. Resilience education was provided in eight sessions (45 min each) using PowerPoint presentations and educational pamphlets. The mental health scores were calculated using the indices including normality tests and analyzed using the independent and paired t-tests, analysis of variance (ANOVA), and Bonferroni test. Results: An independent t-test showed improvements in the mental health status of those who received the educational intervention (mean difference: 23.8±6.4; P < 0.001). The independent t-test also indicated statistically significant differences between the groups' anxiety/insomnia (8.8±2.3 versus -0.12±2.5), somatic symptoms (7.2±2.2 versus -0.9±1.03), social dysfunction (4.5±2.9 versus 0.2±1.3), and depression (3.2±2.2 versus -0.08±0.6; P < 0.001). Conclusions: Resilience education successfully improved the mental health of family caregivers. Therefore, it is suggested that healthcare providers, Alzheimer's associations, andNGOsprovide educational interventions to help promote the caregivers' mental health.
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.;
Purpose: This study aimed to refine a behavioral sleep intervention program targeting patients with Alzheimer's disease and their caregivers. Methods: In this case series, key components of the sleep program were built upon previous intervention studies of patients with cognitive impairment/dementia. The intervention consisted of five weekly sessions covering sleep hygiene, sleep compression, stimulus control, daily walking/light exposure, relaxation/mindfulness, and caregiver training to manage patients' behavioral problems. The materials and structure were iteratively refined based on feedback from caregivers and sleep educators. Sleep diaries were used to evaluate sleep outcomes. Results: Five out of six enrolled dyads completed the sessions. Several revisions were made during testing: the last session was changed from telephone to in-person; some components (e.g., sleep scheduling, mindfulness) were rearranged within or across sessions; sleep educator guidelines for sleep scheduling, light exposure, and walking were revised. After the fifth dyad, no additional issues were identified by the caregiver or the sleep educator. Four patients and three caregivers had improved sleep at the last session. Conclusions: The iterative refinement process was successful in finalizing the intervention program, with evidence of sleep improvements. Formal pilot testing of the program will provide further information on feasibility and effectiveness. IMPLICATIONS FOR REHABILITATION Our dyadic behavioral sleep program can be tailored to various types of sleep problems among patients with Alzheimer's disease and their family caregivers, with the goal of improving daytime function by reducing sleep disturbances at night. Caregiver training and participation of both members of the dyad in sleep management may benefit the patients' sleep and other health outcomes, reduce caregiver stress and burden, and ultimately delay or prevent institutionalization of Alzheimer's disease patients.
Background and Objectives The Savvy Advanced psychoeducation program was designed for previously trained caregivers of persons living with dementia to refine their problem-solving and planning skills and enhance their sense of self-efficacy as dementia progressed for the care recipient. Implementation, feasibility, participant satisfaction, and perceived program benefits were also evaluated. Research Design and Methods A total of 100 dementia family caregivers participated in the 12-month evaluation of Savvy Advanced. A pragmatic quasi-experimental no control design was used to examine changes in caregiver self-efficacy, competence, personal gain, skill mastery, and symptoms of depression from baseline to 5 and 12 months postintervention. Implementation feasibility, and participant satisfaction and perceived program benefits, were also evaluated. Results Having previously participated in a psychoeducation intervention, caregivers were quickly engaged and interactive. Caregivers demonstrated significant improvement in competence, personal gain, self-efficacy, and symptoms of depression at 5 months postprogram. Gains were sustained for competence and personal gain at 12 months. Caregivers were highly satisfied with the program and supporting materials. Challenges to implementation included caregiver recruitment and trainer sustainability. Discussion and Implications Caregivers can benefit from episodic interventions as their situation changes and new challenges arise. Savvy Advanced is one means to address these needs. Evaluation in a randomized trial is required to establish efficacy; examination of alternative modes of delivery for caregivers unable to attend in person is warranted.
Background The increase in the number of people with dementia in the coming years will be significant and could be as high as 132,000 people by 2041. There is a growing need for enhanced post diagnostic supports for patients living with dementia and their families. We identified the need for a localised educational resource for families and supportive others attending our specialist memory service Methods Staff from the Integrated Care Team, Specialist Memory Service and Primary Care were trained by the Alzheimer's Society of Ireland to deliver a 6 week 'Insights Into Dementia' carers course. Tutors and dementia advisors from the Alzheimer's Society of Ireland provided in-depth training prior to course delivery and feedback to the facilitators on a weekly basis. The course included advice and education on Dementia; Changing Relationships, Communication; Responding to changes in behaviour; Nutrition; Engaging in activities; Assisting with personal care and Safety in the home. Families gained advice regarding their self-care needs and learned how to access information and support. All services involved worked together to identify, refer and support families with dementia in the local area. The group took place in an accessible location at a time which accommodated families to attend. Each course attendee completed a questionnaire prior to and after commencing the group. Results The group has delivered education and support to 48 families to date. Feedback from participants was very positive with self-reported increase in confidence, knowledge and awareness about dementia. Waiting time to access support has significantly decreased. Every course has led to a support group who meet up on a regular basis in their community. Conclusion This novel collaboration has become a key part of the integrated care pathway we have developed to support people living with dementia and their supportive others in our catchment area. The Integrated Care approach has served to enrich the programme and allow for timely signposting to localised supports.
Background: Caregivers frequently provide support to people living with long-term conditions. However, there is paucity of evidence of interventions that support caregivers in their role. Rehabilitation EnAblement in Chronic Heart Failure (REACH-HF) is a novel home-based, health-professional-facilitated, self-management programme for patients with heart failure (HF) and their caregivers. Methods: Based on the random allocation of individual adult patients with reduced ejection fraction (HFrEF) and left ventricular ejection fraction <45% within the past five years, the caregiver of patients was allocated to receive the REACH-HF intervention over 12 weeks (REACH-HF group) or not (control group). Caregiver outcomes were generic health-related quality of life (EQ-5D-5L), Family Caregiver Quality of Life Scale questionnaire (FamQol), Caregiver Burden Questionnaire HF (CBQ-HF), Caregiver Contribution to Self-care of HF Index questionnaire (CC-SCHFI) and Hospital Anxiety and Depression Scale (HADS). Outcomes were compared between groups at 4, 6 and 12 months follow-up. Twenty caregivers receiving REACH-HF were purposively selected for qualitative interviews at 4 and 12 months. Results: Compared with controls (44 caregivers), the REACH-HF group (53 caregivers) had a higher mean CC-SCHFI confidence score at 12 months (57.5 vs 62.8, adjusted mean difference: 9.3, 95% confidence interval: 1.8–16.8, p = 0.016). No significant between group differences were seen in other caregiver outcomes. Qualitative interviews showed that most caregivers who received the REACH-HF intervention made positive changes to how they supported the HF patient they were caring for, and perceived that they had increased their confidence in the caregiver role over time. Conclusion: Provision of the REACH-HF intervention for caregivers of HF patients improved their confidence of self-management and was perceived for some to be helpful in supporting their caregiver role.
Background: A diagnosis of cancer, specifically a brain neoplasm, can be daunting and confusing to patients and their family members. It is important to find ways to provide education about diagnosis, symptoms, medications, treatment, and side effects in a usable and retrievable format. Objectives: The aim of this study was to examine the impact of the following three teaching strategies on patients’ knowledge and understanding of their diagnosis: standard of care (SOC), which includes a generic folder of information (strategy 1); tailored paper binder (strategy 2); or SOC plus Technology Enhanced Active Learning (TEAL) (strategy 3). Methods: This was a prospective pre-/post-test pilot study including patients who had been diagnosed with brain neoplasms. Findings: Among 30 patients enrolled during a seven-month period, those who received strategy 3 had higher mean post-test knowledge scores compared to those who received strategy 1 or 2, but the difference was not statistically significant. The results suggest that TEAL-reinforced education is helpful for keeping appointments and may be associated with better knowledge retention regarding disease process and medications. In addition, fewer calls were made to the healthcare team in the strategy 3 group compared to the strategy 1 and 2 groups.
Introduction The presence in the home of a dependent family member is a problematic situation for the whole family. By implementing training programs it is possible to achieve health gains and improve care management, as well as increase the capacity to seek information and take responsibility. Objectives To synthesize the effects of training programs of the informal caregiver in a home context in their quality of life. Methods Integrative review of the literature carried out during the month of March 2019, in the databases: Scielo, Mediclatina, Scopus, Cinahl and Medline, through the PICO methodology, whose guiding question was: “What are the effects caused on the quality of life by... [The remainder of the abstract is not freely accessible]
Purpose We describe an approach to rapidly adapt and implement an education and skills improvement intervention to address the needs of family caregivers of functionally impaired veterans-Helping Invested Families Improve Veterans' Experience Study (HI-FIVES). Design Prior to implementation in eight sites, a multidisciplinary study team made systematic adaptations to the curriculum content and delivery process using input from the original randomized controlled trial (RCT); a stakeholder advisory board comprised of national experts in caregiver education, nursing, and implementation; and a veteran/caregiver engagement panel. To address site-specific implementation barriers in diverse settings, we applied the Replicating Effective Programs implementation framework. Findings Adaptations to HI-FIVES content and delivery included identifying core/noncore curriculum components, reducing instruction time, and simplifying caregiver recruitment for clinical settings. To enhance curriculum flexibility and potential uptake, site personnel were able to choose which staff would deliver the intervention and whether to offer class sessions in person or remotely. Curriculum materials were standardized and packaged to reduce the time required for implementation and to promote fidelity to the intervention. Conclusions The emphasis on flexible intervention delivery and standardized materials has been identified as strengths of the adaptation process. Two key challenges have been identifying feasible impact measures and reaching eligible caregivers for intervention recruitment. Clinical Relevance This systematic implementation process can be used to rapidly adapt an intervention to diverse clinical sites and contexts. Nursing professionals play a significant role in educating and supporting caregivers and care recipients and can take a leading role to implement interventions that address skills and unmet needs for caregivers.
Family caregivers make important contributions to home health care for older adults, but knowledge of the specific roles they assume is lacking. We analyzed data from 1,758 community-dwelling Medicare beneficiaries aged 65+ receiving Medicare-funded home health care between 2011 and 2016, using linked National Health and Aging Trends Study and Outcomes and Assessment Information Set data. Most (86.7%) beneficiaries receiving home health care had an identified need for family caregiver assistance, and nearly 6 in 10 (57.9%) had identified need for caregiver assistance with five or more tasks. After examining significant associations between older adult characteristics and identified needs for caregiver assistance with specific tasks, we identified three profiles of older adults who demonstrate similar patterns of identified need for family caregiver assistance during home health. These profiles include: (1) older adults with greater functional impairment who more often had identified need for assistance with Instrumental Activities of Daily Living, advocacy, or Activities of Daily Living; (2) older adults with cognitive impairment who more often had identified need for assistance with medication administration or supervision; and (3) older adults with greater clinical severity who more often had identified need for assistance with medical procedures and equipment. Findings support calls to develop training interventions and strengthen the partnership between home health providers and family caregivers. These three profiles present a potential framework for the development of family caregiver training programs.
Introduction Pharmacological interventions to address behavioural and psychological symptoms of dementia (BPSD) can have undesirable side effects, therefore non-pharmacological approaches to managing symptoms may be preferable. Past studies show that music therapy can reduce BPSD, and other studies have explored how formal caregivers use music in their caring roles. However, no randomised study has examined the effects on BPSD of music interventions delivered by informal caregivers (CGs) in the home setting. Our project aims to address the need for improved informal care by training cohabiting family CGs to implement music interventions that target BPSD, and the quality of life (QoL) and well-being of people with dementia (PwD) and CGs. Methods and analysis A large international three-arm parallel-group randomised controlled trial will recruit a sample of 495 dyads from Australia, Germany, UK, Poland and Norway. Dyads will be randomised equally to standard care (SC), a home-based music programme plus SC, or a home-based reading programme plus SC for 12 weeks. The primary outcome is BPSD of PwD (measured using the Neuropsychiatric Inventory-Questionnaire). Secondary outcomes will examine relationship quality between CG and PwD, depression, resilience, competence, QoL for CG and QoL for PwD. Outcomes will be collected at baseline, at the end of the 12-week intervention and at 6 months post randomisation. Resource Utilisation in Dementia will be used to collect economic data across the life of the intervention and at 6-month follow-up. We hypothesise that the music programme plus SC will generate better results than SC alone (primary comparison) and the reading programme plus SC (secondary comparison). Ethics and dissemination Ethical approval has been obtained for all countries. Results will be presented at national and international conferences and published in scientific journals and disseminated to consumer and caregiver representatives and the community. Trial registration numbers ACTRN12618001799246p; NCT03907748
Purpose: A randomized controlled trial was conducted to test the effectiveness of the Support, Health, Activities, Resources, and Education Program. This six-session psycho-educational program provides dyadic counseling for individuals in the early stages of dementia and their family caregivers. The goal is to prevent common problems in care that emerge during the course of dementia by (1) actively engaging the person with dementia in developing a balanced plan of future care with his/her caregiver, (2) increasing use of available services, (3) enhancing dyadic relationship functioning, (4) improving well-being, and (5) evoking satisfaction with components of the intervention. Design and methods: Persons with early stage dementia (n = 128) and their caregivers (n = 128) were randomly assigned either to Support, Health, Activities, Resources, and Education Program or a control condition. Intervention efficacy was evaluated for completion of a care plan, use of services, dyadic relationship functioning, participant well-being, and program satisfaction. Results: Dyads in the treatment condition were able to construct a balanced care plan and increased their use of services. Dyadic functioning improved for one dimension (decreased emotional disruptions). Compared to the control condition, satisfaction with the intervention was higher for caregivers enrolled in Support, Health, Activities, Resources, and Education Program on four of five dimensions and one dimension for persons with dementia. Implications: Support, Health, Activities, Resources, and Education Program is a promising prevention approach that takes advantage of the early stage of dementia when both members of the dyad can participate fully in making decisions about later care.
Vietnamese American dementia caregivers are at increased risk for adverse mental health compared to the general U.S. population given their sociodemographic and immigration experiences, yet programs that address their needs are lacking. The current article describes Vietnamese American dementia caregivers' perceptions and experiences of a culturally tailored, evidence-based intervention to reduce stress and depression. A convenience sample of caregivers was recruited from the San Francisco Bay area and randomly assigned to intervention (“Our Family Journey”; OFJ) (n = 30) or control (written dementia caregiving information) (n = 30) groups. All intervention and 76.7% of control caregivers reported that the OFJ or educational materials, respectively, were very/somewhat helpful. Three or more skills were refined/learned by 96.7% of OFJ and 36.6% of control participants. Qualitative findings indicated that the intervention had positive effects on well-being and taught new caregiving skills. This first U.S. study to address the mental health needs of Vietnamese American dementia caregivers shows positive perceptions/experiences and demonstrates a model to address a significant need in the community.
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.
Purpose The purpose of this paper is to evaluate the effect of the planned pre-electroconvulsive therapy (ECT) family teaching on depression, anxiety and stress of caregivers of patients with mental disorders receiving ECT. Design/methodology/approach In this quasi-experimental study, 130 participants were randomized allocated into intervention or control groups. The planned family teaching program consisted of four 90 min sessions held during four weeks. Assessments occurred at pre-intervention (one week before the first session), and post-intervention (one months after the four session). Data were collected using demographic questionnaire and Depression, Anxiety and Stress Scale (DASS-21). Mean comparisons were performed using Student’s t-test while effect sizes were estimated by Cohen’s d coefficient. The significance level was considered less than 0.05. Findings The mean scores of the depression, anxiety and stress levels in the intervention group were significantly reduced compared to the control group (p=0.001). Originality/value The family pre-ECT teaching intervention and counseling decreased the depression, anxiety and stress level of family caregivers of patients with mental disorders receiving ECT and the maintenance of other favorable conditions at baseline. These results suggest that even a short-term educational intervention for family members of patients received ECT can improve emotional outcomes of treatment in the family.
Family caregivers can benefit from education-based wellness programs, but many face barriers to attending such programs. The purpose of this research was to explore telehealth as a delivery format for an education-based caregiver wellness program. This qualitative research examined the caregiver experience of a specific program called Powerful Tools for Caregivers (PTC). The traditionally in-person program was delivered via telehealth in four states. Twelve caregivers participated in focus groups the week after completing the telehealth PTC program. Three major themes emerged from the focus groups: Knowledge Gained, Interrelatedness, and Technology Pros and Cons. All affirmed a positive experience of the telehealth delivered PTC program. Participants expressed gratitude for the opportunity to participate in the program and knowledge gained including relaxation techniques, communication skills, resources to support caregiving, and goal setting for self-care. Furthermore, participants were appreciative of the opportunity to connect with other caregivers from the comfort of their home.
Background: Persons with chronic heart failure are living longer. These patients typically live in the community and are cared for at home by informal caregivers. These caregivers are an understudied and stressed group. Methods: We are conducting a two-arm, randomized controlled trial of 250 caregivers of persons with chronic heart failure to evaluate the efficacy of a health coaching intervention. A consecutive sample of participants is being enrolled from both clinic and hospital settings at a single institution affiliated with a large medical center in the northeastern US. Both the intervention and control groups receive tablets programmed to provide standardized health information. In addition, the intervention group receives 10 live coaching sessions delivered virtually by health coaches using the tablets. The intervention is evaluated at 6-months, with self-care as the primary outcome. Cost-effectiveness of the intervention is evaluated at 12-months. We are also enrolling heart failure patients (dyads) whenever possible to explore the effect of caregiver outcomes (self-care, stress, coping, health status) on heart failure patient outcomes (number of hospitalizations and days in the hospital) at 12-months. Discussion: We expect the proposed study to require 5 years for completion. If shown to be efficacious and cost-effective, our virtual health coaching intervention can easily be scaled to. support millions of caregivers worldwide.
Family carers encounter several challenges related to caring for people with dementia, and they need support in managing care recipients’ health needs. This study aims to identify, appraise and synthesise the existing evidence on the use of mHealth/smartphone applications as an educational and supportive resource for family carers of people with dementia. An integrative literature review approach was used. Seven databases were searched. The search generated 117 articles, with seven meeting the inclusion criteria. Three categories and their attendant sub-categories emerged from the literature. The categories are ‘carer support’, ‘evaluation strategies’ and ‘barriers and challenges’. mHealth applications appear to be a feasible intervention for family carers of people with dementia despite the limited available research and barriers for their development and implementation. Further research on mHealth applications with strong methodological rigour and more research on mHealth applications as an educational and supportive resource for carers of people with dementia are needed.
The development of iSupport was funded by a grant from the Alzheimer Association US, the Ministry of Health, Welfare and Sport in the Netherlands, and Alzheimer Disease International. The authors alone are responsible for the views expressed in this letter and they do not necessarily represent the views, decisions or policies of the institutions with which they are affiliated. The iSupport development team included E. Albanese, N. Batsch, U. Baruah, K. Edwards, K. Egan, D. Gallagher‐Thompson, M. Guerra, J. Holroyd‐Leduc, T. Kwok, K. Mehta, M. Prins, S. Loganathan, I. Rosier, P. Shivakumar, I. van Asch, M. Varghese, H. Wang, B. Willemse, M. Wortmann and L. Xiao. The WHO Secretariat included A. Brunier, K. Carswell, T. Dua, A.M. Pot, D. Rekve, K. Seeher, M. van Ommeren, S. Saxena and D. Zandi.
Objective: To test the effects of Life Enhancing Activities for Family Caregivers (LEAF), a 6-week positive emotion regulation intervention, on outcomes of positive emotion, depression, anxiety, and physical health as measured by the Patient-Reported Outcomes Measurement Information System® (PROMIS®). Method: A randomized controlled trial (N 170) comparing LEAF (N 86) to an emotion reporting/waitlist condition (N 84) in dementia caregivers. LEAF was individually delivered online by trained facilitators. Participants in the control condition completed daily online emotion reports and then crossed over into the intervention condition after 6 weeks. The study was registered with Clinicaltrials. gov (NCT01825681) and funded by R01NR014435. Results: Analyses of difference in change from baseline to 6 weeks demonstrated significantly greater decreases in PROMIS® depression (d <.25; p.02) and Quality of Life in Neurological Disorders (NeuroQOL) anxiety (d <.33; p-.01), as well as improvements in PROMIS® physical health (d.24; p.02) in the intervention condition compared to the emotion reporting/waitlist control. The intervention also showed greater improvements in positive emotion (d.58; p-.01) and positive aspects of caregiving (d.36; p-.01). Increases in positive emotion significantly mediated the effect of LEAF on depression over time. Conclusions: This randomized controlled trial of the online-facilitated positive emotion regulation intervention in dementia caregivers demonstrated small to medium effect sizes on caregiver well-being and shows promise for remotely delivered programs to improve psychological well-being in caregivers of people with dementia and other chronic illnesses.
Building Better Caregivers (BBC), a community 6-week, peer-led intervention, targets family caregivers of those with cognitive impairments. BBC was implemented in four geographically scattered areas. Self-report data were collected at baseline, 6 months, and 1 year. Primary outcome were caregiver strain and depression. Secondary outcomes included caregiver burden, stress, fatigue, pain, sleep, self-rated health, exercise, self-efficacy, and caregiver and care partner health care utilization. Paired t tests examined 6 month and 1-year improvements. General linear models examined associations between baseline and 6-month changes in self-efficacy and 12-month primary outcomes. Eighty-three participants (75% of eligible) completed 12-month data. Caregiver strain and depression improved significantly (Effect Sizes =.30 and.41). All secondary outcomes except exercise and caregiver health care utilization improved significantly. Baseline and 6-month improvements in self-efficacy were associated with improvements in caregiver strain and depression. In this pilot pragmatic study, BBC appears to assist caregivers while reducing care partner health care utilization. Self-efficacy appears to moderate these outcomes.
Background: Caring for people with dementia (PWD) is stressful and poses many life challenges for the family caregivers. Interventions targeting the stress and psychological well-being of the caregivers have been proposed but the sustainable effects and efficacies of these interventions vary considerably. Mindfulness-based cognitive therapy (MBCT) has been shown to be effective at reducing stress in several populations. However, limited research on the effects of MBCT in family caregivers of PWD has been conducted. This study protocol aims to examine the effects on stress reduction of a modified MBCT for family caregivers of PWD. Methods: A prospective, single-blind, parallel-group, randomized controlled trial will be adopted. A convenience sample of 100 community-dwelling family caregivers of PWD will be randomized to either the modified MBCT or the control groups. The modified MBCT group will receive a 10-week, seven-session, group-based modified MBCT whereas the control group will receive a social interaction and routine education (SIRE) on dementia care program at a frequency and timing similar to those in the intervention group. The primary outcomes (stress) and secondary outcomes (depression, anxiety, burden, health-related quality of life, and the behavioral and psychological symptoms of the care recipient) will be measured immediately post-intervention (T1) and at 6-month follow-up (T2), which will be compared with the baseline (T0). Discussion: Reducing the stress of caregiving can promote the well-being of the family caregivers and maintain their sustainability in providing daily care for their family members with dementia. MBCT is found to be effective for stress reduction in other populations, and the results of this study are able to provide us with evidence for using MBCT as a standard supportive intervention for the family caregivers of PWD. Trial registration: ClinicalTrials.gov, NCT03354819. Registered on 28 November 2017.
Background: Caregivers of people with dementia experience high stress levels. Mindfulness-based cognitive therapy has been found to be effective in reducing stress and improving the psychological well-being of several populations. Objective: To explore the feasibility and preliminary effects of a modified mindfulness-based cognitive therapy for family caregivers of people with dementia. Methods: In a single-blinded, parallel-group, randomized controlled trial, 36 caregivers of people with dementia were randomized to either the intervention group, receiving the 7-session modified mindfulness-based cognitive therapy in 10 weeks; or the control group, receiving the usual family care and brief education on dementia care. The brief education sessions were similar in frequency and duration to the intervention group. Various psychological outcomes of caregivers were assessed and compared at baseline, immediately post-intervention, and at the 3-month follow-up. A focus group with eight participants from the intervention group was conducted to identify the strengths, limitations, and difficulties of the intervention. Results: Intervention feasibility was established with a high completion rate of 83% (completing ≥5 out of the 7 sessions) and a low attrition rate of 11.1%. The duration of the average weekly home-based mindfulness practice of the caregivers was 180 minutes (S.D. = 283.8). The intervention group experienced a statistically significant decrease in stress levels (Z = -1.98, p = 0.05, Cohen's d = 0.7) and depressive symptoms (Z = -2.25, p = 0.02, Cohen's d = 0.8) at the post-test; and a decrease in stress (Z = -2.58, p = 0.01, Cohen's d = 0.9), depressive symptoms (Z = -2.20, p = 0.03, Cohen's d = 0.7), and burden (Z = - 2.74, p = 0.006, Cohen's d = 1.0), and improved quality of life (physical) (Z = -1.68, p = 0.09, Cohen's d = 0.6) at the 3-month follow-up compared to the controls. A focus group conducted immediately after the intervention revealed three major themes: Impacts on the family caregivers, Impacts on the people with dementia, and Difficulty in practicing mindfulness. Conclusion: The findings support the feasibility and preliminary effects of the modified mindfulness-based cognitive therapy on reducing the stress of caregivers and improving their psychological well-being. Some potential effects on people with dementia (e.g., improvements in behavioral problems) were reported by the caregivers. A future study with a larger and more diverse sample is proposed to evaluate the longer-term effects and generalizability of the modified mindfulness-based cognitive therapy and the impacts on people with dementia.
Background: The raising of disability and chronic illness burden among European population is calling for a new paradigm of care, focused on primary health care interventions. Engage-In-Caring is a novel multicomponent intervention clearly dedicated to improve family caregiver engagement in the care of patients with complex care needs, by supporting them to develop a stronger consciousness of their role, needs and skills. Method: Engage-In-Caring intervention's efficacy and feasibility have been evaluated through a single arm pre-post observational pilot study settled in Rome. A qualitative phase, consisting of literature analysis of caregivers' unmet needs and a final revision from an experts' group, led to the structuration of the intervention, following the Caregiver Health Engagement Model (CHE-Model). Afterwards, a quantitative phase allowed understanding the feasibility of the intervention through Kruskal-Wallis test on a sample of 47 caregivers. Results: Results showed a reduction of the physical burden (Chi Squared = 6,483; p =.01) perceived by the caregivers and increase of the health literacy (Chi Squared = 3,560; p =.059) after the intervention. Conclusions: Feasibility tests on caregivers of patients with complex care needs are promising: this pilot study suggests a first effectiveness evidence, particularly concerning aspects related to burden perception and improvements in health literacy. Randomised controlled trials on larger samples are needed.
Background: People with intellectual disabilities (ID) are usually cared for by their own parents, families or informal caregivers. Caring for a person with ID can have a negative impact on caregivers' mental health (burden, depression, anxiety). The main aim of the EDUCA-IV trial was testing the efficacy of a psychoeducational intervention program (PIP) versus standard practice and to see whether the PIP intervention would reduce the caregiver's burden at post-intervention (4 months) and at follow-up (8 months). Method: This was a multi-centre randomised controlled trial including 194 caregivers (96 randomised to PIP, 98 to control condition). PIP intervention consists of 12 weekly group sessions. The control group received treatment as usual. Primary outcomes measured included the Zarit Burden Interview (ZBI). Secondary outcomes were caregivers' mental health (GHQ-28), anxiety (STAI) and depression (CES-D). Results: The decrease of ZBI scores was not significant at 4 months. There was significant decrease in the GHQ scores at 4 and 8 months. CES-D showed relevant results at follow-up. Intention to treat analyses showed similar results. Conclusions: The PIP intervention seems not to be effective reducing burden, but appears to have a positive result on general mental health. The program was well received and valued by caregivers.
Resources for Enhancing All Caregivers Health (REACH VA) is a behavioral intervention for caregivers of individuals with dementia disseminated in the VA. Although shown to improve caregiver and care recipient outcomes, some caregivers continue to experience depression or caregiver burden following the intervention. Factors that predict symptom remission following REACH VA are unknown. The present study investigated attachment, social support, and psychopathology as predictors of symptom remission for family caregivers who completed REACH VA. Caregivers who do not remit perceive lower levels of social support from loved ones, endorse poorer attachment quality, and have more personality disorder characteristics, particularly affective instability. These factors that impair caregivers’ abilities to be effectively attuned to the needs of their care recipients and to reap benefits from a brief and focused behavioral intervention such as REACH VA. Interventions that target caregiver interpersonal functioning and emotion regulation skills may be helpful to those who do not respond to REACH VA.
Introduction: In May 2010, the Caregivers and Veterans Omnibus Health Services Act of 2010, was signed into law in the United States, establishing the Program of Comprehensive Assistance for Family Caregivers (PCAFC) provided through the VA Caregiver Support Program (CSP). Prior to this program, over half of family caregivers reported being untrained for the tasks they needed to provide. The training through PCAFC represents the largest effort to train family caregivers in the U.S., and the features of the program, specifically a monthly stipend to caregivers and access to a Caregiver Support Coordinator at each VA medical center nationally, make it the most comprehensive caregiver support program ever enacted in the U.S. Methods: The purpose of this study is to examine the association between PCAFC participation and caregiver well-being following enrollment, comparing participating PCAFC caregivers to caregivers who applied to but were not approved for PCAFC participation (non-participants). Well-being is defined using three diverse but related outcomes: depressive symptoms, perceived financial strain, and perceived quality of the Veteran's health care. Additional well-being measures also examined include the Zarit Burden Inventory and positive aspects of caregiving. Results: The survey sample comprised of 92 caregivers approved for PCAFC and 66 caregivers not approved. The mean age of responding caregivers was 45; over 90% of caregivers were female; and over 80% of caregivers were married in both groups. We find promising trends in well-being associated with PCAFC participation. First, the perception of financial strain declined among participants compared to non-participants. Second, while depressive symptoms did not improve for the PCAFC caregivers, depressive symptoms increased among non-participants. Third, perceived quality of the Veteran's VA healthcare was no different between participants and non-participants. However, the 158 returned surveys reflect only a 5% response rate; hence this evidence is preliminary. Conclusion: Despite cautioning that results be interpreted as preliminary, this study provides unique descriptive information about young caregivers of U.S. post-9/11 Veterans, and offers a first step in filling the evidence gap about how comprehensive caregiver support in the U.S. may affect caregiver well-being. These preliminary findings should be explored and validated in a larger sample.
Objective: To describe the study protocol of the Multimedia Self-Management (MSM) intervention to prepare patients and family caregivers (FCGs) for lung cancer surgery.; Design: The study is a five-year, single site, randomized controlled trial of 160 lung cancer surgery FCG and patient dyads (320 total participants), comparing intervention and attention control arms.; Setting: One National Cancer-Institute (NCI) designated comprehensive cancer center in Southern California.; Participants: Patients who are scheduled to undergo lung cancer surgery and their FCGs are enrolled as dyads only.; Intervention: Based on the Chronic Care Self-Management Model (CCM), the intervention is a nurse-led, caregiver-based, multimedia care program for lung cancer surgery. Its primary focus is to help FCGs develop self-management skills related to their caregiving role through goal setting, proactive planning, building problem-solving skills, and accessing family support services. The intervention also supports dyads to prepare for surgery and post-operative recovery at home. It includes videos, print, web-based, and post-discharge telephone support.; Main Outcome Measures: FCG and patient psychological distress and QOL; FCG burden and preparedness for caregiving; FCG and patient healthcare resource use (in-home nursing care, urgent care/ER visits, readmissions).; Analysis: Repeated measures ANCOVA statistical design will be used, removing variances prior to examining mean squares for the group by occasion interactions, and co-varying the baseline scores. In addition, structured equation modeling (SEM) will assess whether mediating and moderating factors are associated with outcomes. ClinicalTrials.gov Identifier: NCT03686007.
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.
Introduction: Stroke is a major global health problem and second leading cause of death worldwide. In India, the incidence of stroke rate has increased from 56/100,000 person to 117/100,000 person. Stroke rehabilitation is an active process and begins during acute hospitalisation. Stroke survivors may return to an active and productive lifestyle through rehabilitation. Aim: To determine the effectiveness of Structured Teaching Programme (STP) on the knowledge about rehabilitation of stroke patients among caregivers. Materials and Methods: A pre-experimental pre-test, posttest research design was used to conduct this study. Purposive sampling was the sampling method used to collect data from family caregivers of stroke survivors on the basis of semistructured interview schedule. After collecting pre-test data, STP was organised for intervention of stroke rehabilitation to samples. Seven days were provided to the samples for utilising STP which was organised for 45-50 minutes through lecture, discussion and planned Audio-Visual (AV) aids. Posttest information was gathered after seven days from the day of teaching intervention. Seven days was assigned after getting expert opinions as well as to give time for implication of knowledge through practice of stroke rehabilitation. The sample characteristics were described by frequency, percentage and t-test was used to describe the difference between pre-test and post-test knowledge score. Chi-square test was also used to find out the association between knowledge of caregivers regarding stroke rehabilitations and selected demographic variables. Results: The mean pre-test knowledge score was 9.76 and mean post-test knowledge score was 14.7. There was a statistically significant improvement in the level of knowledge regarding stroke rehabilitations among caregivers (t0.001,29=3.659) and no association was found between pre-test knowledge level and selected demographic variables. Conclusion: The demand of stroke rehabilitation by involving family caregivers is increasing as it will help stroke patient to improve activity of daily livings as well as decrease disability and prevent complications.
Background/Aims: Pain is a major concern of patients with advanced cancer and their caregivers. There is strong evidence that pain coping skills training interventions based on cognitive-behavioral principles can reduce pain severity and pain interference. However, few such interventions have been tested for patients with advanced cancer and their family caregivers. This study aims to test the efficacy of a caregiver-guided pain coping skills training protocol on patient and caregiver outcomes. Methods: A total of 214 patients age ≥18 with Stage III–Stage IV cancer and moderate to severe pain, along with their family caregivers, are being identified and randomized with a 1:1 allocation to the caregiver-guided pain coping skills training intervention or enhanced treatment-as-usual. Dyads in both conditions receive educational resources on pain management, and the caregiver-guided pain coping skills training intervention includes three weekly 60-min sessions conducted with the patient–caregiver dyad via videoconference. Measures of caregiver outcomes (self-efficacy for helping the patient manage pain, caregiver strain, caregiving satisfaction, psychological distress) and patient outcomes (self-efficacy for pain management, pain intensity and interference, psychological distress) are collected at baseline and post-intervention. Caregiver outcomes are also collected 3 and 6 months following the patient's death. The study is enrolling patients from four tertiary care academic medical centers and one free-standing hospice and palliative care organization. The primary outcome is caregiver self-efficacy for helping the patient manage pain. Results: This article describes challenges in the design and implementation of the CaringPals trial. Key issues for trial design include the identification and recruitment of patients with advanced cancer and pain, and the follow-up and collection of data from caregivers following the patient's death. Conclusion: The CaringPals trial addresses a gap in research in pain coping skills training interventions by addressing the unique needs of patients with advanced cancer and their caregivers. Findings from this study may lead to advances in the clinical care of patients with advanced cancer and pain, as well as a better understanding of the effects of training family caregivers to help patients cope with pain.
Due to the increasing social and economic costs of dementia, there are urgent calls to develop accessible and sustainable care for people with dementia and their caregivers. Multi-component non-pharmacological interventions (NPIs) appear effective in improving or maintaining daily functioning and well-being, but are typically labour-intensive for health care professionals, thus hindering access. The current study aimed to explore the feasibility and acceptability of a novel approach to widen access to NPI by involving caregivers to present part of the intervention and with staff from local support organizations instructed to train the caregivers. Trainers and caregivers were shown to comply with training instructions and the direct intervention costs were low. Feedback from trainers and caregivers was positive and well-being ratings from people with dementia and caregivers remained stable over time and caregivers’ sense of competence improved. The findings suggest that involving caregivers and trained non-professionals to provide the intervention is feasible and acceptable and could be a cost-effective solution to improve access to care.
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.
OBJECTIVES: To evaluate the feasibility, acceptability, safety, and fidelity of a psychoeducational intervention to improve family caregiver technical and communication skills using structured simulations. SAMPLE & SETTING: 18 family caregivers of adult patients receiving radiation therapy for head and neck cancer at University Hospitals Seidman Cancer Center in Cleveland, Ohio. METHODS & VARIABLES: A two-group, randomized pilot trial design was used. The intervention consisted of four one-on-one sessions between the caregiver and nurse interventionist during the patient's first, second, fourth, and sixth week of radiation treatment. Participants completed measures of self-efficacy for caregiving, anxiety, depression, and health-related quality of life at baseline, during the fifth week of radiation therapy, and four weeks after radiation therapy. RESULTS: 4 of the 9 caregiver participants completed the intervention. Improvements in scores for the intervention group were noted for self-efficacy, global mental health, anxiety, and depression. IMPLICATIONS FOR NURSING: Refinement of the intervention is needed to improve feasibility. Although a caregiver intervention that incorporates simulation for skills training is acceptable and safe, flexibility in protocol is needed.
Aim: Brief psychoeducation for families of psychotic patients has been shown to significantly increase family members' knowledge of the disorder. This increase is associated with reductions in relapse and rehospitalization. The aim of this study was to assess the effectiveness of brief psychoeducation about schizophrenia to caregivers of patients in early phases of psychotic disorders in Yogyakarta, Indonesia.; Methods: This study was a prospective, randomized trial with 2 parallel groups. Subjects were patients in the early phase of psychotic disorders and their respective caregivers. Inclusion criteria included a diagnosis of acute and transient psychotic disorders, schizophrenia, schizoaffective disorder or delusional disorder. Participants were randomly assigned to either control or intervention groups by means of paired simple randomization. A brief psychoeducation was conducted for both the patients and caregivers. The interventions were conducted in 4 interactive sessions, once per week. Effectiveness was measured using standardized instruments before the intervention, and at 1 and 6 months post-intervention. Assessment instruments included the Knowledge of Psychosis (KOP), the Compliance and Relapse Assessment, the Brief Psychiatric Rating Scale and the Positive and Negative Symptoms of Schizophrenia scale.; Results: Interventions improved KOP scores significantly in the intervention group. The intervention group had increased regularity of follow-up with health providers and improved compliance. No statistically significant difference in relapses/rehospitalization was observed.; Conclusions: This study demonstrated that brief psychoeducation with caregivers of patients with early phase psychosis was feasible in our setting, significantly improved caregivers' knowledge, and resulted in improved regularity of contact with health providers and compliance with pharmacotherapy.
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.
Objectives: Based on recent shifts in reimbursement for cancer treatment from fee-for-service to bundled and value-based payment, this concluding article summarizes data from these papers and the large body of literature on caregiving to suggest how caregiving research might be redirected to link the formal with the informal systems to achieve higher-quality and lower-cost care. Caregiver dyads, the tasks of care, and strategies for training are presented.; Data Sources: Articles in this issue of Seminars in Oncology Nursing, the larger body of caregiving literature, and the Oncology Care Model driving bundled payments and value-based care.; Conclusion: Research on informal caregiving for cancer patients should begin to reframe the rich body of evidence available toward a focus on caregivers reactions to the tasks of care, the training necessary for caregivers to perform them, and how each contributes to quality care at lower costs and appropriate outcomes given patients' stage of disease and goals of treatment.; Implications For Nursing Practice: Oncology systems must take a more active role in including patients and their families as partners to manage treatments and side effects to achieve the best possible patient outcomes. They must be able to evaluate the patient and the caregiver to determine what tasks they will be able to perform, and then make sure they have the training and resources to carry out those tasks. Training could be done by social media and through communication using patient portals that could be expanded through the electronic medical records to include caregiver portals, enabling caregiver questions and reports of patients' conditions.
There are over five million people in the United States living with dementia. Most live at home and are cared for by family. These family caregivers often assume care responsibilities without education about the disease, skills training, or support, and in turn become at risk for depression, burden, and adverse health outcomes when compared to non-dementia caregivers. Despite over 200 caregiver interventions with proven benefits, many caregivers lack access to these programs. One approach to enhance access is to embed evidence-based caregiver support programs in existing community-based services for people with dementia such as adult day services (ADS). Here we describe the protocol for an embedded pragmatic trial designed to augment standard ADS known as ADS Plus. ADS Plus provides family caregivers with support via education, referrals, and problem solving techniques over 12 months, and is delivered on-site by existing ADS staff. Embedding a program in ADS requires an understanding of outcomes and implementation processes in that specific context. Thus, we deploy a hybrid design involving a cluster randomized two-group trial to evaluate treatment effects on caregiver wellbeing, ADS utilization, as well as nursing home placement. We describe implementation practices in 30 geographically and racially/ethnically diverse participating sites. Clinical trial registration #: NCT02927821.
This study uses data from the 2015 National Health and Aging Trends Survey to investigate whether family and unpaid caregiver characteristics are associated with the receipt of caregiver training.
Unpaid carers are the backbone of our society who often go unrecognised for their dedication and compassion. They face a range of challenges as they attempt to juggle their work-life-care responsibilities. That’s why we decided to commission YouGov to conduct a UK-wide research project focused on identifying gaps in support and sought to understand the views of unpaid carers.
The impacts of loneliness, poor mental and physical health, financial worries and a lack of flexibility to learn or train are placing unpaid carers under increasing strain.
When carers were asked about their support needs, a sizable majority (74%) of carers felt that further support in some form would be useful to them, with a common desire for emotional support (33%). Carers also sought information and advice about the support available, respite care, and finances. Our report also found that there was a need for advice about maintaining good mental and emotional health, shining a light on the often unexpected levels of stress, isolation and despondency felt by unpaid carers.
People who have had a stroke face high risks of cognitive impairment, anxiety, and depression. Health education for family members contributes to better outcomes in various diseases, but the effects of health education on family members of people who have had a stroke are unclear. The aim of the present study was to evaluate the effects of the family member education program (FMEP) on cognitive impairment, anxiety, and depression in persons who have had a stroke. In total, 144 persons who experienced a stroke were randomly allocated to the FMEP group or control group (1:1 ratio). In the FMEP group, the FMEP and conventional treatment were provided, while in control group only conventional treatment was provided. The increase in the Montreal Cognitive Assessment (MOCA) score from baseline to 12 months (M12 – baseline) in the FMEP group was higher compared with the control group, and the FMEP led to a decreased cognitive impairment rate (MOCA score ≤26) after 12 months compared to the control group. Changes in the Hospital Anxiety and Depression Scale anxiety and depression score (M12 – baseline) decreased in the FMEP group compared with the control group. Fewer participants with depression and a lower depression grade were observed in the FMEP group compared with the control group. The FMEP could reduce cognitive impairment, anxiety, and depression in persons who have had a stroke.
Background: The family caregivers of patients undergoing hemodialysis are faced with multiple physical, psychological, social, economic, and spiritual problems that increase their care burden. The present study was conducted to determine the effects of a family-based training program on the care burden of family caregivers of patients undergoing hemodialysis.; Materials and Methods: The present controlled, randomized, clinical trial was conducted on 70 caregivers of patients undergoing hemodialysis in Ali Asghar and Zahray-e Marzieh hospitals in Isfahan, Iran, in 2017. After conducting convenient sampling, 70 participants were randomly assigned into 2 groups (35 in each group). The experimental group received the family-based training program and the control group received usual care plan. Data were collected using the Zarit Burden Scale before, immediately after, and 1 month after the intervention and were then analyzed by independent t-test, Chi-square, and Analysis of Covariance (ANCOVA) repeated measure.; Results: The results showed that both groups were homogeneous in terms of their demographic data and showed no significant differences. The main effect of group was significant, indicating a significant decrease in care burden in the experimental group after the intervention (F1,67 = 1089, p < 0.001). However, the interaction of time and group was not significant, indicating insignificant difference in burden 1 month after intervention (p > 0.05).; Conclusions: Since the family-based training program successfully reduced the burden of care immediately after intervention, similar family-based training programs are recommended to be designed and developed. However, insignificant time effect suggests further researches of long time effects of such program.
The aim of this study was to test the hypothesis that a negative reaction to the illness would be reduced through the "Collaborative Care Skills Workshops" programme among Spanish caregivers of relatives with an eating disorder. Caregivers were randomly allocated to either the skill‐based workshops (n = 32) or psycho‐educational workshops (n = 31), and assessments were carried out over time (T0 vs. T1 vs. T2). There were no significant differences between interventions on primary or secondary caregiver outcomes or among the patients themselves. However, caregivers in both interventions showed greater improvement at T2 on accommodating and enabling behaviours and an improvement at T1 in terms of psychological distress and appraisals towards the caregiving experience. Eating pathology, psychological distress, and some indices of psychosocial adjustment were significantly lower among the patients following both interventions (T1). Overall, both interventions may be able to help caregivers and patients to decrease their psychological distress. Highlights: Involvement of family members in the treatment could be the best resource for aiding in their relative's recovery.This is the first controlled study to test the effectiveness of the Collaborative Care Skills Workshops in Spanish caregivers.Both interventions could be implemented as both help Spanish caregivers and patients.
This review systematically reviewed the therapeutic effects for people with LTCs and their family caregivers learning MBIs [Mindfulness-based interventions] together in a partnership. The review asked what changes in psychological wellbeing or interpersonal factors do people with LTC and their family caregivers experience when learning MBI together in a partnership.
Background: Cancer survivors and their informal caregivers (family members, close friends) often experience significant impairments in health-related quality of life (HRQOL), including disruptions in psychological, physical, social, and spiritual well-being both during and after primary cancer treatment. The purpose of this in-progress pilot trial is to determine acceptability and preliminary efficacy (as reflected by effect sizes) of CBCT® (Cognitively-Based Compassion Training) compared with a cancer health education (CHE) attention control to improve the primary outcome of depressive symptoms and secondary outcomes of other HRQOL domains (e.g., anxiety, fatigue), biomarkers of inflammation and diurnal cortisol rhythm, and healthcare utilization-related outcomes in both cancer survivors and informal caregivers. Methods: Forty dyads consisting of solid tumor survivors who have completed primary treatments (chemotherapy, radiation, surgery) and their informal caregivers, with at least one dyad member with ≥ mild depressive symptoms or anxiety, will be recruited from Tucson, Arizona, USA. Survivor-caregiver dyads will be randomized together to complete either CBCT or CHE. CBCT is a manualized, 8-week, group meditation-based intervention that starts with attention and mindfulness and builds to contemplative practices aimed at cultivating compassion to the self and others. The goal of CBCT is to challenge unexamined assumptions about feelings and behaviors, with a focus on generating spontaneous self-compassion and increased empathic responsiveness and compassion for others. CHE is an 8-week, manualized group intervention that provides cancer-specific education on various topics (e.g., cancer advocacy, survivorship wellness). Patient-reported HRQOL outcomes will be assessed before, immediately after (week 9), and 1 month after CBCT or CHE (week 13). At the same time points, stress-related biomarkers of inflammation (e.g., plasma interleukin-6) and saliva cortisol relevant for survivor and informal caregiver wellness and healthcare utilization will be measured. Discussion: If CBCT shows acceptability, a larger trial will be warranted and appropriately powered to formally test the efficacy of this dyadic intervention. Interventions such as CBCT directed toward both survivors and caregivers may eventually fill a gap in supportive oncology care programs to improve HRQOL and healthcare utilization in both dyad members. Trial Registration: Clinicaltrials.gov, NCT03459781 . Prospectively registered on 9 March 2018.
Objective Investigate effectiveness of a 5-session manualized intervention for addressing needs of caregivers of persons in acute traumatic brain injury (TBI) rehabilitation. Design Prospective, pilot randomized controlled trial. Setting Inpatient brain injury rehabilitation unit, level 1 trauma center. Participants Patients (N=93) with moderate-to-severe TBI and their family members were enrolled in the study with 42 randomized to the treatment group, 51 to the control group. Intervention Five-session manualized caregiver intervention with educational, stress and anxiety self-management, coping, and emotional support components. Main Outcome Measures Family Needs Questionnaire-Revised, knowledge assessment, Zarit Family Burden Scale, and Brief Symptom Inventory-18 were collected at pretreatment, posttreatment, and 3-month follow-up. Results Treatment group caregivers showed an increase in met needs for emotional, instrumental, and professional support, and brain injury knowledge from baseline to posttreatment, whereas controls did not. Between-group differences were significant for only emotional support needs. Treatment effects were not sustained at 3-month follow-up. Conclusions Caregivers of persons undergoing acute TBI rehabilitation may benefit from interventions that target their unique needs. Caregivers may require additional and longer-term supports to sustain treatment benefits.
Background and Aim: The European Association of Palliative Care recommends that family carers need education on the progression of dementia. This systematic review aimed to explore whether interventions incorporating education regarding the progressive nature of dementia increased carers' understanding of dementia and improved mental health and burden.; Method: MEDLINE, PsycINFO and CINAHL were searched to April 2018. Randomised controlled trials with samples of family carers of someone with dementia were eligible. Included interventions involved a component aimed to increase the carer's understanding of the progression of dementia. Outcomes of interest included: knowledge of dementia, depression, burden and pre-death grief.; Results: Searches identified 3221 unique citations of which 11 studies were eligible for review. Interventions ranged from 4 to 16 sessions of which 1 to 3 sessions focused on the progression of dementia. Knowledge: Two studies evaluated carers' knowledge of dementia. One found no difference between the trial arms immediately after the intervention or three months later. The second found a significant intervention effect at the end of the intervention but not at three-month follow-up. Depression: Seven studies evaluated intervention effects on depression. Meta-analysis of three trials showed significant differences in mean follow-up scores favouring intervention over control. The remaining four studies did not show differences in depression between intervention and control groups. Burden: Nine studies evaluated burden and were examined in two meta-analyses (mean scores at follow-up and mean change scores from baseline to follow-up), neither of which found a benefit for intervention over control. Using the grading of recommendations assessment, development and evaluation system, we judged the quality of evidence to be very low for depression and low for burden, knowledge and pre-death grief, reducing our confidence in any of the effect estimates.; Conclusion: The evidence was not sufficient to support or refute the effectiveness of education on progression of dementia on carers' knowledge and mental health.
Background: Family caregivers of operated neurosurgery patients function as informal extensions of the health system. But they are untrained and unprepared for their new role. It has been felt that their problems related to care provision can be resolved by appropriate training.; Aim: This study aimed to compare the impact of self-instruction manual-based training of family caregivers of operated neurosurgery patients on their knowledge regarding care provision and care practices.; Setting: Tertiary care hospital setting located in North India.; Design: Randomized controlled trial.; Materials and Methods: A randomized controlled trial was done among the operated neurosurgery patients and their caregiver dyads (n = 90). They were randomly allocated to receive either self-instruction manual and one-to-one training (TP1) or self-instruction manual only (TP2). Block randomization method was used. Sequentially numbered sealed envelope was used for allocation concealment. Monthly follow-up was done for 3 months. The primary outcome measure was knowledge gain of the caregivers.; Statistical Analysis Used: Chi-square test, Student's t-test, paired t-test, repeated measures analysis of variance, and Bonferroni's correction were used.; Results: The attrition rate was 15.5%. Intention-to-treat analysis was followed. Caregivers in the TP1 group had significant knowledge gain (95% confidence interval of mean difference 9.4-14.5, P < 0.05). The number of caregivers who had followed correct caregiving practices was significantly more in the TP1 group.; Conclusion: Training of caregivers by providing information along with one-to-one training is an effective strategy for improving the knowledge and skills of caregivers regarding care provision of the operated neurosurgery patients.
Background: Care for stroke patients at home is a very complicated and tough activity.; Objective: The study was conducted to examine the effect of patient care education on burden of care and quality of life of caregivers of stroke patients.; Materials and methods: The study was an educational trial conducted on 100 caregivers of the stroke patients in Al-Zahra educational hospital, Isfahan, Iran. The intervention group received some training to empower caregivers in family-oriented care in form of an educational counseling program. Data were collected and analyzed using the questionnaires, including demographic, quality of life Short Form-36, and Zarit burden of care questionnaires.; Results: The mean ages of caregivers were 48.52 years in the intervention and 45.14 years in the control groups. The results indicated significant differences in mean of quality of life and burden of care in the caregivers of the intervention group after intervention (P<0.01), which was insignificant in the control group. The average burden on the caregivers of both groups was significantly associated with health status, economic status, marital status, the number of children, care hours, care days, and familial relationship of the caregivers with the patients (P<0.01) before intervention. In addition, quality of life of both groups was significantly related to their health status (P<0.01) before intervention.; Conclusion: Patient care education reduced the burden of care and improved quality of life of the caregivers of stroke patients. Thus, to reduce the complications of caring for stroke patients, family education should be the priority of nursing and discharging procedures.
Objectives: To explore the feasibility and efficacy of web-based mindfulness training for carers of people with spinal cord injury (SCI).; Design: Randomized controlled feasibility study with 3-month follow-up.; Setting: Community setting.; Participants: Spouses or family caregivers (N=55) of people with SCI and chronic neuropathic pain were recruited via the direct care team and advertisements. Participants were older than 18 years (no upper age limit), with Internet access for the duration of the study. Participants were randomly allocated to an 8-week online mindfulness training intervention (n=28), or to receive 8 weeks of psychoeducational materials on SCI and chronic pain (n=27).; Interventions: An established web-based, mindfulness training course was delivered over 8 weeks. Participants completed 10 minutes of mindfulness practices, twice per day, 6 days per week, totaling 960 minutes. The control group received a weekly e-mail with psychoeducational materials (based on the established elements) on SCI and pain for 8 weeks.; Main Outcome Measure: Depression severity.; Results: Mindfulness reduced depression severity more than psychoeducation at T2 (mean difference= -.891; 95% confidence interval,-1.48 to -.30) and T3 (mean difference=-1.96; 95% confidence interval, -2.94 to -.97). Mindfulness training also reduced anxiety at T2 (mean difference=-.888; 95% confidence interval, -1.40 to -.38) and T3 (mean difference=-2.44; 95% confidence interval, -3.20 to -1.69).; Conclusions: Results indicate that Internet-delivered mindfulness training offers unique benefits and is viable for caregivers of people with SCI and chronic neuropathic pain. Further work should explore the feasibility of combined education and mindfulness training incorporating both patient and caregiver, for optimum benefit.
Background: Self-care systems for early-stage specialist palliative care for cancer patients and their family caregivers have received much attention recently. Resonant breathing is an established method for maximizing heart rate variability (HRV), but it has not been implemented for home self-care. Objective: We aimed to examine the usefulness and ease of implementation for family caregivers to administer resonant breathing using a portable device at home. Design: We divided caregivers into two groups—a home self-care group and a control group—and we conducted a randomized open-label study, with rate of change in HRV being the primary outcome. Setting/Subjects: We administered HRV biofeedback (HRV-BF) using resonant breathing to 54 family caregivers who felt burdened by their nursing care responsibilities. Results: Among the self-care group, 92.6% of participants completed the study in their homes; 28 days after intervention initiation, the resonant breathing implementation rate at home was 86.1%. There was an interaction between time course and grouping in our HRV comparisons: the change rate in the home self-care group was higher during HRV-BF than before HRV-BF. Conclusions: Because family caregivers in our study learned to quickly administer resonant breathing using a portable device at home, resonant breathing improved rapidly, along with autonomic nerve function and quality of life.
Carers of persons with borderline personality disorder (BPD) experience high burden. Treatment guidelines advocate involving carers in comprehensive therapy approaches. This study is a randomized controlled trial of group psychoeducation, compared to waitlist. Group psychoeducation involved 6–8 carers per group and focused on improving relationship patterns between carers and relatives with BPD, psychoeducation about the disorder, peer support and self-care, and skills to reduce burden. Carers were randomized into intervention (N = 33) or waitlist (N = 35). After 10 weeks, those in the intervention reported improvements in dyadic adjustment with their relative, greater family empowerment, and reduced expressed emotion, sustained after 12 months. There were also improvements in carers' perceptions of being able to play a more active role, such as interacting with service providers. This study demonstrates that providing structured group programs for carers can be an effective way of extending interventions to a group experiencing high burden.
Background: Despite the role caregivers play in the delivery of care, the interactions and training methods used with caregivers during an inpatient stay are not clear.; Purpose: The purpose was to examine interactions and training methods used with caregivers during hospital care.; Methods: A mixed-methods case study was conducted. Observations were summarized and interviews were analyzed using thematic analysis.; Results: The frequency of caregiver engagement varied at different points in the care process but was highest among observations during the stay care point. Providers were most commonly using written and verbal instructions to train caregivers. Three themes emerged from the interviews and were described to be both facilitators and barriers to caregiver involvement: experience, time, and relationship.; Conclusions: High-quality person and family-centered care depends upon coordinated efforts among health care systems, providers, patients, and caregivers. Future caregiver initiatives should aim to decrease disengagement, increase assessment, and broaden the use of training methods.
Objectives: Family caregivers of hospice patients have multiple needs as they try to cope during a stressful time. Translatable interventions effective in improving caregiver outcomes are greatly needed. Our objective was to assess the impact of a problem-solving intervention (called Problem-Solving Intervention to Support Caregivers in End-of-Life Care Settings [PISCES]) to support hospice caregivers on caregiver quality of life and anxiety, and compare its effectiveness delivered face to face and via videoconferencing.; Design: In this 4-year randomized clinical trial, caregivers were randomly assigned to a group receiving standard care with added "friendly calls" (attention control [AC] group), a group receiving standard care and PISCES delivered face to face (F2F), or a group receiving standard care and PISCES delivered via videoconferencing (VC).; Setting: Home hospice.; Participants: A total of 514 caregivers participated (172 in AC, 171 in F2F, and 171 in VC). Caregivers were predominantly female (75%); mean age was 60.3 years.; Intervention: PISCES includes a structured curriculum delivered in three sessions and motivates caregivers to adopt a positive attitude, define problems by obtaining facts, set goals, and generate and evaluate solutions.; Measurements: Quality of life was measured by the Caregiver Quality of Life Index-Revised; anxiety was measured by the Generalized Anxiety Disorder 7-Item. Other measures included the Caregiver Reaction Assessment scale, demographic data, and an exit interview.; Results: Compared with AC, caregivers in the F2F condition had postintervention reduced anxiety (-1.31 [95% confidence interval [CI] = -2.11 to .50]; p = .004) and improved social (.57 [95% CI = .19-.95]; p = .01), financial (.57 [95% CI = .21-.93]; p = .004), and physical quality of life (.53 [95% CI = .19-.87]; p = .01). There were no differences in caregivers in the VC condition compared with the AC condition.; Conclusion: The PISCES intervention improves caregiver outcomes and is effective when delivered in person. How to integrate technology to reduce the intervention delivery cost warrants further investigation.
Background: Previous studies on the effectiveness of psychological interventions in oncology mainly used quantitative measures and no study was conducted with regard to both caregivers and patients. Aim: This study evaluates the effectiveness of psychoeducational support groups, both for women with breast cancer, and for their informal caregivers through the use of quantitative and qualitative measures. Methods: A longitudinal design was used comparing two psychoeducational support groups with other two groups in a standard care control condition. Participants were 28 women with a diagnosis of breast cancer in the care of a hospital in Northern Italy, and 21 family caregivers. The quantitative data were collected by Cognitive Behavioral Assessment for Outcome Evaluation (CBA-OE) and the qualitative data through the use of semi-structured interviews. Results: The statistical analysis showed a significant change attributable to the psychological intervention that proves the effectiveness of such an intervention in the patients' and caregivers' group. The qualitative analysis allowed us to interpret the behavioral and psychological profile emerging from CBA-OE, by considering the subjective experience of the treatment groups. The group experience offered affective, relational and informative support, and allowed participants to create a network and to feel understood and reassured. Conclusion: The results suggest the usefulness of psychoeducational support groups for women with breast cancer and for their caregivers. The value of this kind of intervention is not only at an individual level but also at a systems level, and family involvement ensures the best positive outcomes.
Background: The steady increase in the number of people suffering from chronic diseases and increasing life expectancy raises new demands on health care. At the same time, the need for informal caregivers is increasing. This study aims to perform a systematic review of the methodologies used to identify effect of different types of training on informal caregivers and their older persons.; Methods: MEDLINE (PubMed), CINAHL and Ovid were searched from December 2016 and April 2017. The following keywords were used; "informal caregiver", "training" "elderly", older persons". Identified publications were screened by using the following inclusion criteria; systematic reviews, randomized controlled trials, prospective cohort and multicentre studies, English language full text journals, samples or interventions that included caregivers of older persons and published in last 10 years.; Results: Twenty four studies (12 randomised control trials, 8 intervention studies and 4 systematic reviews) were included. Most of the randomized controlled trials involved both caregivers and elderly. Pretests and post-tests were used in intervention studies (5 out of the 8 studies). ICT-based, psychosocial interventions on family caregivers' education program for caregivers were applied. Caregivers following a supportive educative learning had a significantly better quality of life.; Conclusions: The findings of this systematic review suggest that support interventions for caregivers can be effective in reducing caregivers' stress, with a consequent improvement of the quality of care. However, results are based on relatively small studies, reporting somewhat controversial findings supporting the need to perform further research in this field.
Background: Training family carers to provide evidence-based rehabilitation to stroke patients could address the recognized deficiency of access to stroke rehabilitation in low-resource settings. However, our randomized controlled trial in India (ATTEND) found that this model of care was not superior to usual care alone. Aims: This process evaluation aimed to better understand trial outcomes through assessing trial implementation and exploring patients’, carers’, and providers’ perspectives. Methods: Our mixed methods study included process, healthcare use data and patient demographics from all sites; observations and semi-structured interviews with participants (22 patients, 22 carers, and 28 health providers) from six sampled sites. Results: Intervention fidelity and adherence to the trial protocol was high across the 14 sites; however, early supported discharge (an intervention component) was not implemented. Within both randomized groups, some form of rehabilitation was widely accessed. ATTEND stroke coordinators provided counseling and perceived that sustaining patients’ motivation to continue with rehabilitation in the face of significant emotional and financial stress as a key challenge. The intervention was perceived as an acceptable community-based package with education as an important component in raising the poor awareness of stroke. Many participants viewed family-led rehabilitation as a necessary model of care for poor and rural populations who could not access rehabilitation. Conclusion: Difficulty in sustaining patient and carer motivation for rehabilitation without ongoing support, and greater than anticipated access to routine rehabilitation may explain the lack of benefit in the trial. Nonetheless, family-led rehabilitation was seen as a concept worthy of further development.
Currently there is a lack of understanding of dementia by the general public in Taiwan, and more importantly, those who care for dementia suffers. The aim of the current Educational Programme (EP) was to help the participants increase their knowledge of dementia, and thus to strengthen their caring skills for dealing with the Older Adults with Dementia (OAwD). The programme involved 282 participants and took 15 months to complete. All those participated were non-professional, private carers who looked after their family members that suffer from dementia. It was demonstrated that such a programme was greatly beneficial to participants in gaining knowledge about dementia, learning more caring skills, and other valuable information included in the educational programme curriculum. It was evident that after completion of the programme, the participants became more aware of the available community resources and more likely to access those additional support. All participants showed strong interest in repeating the educational programme to further enhance their caring skills.
With the recent movement toward a personal-recovery paradigm to treat schizophrenia, the locus of mental health care delivery has shifted toward community-based care. Family caregivers comprise a substantial component of that community, and are often providing care for longer periods, but often have no formal training or support. Caregiver-directed psychosocial interventions (CDPI) have been developed to train and assist caregivers in their efforts to maximize the odds of treatment success for those in their care. This meta-analysis compared CDPI versus treatment as usual (TAU) on outcomes such as hospitalization, relapse, non-compliance, and “other outcomes” (emergency services utilization, suicide attempt, and death). A systematic literature search (2005–2015) was conducted to identify randomized controlled trials of outpatient administered CDPI versus TAU to treat adult patients recovering from schizophrenia. Relative risks (RR) with 95% confidence intervals derived via random effects meta-analysis were calculated to compare CDPI versus TAU on the aforementioned outcomes. Eighteen of the 693 citations were retained for analysis. Overall RR for CDPI versus TAU suggested improved outcomes associated with CDPI: hospitalization [0.62 (0.46, 0.84) p < 0.00001], relapse [0.58 (0.47, 0.73) p < 0.00001] and other outcomes [0.70 (0.19, 2.57) p = 0.59]. CDPI was associated with significantly better compliance with medication and clinical activities combined [0.38 (0.19, 0.74) p = 0.005]. Medication compliance alone favored CDPI but was non-significant. Compliance with clinical activities alone favored CDPI significantly [0.22 (0.11, 0.47) p < 0.00001]. CDPI is associated with reductions in hospitalization, relapse, and treatment non-compliance.
The article reports on the number of grants given by the Education Foundation of the Paralyzed Veterans of America (PVA) that will deliver knowledge through person-to-person interactions at conferences and symposia. It outlines the six categories in which education grants can be awarded. It notes that the next Education Foundation grant cycle will be open on September 1, 2018.
With the growing older adult population, there will also be more informal caregivers assisting friends and family with their health care. With the increasing complexity of health care, improved caregiver communication skills have the potential to reduce caregiver burden and frustration and improve care recipient health. The primary goal of this project was to develop and refine the content and teaching methods of a small-group behavioral change program to improve communication between caregivers of older adults and health care professionals. The authors developed the Care Talks program for improving communication between caregivers and health care professionals. They conducted a prospective cohort feasibility study of the intervention to assess caregiver communication confidence at baseline and one month postintervention. Six participants were enrolled. Of the 15 participants who answered the question, 15 (100%) would recommend this program to a friend. There was significant improvement in a 10-question composite of communication confidence pre/post scores from 74.1 to 79.6 p = .03. This small-group behavioral change intervention significantly improved communication confidence for this sample of caregivers. Further research is needed to determine the long-term effects of this program on caregivers and care recipients.
Aims: At first-episode psychosis (FEP), many patients will be routed within familial networks and supported by informal carers who are predominately close family members such as parents. Carer burden, distress and poorer coping styles are associated with different illness beliefs. The current study sought to examine the impact and acceptability of a 3 session, cognitively informed, group intervention targeting illness beliefs previously linked to distress and poorer caregiving experiences in FEP carers.; Methods: Carers attending a routine FEP service were invited to attend the group intervention and completed a measure of illness beliefs at baseline and post intervention.; Results: Data on 68 carers with complete datasets are presented. Carers were predominately females (64.2%). Group attendance was linked to positive improvements in carer baseline beliefs about the negative consequences of the illness for the patient and themselves, attributions of blame about the illness to the patient and themselves and their overall understanding about the illness. Significant improvements in their understanding of the illness timeline and course, and confidence in dealing with difficulties were also identified.; Conclusions: A cognitively informed group approach to targeting the less adaptive illness beliefs reported by FEP carers may offer an effective and acceptable pathway to facilitate their understanding of the illness and adjustment. Further studies using controlled designs are required.
Background: Resources for Enhancing All Caregivers Health in the Department of Veterans Affairs (REACH VA) is an evidence-based intervention supporting family dementia caregivers that has been shown to improve caregiver outcomes for culturally diverse populations in the United States. However, this model has not been tested in low- and middle-income countries (LMICs) including Vietnam, where community-based psychosocial interventions are urgently needed. The objectives of this study are to assess the feasibility and preliminary effectiveness of a culturally adapted version of the Resources for Enhancing All Caregivers Health in Vietnam (REACH VN).; Methods: A cluster randomized controlled trial (RCT) will be conducted over a 6-month period in Soc Son district located in Hanoi. An expected sample of 10 to 12 communes, representing approximately 50 dementia primary caregivers, will be randomized to either the REACH VN intervention or an enhanced control condition. Inclusion criteria for the caregiver include age ≥18, family member who provides the most day-to-day care for person with dementia, and a total score for the brief (4 item) Zarit Burden Scale of ≥6. Over the course of 2 to 3 months, each participant in the intervention group will receive the REACH VN intervention comprised of 4 core sessions on problem solving, mood management/cognitive restructuring, stress management, and communication, and up to 2 additional sessions based on caregiver's needs. The enhanced control group will receive a single session that provides verbal and written information on dementia. Caregiver outcomes will be assessed at baseline (i.e., time of enrolment) and 3 months. The feasibility will be assessed with regard to recruitment, retention, treatment adherence, treatment fidelity, and assessment processes. For preliminary effectiveness, we will examine caregiver burden as the primary outcome and changes in caregiver depressive symptoms and in Alzheimer disease knowledge as secondary outcomes.; Discussion: This is the first study to test community-based family dementia caregiver intervention in Vietnam. Results from this study will provide the foundation for a larger effectiveness trial and broader dissemination in Vietnam and may help inform efforts to develop similar community-based family dementia caregiver support programs in other LMICs.; Trial Registration: ClinicalTrials.gov, ID: NCT03587974.
Background: Caregivers are often unprepared and overwhelmed with the responsibilities of providing care to stroke survivors, which can lead to negative physical and psychological effects.; Purpose: To evaluate the impact of the Family Informal Caregiver Stroke Self-Management (FICSS) program on burden and life changes resulting from providing care among family caregivers of stroke survivors.; Methods: A prospective pre-test and post-test design using quantitative and qualitative data was used to evaluate the program with a convenience sample of 42 caregivers. The four-module facilitated program consisted of small group-guided discussion. Quantitative evaluations were completed at baseline, 2 weeks and 6 months (post-intervention), and qualitative data were collected at 2 weeks and 6 months. Life changes and burden were measured using the Bakas Caregiving Outcome Scale (BCOS) and the Oberst Caregiving Burden Scale (OCBS), respectively.; Results: The BCOS scores increased consistently over time, showing significant differences at 6 months compared with 2 weeks (mean difference: 5.29, 95% confidence interval [CI]: 0.30-10.28, p=0.04) and baseline (mean difference: 7.58, 95% CI: 2.92-12.23, p=0.001). The OCBS time scores decreased consistently over time, showing a significant difference at 6 months compared with baseline (mean difference: -5.20, 95% CI: -0.96 to -9.44, p=0.02). The OCBS difficulty scores fluctuated over time, resulting in no overall difference from baseline to 6 months. Qualitative themes were consistent with the positive quantitative findings.; Conclusion: Study results suggest that the FICSS program may result in reduced caregiver burden and improved life changes resulting from providing care.
Objectives: This study evaluated the change in the concerns, wellbeing, and lifestyle behaviors of informal caregivers of people with cancer attending Penny Brohn UK's Living Well Course (LWC), a self-management education intervention. Design: A pre–postcourse design collected self-reported quantitative and qualitative data from informal caregivers attending a LWC. Setting/Location: Penny Brohn UK is a United Kingdom-based charity (not-for-profit) providing specialist integrative, whole person support, free of charge, to people affected by cancer. Subjects: Informal caregivers taking part in a Penny Brohn UK LWC between June 2014 and May 2016 attending alongside the person with cancer. Intervention: The LWC is a structured 15 h, multimodal group self-management educational course, designed to help people affected by cancer learn tools and techniques to help build resilience. Trained facilitators deliver LWCs to around 12 people with various types and stages of cancer and their informal caregivers. Outcome measures: Measure Yourself Concern and Wellbeing (MYCaW) completed precourse and at 6 weeks postcourse; and bespoke 6-week follow-up Patient Reported Experience Measure. Results: Four hundred eighty informal caregivers attended a LWC June 2014 to May 2016. One hundred eighteen completed a 6-week follow-up MYCaW: MYCaW Concerns 1 and 2 showed statistically significant improvements (p < 0.0001), there was no significant improvement in wellbeing. Informal caregivers' most reported concerns relating to themselves were psychological and emotional issues (59%). The primary concern of the caregiver for the care recipient was related to the physical health of the person with cancer (40%). Eighty-seven percent of responding informal caregivers stated that the LWC enabled health self-management. Conclusions: The LWC was followed by an improvement in informal caregivers' concerns, and increased self-management of their own health needs. More studies, with larger sample size, are needed to explore if better self-management by informal caregivers may also lead to improvements in patients' health and wellbeing.
Background and Objective: Psycho-education is an intervention integrating psychotherapeutic and educational strategies. Whilst carer psycho-education is known to aid in psychiatric disorders, at present there is no known tool to assess the degree to which this is routinely provided by mental health professionals. Our objective was to develop and validate a tool, in English, which assesses psycho-education of carers of psychiatric patients in Pakistan. Methods: A questionnaire was generated in English. It was pretested on twenty male and female carers and was refined to attain a more reliable version. Sixty bilingual male and female primary carers, who were fluent in English, and had been in a care-giving role for more than three months were requested to complete the developed Questionnaire for the Assessment of Psycho-Education of Carers (APEC) at Fatima Memorial Hospital Psychiatry Out-patient department within a period of four months from December, 2017 to April, 2018. Carers were identified via patients presenting to a psychiatric OPD. Responses were analyzed for reliability and test retest consistency using Cronbach's alpha analysis, Intraclass correlation coefficients, factor analysis and Paired t-test. Results: APEC was found to be easily understandable and capable of adequately assessing aspects of psycho-education. A high degree of internal consistency was demonstrated on cronbach's alpha analysis. Cronbach's α coefficient for various domains was sufficiently high ranging from 0.76 to 0.960. Similarly, domains of (APEC) were highly correlated. Test-retest reliability was assessed by computing the correlation between Visits 1 and 2 scores. Conclusion: The developed questionnaire can adequately assess psycho-education of primary carers in mental health settings.
Chronic diseases are mostly managed by family caregivers that often face the "caregiver burden". This study aimed to understand whether a multidisciplinary theoretical-practical training course could influence the burden, health literacy and needs of caregivers. Seventy-six familial caregivers were asked to complete the Caregiver Burden Inventory-CBI, Caregiver Needs Assessment-CNA, and Health Literacy Questionnaire-HLQ, before and after the course. A significant decrease in CBI and an increase of CNA were observed. However, a significantly higher rate of CBI decrease and a lower increase of CNA were detected in the neurological compared to the oncological group (p = 0.001). Moreover, the ability of the participants to look for and find health information significantly improved. The course contrasted caregivers' burden, increased their search for health information, and revealed their requiring of training and emotional and social support. Caregiver education plays a pivotal role in the management of chronic patients, enhancing the quality of life of both patients and caregivers. Highlights • Caregivers' ability to care for chronic patients can affect patients' outcomes. • Caregivers' needs assessment and education are often neglected in healthcare. • A training course positively influenced caregivers' burden, health literacy and needs. • Caregivers' education is fundamental for the management of chronic patients.
Background: The consequences and high costs of psychiatric disorders impact family caregivers greatly. Health services should identify and provide accessible support programs to facilitate effective caregiver coping.; Purpose: The aim of this study was to determine the effectiveness of a theory-of-planned-behavior-based problem-solving training program on the coping styles of family caregivers of psychiatric inpatients.; Methods: In this two-group, randomized control trial, 72 family caregivers were randomly assigned to either a control group receiving standard care or an intervention group receiving a training program (eight sessions over 4 weeks). Demographic information was recorded at baseline, and the Coping Inventory for Stressful Situations was administered to both groups at baseline, immediately postintervention, and 1-month follow-up.; Results: Immediately after the intervention, the intervention group earned significantly higher task-oriented coping style scores (mean difference = 5.03, p = .015) than the control group, but no significant difference was detected between the two groups for either emotion- or avoidance-oriented coping style scores. At 1-month follow-up, the intervention group earned significantly higher scores than the control group for task-oriented (mean difference = 8.56, p < .001) and emotion-oriented (mean difference = 7.14, p = .002) coping styles. No improvement in avoidance-oriented coping style at the postintervention or follow-up time points was detected.; Conclusions: Implementation by nurses and other health professionals of problem-solving training programs that are based on the theory of planned behavior is recommended to strengthen the use of task- and emotion-oriented approaches that help family caregivers of psychiatric patients better cope with stress.
Background Family carers of people living and dying with dementia experience grief. The prevalence, predictors and associated factors of grief in this population have been identified, and psychosocial interventions to decrease grief symptoms have been implemented. However, the effect of psychosocial interventions on family carers’ grief, loss or bereavement has not been examined. Objective To synthesize the existing evidence regarding the impact of psychosocial interventions to assist adjustment to grief, pre- and post-bereavement, for family carers of people with dementia. Inclusion criteria Types of participants Family carers of older persons with dementia (>65 years). Types of interventions Psychosocial interventions in health and social care facilities, and community settings designed to assist family carers adjust to grief during the dementia trajectory and/or following death. Comparisons No treatment, standard care or treatment as usual, or an alternative intervention. Types of studies Experimental and epidemiological study designs. Outcomes Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated instruments. Search strategy A three-step strategy sought to identify both published and unpublished studies from 1995. Methodological quality Assessed by two independent reviewers using standardized critical appraisal tools from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). Data extraction The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently. Data synthesis Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome measures. Results Data were extracted from three studies. Study designs were a randomized controlled trial; a pre-test, multiple posttest quasi-experimental; and a single group, repeated measures. The interventions were multi-component, had durations of nine to 26 weeks and were delivered while care recipients were alive. All studies were undertaken in the United States. There were 327 family carers, of which 197 received a psychosocial intervention. Family carers were predominantly female (84.7%), Caucasian (73.4%) and caring for their spouse (44.3%). All care recipients had dementia; 68.5% had Alzheimer’s disease. Two studies measured anticipatory grief, and the third study reported normal and complicated grief. Moderate benefits to anticipatory grief were evident upon completion of the “Easing the Way” intervention (effect size -0.43, P = 0.03). After controlling for research design and control variables, for every hour increase in the interventions focusing on family carers’ cognitive skills, there were associated decreases in carers’ normal grief (parameter estimate [PE]= -0.81, P = 0.02) and complicated grief (PE=-0.87, P = 0.03). For every hour increase in the interventions focusing on carer behavior, there was an associated decrease in carers’ complicated grief (PE = -1.32, P = 0.04). For every hour increase in the interventions focusing on care recipient behavior, there was an associated decrease in carers’ complicated grief (PE = -2.91, P = 0.04). Conclusion There is little evidence upon which to base practice with regard to interventions to reduce any aspects of grief. Findings suggest that different pre-death interventions might be warranted depending upon a family carer’s unique clinical presentation and combination of risk factors. Cognitive skills training provided while the care recipient is alive may positively impact normal and complicated grief following the death of the care recipient. When the cognitive skills training is provided in conjunction with behaviorally oriented interventions that improve the wellbeing of the carer and care recipient, carers’ complicated grief symptoms may be reduced.
Background Intensive care nurses may have an important role in empowering families by providing psychological support and fulfilling the family's pivotal need for information. Aim To determine whether ‘education of families by tab’ about the patient’s condition was more associated with improved anxiety, stress, and depression levels than the ‘education of families by routine’. Research design A randomized control trial of 74 main family caregivers (intervention: 39; control: 35). Setting An adult intensive care unit. Main outcome measures Depression Anxiety Stress Scale, and Communication and Physical Comfort Scale. Results Although information need satisfaction was not significantly different between intervention and control groups, the former reported significantly better depression score on Depression Anxiety Stress Scale comparing to the control group (p<0.01;η2=0.09) with a medium effect size. Reduction of anxiety in the intervention group were clinically significant. Conclusion The results suggest that use of ‘education of family by tab’ is promising for intensive care nurses to provide psychological support for family members. More studies are needed to investigate this aspect of family care for better psychological support and information need satisfaction that contributes to the evidence-based practice of intensive care nursing.
The purpose of this study was to evaluate the effectiveness of the post-stroke care program within the community setting in Thailand. Methods This quasi-experimental study was a nonequivalent control group pre-test and post-test design. A total of 62 pairs of post-stroke patients and their family caregivers were recruited to the study (31 pairs per group). The intervention consisted of a four-week program that included distributing pertinent information, providing skill practice during post-stroke care sessions and utilizing strategies to enhance motivation and behavioral skills of family caregivers based on the information-motivation-behavioral skills model. The family caregivers' post-stroke care skills were evaluated. The patients' activities of daily living (ADLs) and complications were evaluated at baseline and immediately and 2-month post-intervention. Statistical analysis included chi-square test, Fisher's exact test, independent t-test, and two-way repeated measures' analysis of variance. Results After participating in the program, family caregivers in the experimental group significantly improved their post-stroke care knowledge and skills as compared to those in the control group (F = 585.81,p< .001). ADLs among post-stroke patients in the experimental group significantly increased over time and were higher than those in the control group (F = 46.01,p< .001). Moreover, complications among patients in the experimental group were less than those in the control group. Conclusions The post-stroke care program improved family caregivers' post-stroke care skills which resulted in improved functional status and decreased complications among post-stroke patients.
Objectives: To demonstrate the power of integrating three theoretical perspectives (Mentalization Theory, Perceptual Control Theory and the Communicative Impact model), which jointly illuminate the communication challenges and opportunities faced by family carers of people with dementia. To point the way to how this framework informs the design and delivery of carer communication and interaction training. Method: Conceptual synthesis based on a narrative review of relevant literature, supported by examples of family carers. Results: We use the conceptual models to show how the capacity to mentalize (“holding mind in mind”) offers a greater sense of control over internal and external conflicts, with the result that they can be deescalated in pursuit of mutual goals. Conclusions: The integrative conceptual framework presented here highlights specific psychological and relational mechanisms that can be targeted through carer training to enhance communication with a person living with dementia.
OBJECTIVES: To put into practice and to evaluate an initial dissemination programme for the Strategies for Relatives (START), a clinically and cost-effective manualised intervention for family carers of people with dementia. SETTING: We offered three-hour 'train-the-trainer' sessions through the British Psychological Society and Dementia UK. PARTICIPANTS: Clinical psychologists and admiral nurses across the UK. PRIMARY AND SECONDARY OUTCOME MEASURES: After the training session, attendees completed an evaluation. Attendees were asked how they had implemented START six and twelve months later, and to participate in telephone interviews about their experiences of what helps or hinders implementation oneyear after training. RESULTS: We trained 134 clinical psychologists and 39 admiral nurses through 14 training sessions between October 2014 and September 2015 in nine UK locations and made materials available online. The 40 survey respondents had trained 75 other staff. By this time, 136 carers had received START across eleven service areas. Findings from 13 qualitative interviews indicated that some clinical psychologists had begun to implement START, facilitated by buy-in from colleagues, existing skills in delivering this type of intervention, availability of other staff to deliver the intervention and support from the research team. Admiral nurses did not supervise other staff and were unable to cascade the intervention. Where START has not been used, common barriers included lack of staff to deliver the intervention and family carer support not being a service priority. Participants wanted the training to be longer. CONCLUSIONS: We trained clinical psychologists and admiral nurses to deliver and implement START locally. Results from survey respondents show that it was cascaded further and used in practice in some areas, but we do not know whether START was implemented by non-respondents. Future dissemination requires management buy-in, availability of practitioners and supervisors and consideration of other ways of delivery.
Elderly with Alzheimer requires care to continue their lives and such care is given mostly by families. Care of elderly with Alzheimer is a stressful process and it has negative consequences on physical and mental health of caregivers and reduces their quality of life. The present research aims to determine the effect of problem oriented coping strategies training on quality of life of family caregivers of elderly with Alzheimer. In this randomized clinical trial 72 caregivers were chosen by purposeful sampling and were divided randomly into control and experimental groups. Before the intervention, participants' quality of life was assessed by SF36 quality of life questionnaire. Eight sessions of educational intervention were held for the experimental group. The educational contents were included subjects such as problem solving, anger management and making an affective relationship. Two weeks after the intervention, information was recollected. Finding indicated that in intervention group, caregivers' quality of life significantly increased after the educational intervention (P= 0.001). After the intervention, caregivers' quality of life in experimental group was more than control group but such difference was not statistically significant (P= 0.112). Problem-oriented coping strategies training can enhance most dimensions of quality of life of caregivers and such education can be effective on their lives.
Background There is limited evidence for the acceptability of training for mental health professionals on service user- and carer-involved care planning. Aim To investigate the acceptability of a co-delivered, two-day training intervention on service user- and carer-involved care planning. Methods Community mental health professionals were invited to complete the Training Acceptability Rating Scale post-training. Responses to the quantitative items were summarized using descriptive statistics (Miles, ), and qualitative responses were coded using content analysis (Weber, ). Results Of 350 trainees, 310 completed the questionnaire. The trainees rated the training favourably (median overall TARS scores = 56/63; median 'acceptability' score = 34/36; median 'perceived impact' score = 22/27). There were six qualitative themes: the value of the co-production model; time to reflect on practice; delivery preferences; comprehensiveness of content; need to consider organizational context; and emotional response. Discussion The training was found to be acceptable and comprehensive with participants valuing the co-production model. Individual differences were apparent in terms of delivery preferences and emotional reactions. There may be a need to further address the organizational context of care planning in future training. Implications for practice Mental health nurses should use co-production models of continuing professional development training that involve service users and carers as co-facilitators.
Carers' views about their role in recovery are under-researched, and studies investigating their needs are underdeveloped. In this study, participatory action research was used; I was supported by a steering group of eight stakeholders to co-produce a training programme on recovery and data collection methods to explore the meaning of recovery for carers. The programme was delivered by me, an expert-by-experience with a diagnosis of schizophrenia, and a carer of her son with a similar diagnosis, to a group of eleven participants. Mainly qualitative data was collected together with supplementary quantitative socio-demographic data from the participants. Selected findings based on the carers' discussions are presented which focus on how the relationship between carers and professionals can most effectively facilitate service user recovery. Issues of information exchange between carers and professionals and the impact of patient confidentiality are highlighted, the nature of recovery practice is considered, and the participants' need to be regarded as 'experts' is addressed. A conceptual model of service design based on a recovery-oriented 'triangle of care' is presented. The potential implementation of this model in the current UK mental health service context is considered with the need for co-production between all stakeholders to ensure its development.
OBJECTIVE. The purpose of this study was to examine the effectiveness of the Family Caregiver Training Program (FCTP) for caregivers of people with dementia.METHOD. A random assignment control group research design with a 3-mo follow-up was implemented.RESULTS. Thirty-six family caregivers of people with dementia demonstrated an increase in activity of daily living (ADL) knowledge (p < .001) and maintenance of that knowledge 3 mo posttest. Caregiver confidence, regardless of group assignment, improved; however, it was not maintained. Burden, depression, and occupational performance and satisfaction remained unchanged for the intervention group; however, physical health as it pertained to quality of life improved 3 mo posttest (p < .001).CONCLUSION. Findings demonstrate that the FCTP can effectively provide knowledge to family caregivers on how to assist people with dementia with ADLs. Even when standard care was provided, there was limited information on ADLs that family caregivers faced daily.
Objective: Informal caregivers often experience psychological distress due to the changing functioning of the person with dementia they care for. Improved understanding of the person with dementia reduces psychological distress. To enhance understanding and empathy in caregivers, an innovative technology virtual reality intervention Through the D'mentia Lens (TDL) was developed to experience dementia, consisting of a virtual reality simulation movie and e-course. A pilot study of TDL was conducted. Methods: A pre-test–post-test design was used. Informal caregivers filled out questionnaires assessing person-centeredness, empathy, perceived pressure from informal care, perceived competence and quality of the relationship. At post-test, additional questions about TDL's feasibility were asked. Results: Thirty-five caregivers completed the pre-test and post-test. Most participants were satisfied with TDL and stated that TDL gave more insight in the perception of the person with dementia. The simulation movie was graded 8.03 out of 10 and the e-course 7.66. Participants significantly improved in empathy, confidence in caring for the person with dementia, and positive interactions with the person with dementia. Conclusion: TDL is feasible for informal caregivers and seems to lead to understanding of and insight in the experience of people with dementia. Therefore, TDL could support informal caregivers in their caregiving role.
Practice example of a model developed to support carers in understanding and dealing with challenging behaviours. The Caregiver appraisal model is a prospective model of caregiver stress which has been developed by Northumberland County Behaviour Support Service. The model was developed from work with seven family caregivers over 12 months and provides a framework for managing their distress based on their appraisals of the situations confronting them. It is a cognitive behavioural model. The article describes how the model was developed, how it works and points of practice. Interventions directed at the person with dementia need to address unmet need. Interventions focusing on the caregiver cover three areas: psychoeducation, behavioural interventions and cognitive interventions. The authors conclude that the approach has been positively received by carers, although the sample size of cases is currently small and wider testing is required to validate its efficacy.
Purpose of the Study: The evidence base for dementia care management interventions for informal caregivers (CGs) is strong, yet enrolment and sustained engagement in academic and community-based research trials is low. This study sought to examine rates and correlates of participation in a community-based, telephone-delivered dementia care management programme designed to address logistic and practical barriers to participation in CG trials and services. Design and Methods: Participants included 290 CGs of older, community-dwelling, low-income care recipients (CRs) who met criteria for enrolment in a collaborative dementia care management programme that provides assessment, psychosocial support and education, and connection to community resources via telephone. Cross-sectional analyses examined the association between CG-related (e.g., financial status, relationship to CR, caregiving burden) and CR-related (e.g., functional limitations, symptom severity) factors and CG enrolment and engagement. Results: The majority of CGs were non-Hispanic White, female, financially stable, and adult children of the CRs. Over half of CGs lived with the CR and provided 20 or more hours of care per week. Roughly half of CGs refused care management services. Adjusted logistic regression models revealed that perceived caregiving burden and financial status were related to initial enrolment and engagement in services once enrolled, respectively. Implications: A significant proportion of CGs refuse free, convenient, evidence-based dementia care management services, underscoring the need for further examination of correlates of programme acceptance. Nonetheless, community-based programmes that address barriers may improve enrolment and engagement rates among CGs, including those who are especially vulnerable to negative CG and CR outcomes.
This article examines the process of training informal carers on stroke units using the lens of power. Care is usually assumed as a kinship obligation but the state has long had an interest in framing the carer and caring work. Training carers in healthcare settings raises questions about the power of the state and healthcare professionals as its agents to shape expectations and practices related to the caring role. Drawing on Foucault's notion of disciplinary power, we show how disciplinary forms of power exercised in interactions between healthcare professionals and carers shape the engagement and resistance of carers in the process of training. Interview and observational field note extracts are drawn from a multi-sited study of a training programme on stroke units targeting family carers of people with stroke to consider the consequences of subjecting caring to this intervention. We found that the process of training informal carers on stroke units was not simply a matter of transferring skills from professional to lay person, but entailed disciplinary forms of power intended to shape the conduct of the carer. We interrogate the extent to which a specific kind of carer is produced through such an approach, and the wider implications for the participation of carers in training in healthcare settings and the empowerment of carers.
Background Parkinson’s disease progressively limits patients at different levels and as a result family members play a key role in their care. However, studies show lack of an integrative approach in Primary Care to respond to the difficulties and psychosocial changes experienced by them. The aim of this study is to evaluate the effects of a multidisciplinary psychoeducational intervention focusing on improving coping skills, the psychosocial adjustment to Parkinson’s disease and the quality of life in patients and family carers in a Primary Care setting. Methods This quasi-experimental study with control group and mixed methods was designed to evaluate a multidisciplinary psychoeducational intervention. Based on the study power calculations, 100 people with Parkinson’s disease and 100 family carers will be recruited and assigned to two groups. The intervention group will receive the ReNACE psychoeducational intervention. The control group will be given a general educational programme. The study will be carried out in six community-based health centres. The results obtained from the two groups will be collected for evaluation at three time points: at baseline, immediately after the intervention and at 6 months post-intervention. The results will be measured with these instruments: the Quality of Life Scale PDQ-39 for patients and the Scale of Quality of Life of Care-givers SQLC for family carers, and for all participants the Psychosocial Adjustment to Illness scale and the Brief COPE Inventory. Focus groups will be organised with some patients and family carers who will have received the ReNACE psychoeducational intervention and also with the healthcare professionals involved in its development. Discussion An important gap exists in the knowledge and application of interventions with a psychosocial approach for people with PD and family carers as a whole. This study will promote this comprehensive approach in Primary Care, which will clearly contribute in the existing knowledge and could reduce the burden of PD for patients and family carers, and also in other long-term conditions. Trial registration NCT03129425 (ClinicalTrials.gov). Retrospectively registered on April 26, 2017.
Objectives: To update previous reviews and provide a more detailed overview of the effectiveness, acceptability and conceptual basis of communication training-interventions for carers of people living with dementia. Method: We searched CINAHL Plus, MEDLINE and PsycINFO using a specific search and extraction protocol, and PRISMA guidelines. Two authors conducted searches and extracted studies that reported effectiveness, efficacy or acceptability data regarding a communication training-intervention for carers of people living with dementia. Risk of bias was assessed using the Cochrane Collaboration guidelines. Quality of qualitative studies was also systematically assessed. Results: Searches identified 450 studies (after de-duplication). Thirty-eight studies were identified for inclusion in the review. Twenty-two studies focused on professional carers; 16 studies focused mainly on family carers. Training-interventions were found to improve communication and knowledge. Overall training-interventions were not found to significantly improve behaviour that challenges and caregiver burden. Acceptability levels were high overall, but satisfaction ratings were found to be higher for family carers than professional carers. Although many interventions were not supported by a clear conceptual framework, person-centred care was the most common framework described. Conclusion: This review indicated that training-interventions were effective in improving carer knowledge and communication skills. Effective interventions involved active participation by carers and were generally skills based (including practicing skills and discussion). However, improvements to quality of life and psychological wellbeing of carers and people living with dementia may require more targeted interventions.
Feasibility of a multidisciplinary caregiving training protocol for young caregivers in families with ALS. Objectives: To assess the feasibility of a multidisciplinary young caregiver group training protocol for children and youth who provide care to a family member with ALS. Method: Peer group experiential young caregiver model based on theories of self-management and self-efficacy. Training conducted by a multidisciplinary team of therapists in ALS (PT, OT, Speech and social work), as well as assistive device vendors. Demographic data, caregiving tasks and evaluations were collected. Results: The model is feasible for both youth and therapists. Youth found benefit, skill acquisition, and mastery by asking questions, teaching back skills to the group and engaging with peers. Conclusion: This project demonstrates young caregivers will participate in training, and engage with “like” peer group. Future projects will focus on developing a structured survey and observation, testing efficacy in larger groups.
Carers of individuals with eating disorders (EDs) report high levels of burden and distress and describe a number of unmet needs. As a result, a number of interventions have been designed to support carers, including the “Maudsley eating disorder collaborative care skills workshops,” which comprise six 2‐hr workshops delivered over 3 months for parents and carers of people with EDs. The current study aimed to test a proof‐of‐concept that this workshop could be effectively delivered in 1 day. An additional aim was to assess whether the workshop had direct effects on carer skills. A nonexperimental repeated measures research design was employed, giving measures before and after a 1‐day workshop. Results suggested significant increases in carer self‐efficacy and carer skills, with moderate to large effect sizes. Qualitative analyses supported these results whilst also generating ideas to improve the 1‐day workshop.
Purpose The purpose of this paper is to reflect on the development of a recovery-oriented training programme for mental health care-givers. It also considers the effectiveness of using participatory research methods that promote involvement of people with diverse expertise to co-produce this programme. It presents a rationale for developing recovery-oriented training, which employs blended learning, comprising face-to-face and e-learning. Design/methodology/approach A small advisory group consisting of professionals, experts-by-experience (service users) and -by-caring (care-givers) and an academic developed a blended learning programme about the recovery approach for mental health carer-givers. This paper details the participatory approach supported by an action research cycle that contributed to the design of the programme, and the specific impact of experiential knowledge on its development. Findings Reflections on the advisory group process are described that led to the co-production of the course. This leads to consideration of the value of using this research approach to develop a carer-focused programme. The content of the recovery-oriented training programme is presented which adopts blended learning. This leads to discussion of potential of this format to improve carers’ access to training. Originality/value It is proposed that this recovery-oriented course, building on a previous study, has the potential to positively influence outcomes for the training programme participants (the care-givers) and the person they support. It is suggested that blended learning may in part overcome some of the barriers carers experience to accessing and participating in traditional interventions. Reflections on the process of co-production underline the value of participatory research in designing this recovery-oriented course for carers.
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.
This experimental study was carried out using a pre-test/post-test control group model to evaluate the effect of a "Brief Cognitive Behavioural Stress Management Programme" (BCBSMP) on mental status, coping with stress attitude, and caregiver burden while caring for patients with schizophrenia. A total of 61 caregivers who provided care for schizophrenia patients at a community mental health centre were included in the study. Caregivers were matched according to gender and scale scores and were assigned to either the study or the control group. Before and after the programme, caregivers in both groups were given the "Demografic Data Form", "Zarit Caregiver Burden Scale", "Coping Attitude Evaluation Scale", "Stress Indicators Scale", and the "General Health Survey-28". Caregivers in the study group were taken to a BCSMP one session per week (each session lasted 120min) for seven weeks. We determined that the stress indicators, the risk of developing a psychological disorder, and caregiver burden decreased and skills related to both the problem-oriented and emotion-oriented aspects of stress increased in the study group after the programme.
Aim. The aim of this study was to evaluate a heart failure education programme developed for patients and carers in Thailand. Background. Heart failure is major health problem. This is the first trial of a family-based education programme for heart failure patients and carers residing in rural Thailand. Design. Randomized controlled trial. Methods. One hundred patient-carer dyads attending cardiac clinics in southern Thailand from April 2014 - March 2015 were randomized to usual care (n = 50) or a family-based education programme (n = 50) comprising face-to-face counselling, a heart failure manual and DVD and telephone support. Assessments of heart failure knowledge, health-related quality of life, self-care behaviours and perceived control were conducted at baseline, three and six months. Results. Linear mixed-effects model revealed that patients and carers who received the education programme had higher knowledge scores at three and six months than those who received usual care. Among those who received the education programme, when compared with those who received usual care, patients had better self-care maintenance and confidence, and health-related quality of life scores at three and six months, and better self-care management scores at six months, whereas carers had higher perceived control scores at three months. Conclusion. Addressing a significant service gap in rural Thailand, this family-based heart failure programme improved patient knowledge, self-care behaviours and health-related quality of life and carer knowledge and perceived control.
Aims. The aim of this study was to explore distinct trajectories of caregivers' depressive symptoms and the effects of a training programme on these trajectories over 18 months after the programme. Background. Overall effects of caregiver-training programmes on family caregivers' depressive symptoms have been reported, but few studies explored distinct courses of changes in caregivers' depressive symptoms and followed up intervention effects on these distinct courses. Design. Randomized clinical trial. Methods. Family caregivers (n = 116) were randomly assigned into experimental (n = 57) and control (n = 59) groups. The experimental group received the training programme with telephone consultation and the control group received written educational materials and social telephone follow-ups. Caregivers' depressive symptoms were assessed from June 2009 - March 2012 by selfcompleted questionnaires before, at 2 weeks and 3, 6, 12 and 18 months after the intervention. Groups of individual trajectories were distinguished using groupbased trajectory modelling. Results. Caregivers' depressive symptoms fell into three stable trajectories: nondepressed, mildly blue and depressed. After controlling for covariates, caregivers who received the caregiver-training programme were less likely than those who did not experience persistent depressive symptoms (b = -1.92, odds ratio = 0.15, P < 0.05). Conclusion. Depressive symptoms of family caregivers of persons with dementia were relatively stable and followed three distinct courses: non-depressed, mildly blue and depressed. Therefore, caregivers' depressive symptoms should be assessed as early as possible. Caregivers in the experimental group had a lower probability of persistent depressive symptoms than caregivers in the control group. Therefore, this training programme can be used by healthcare providers for persons with dementia and their caregivers. Trial registration number: NCT02667951. References
A family peer-education program for mental disorders was developed in Japan, similar to existing programs in the United States and Hong Kong. Families that serve as facilitators in such programs may enhance their caregiving processes and, thereby, their well-being. This study's aim was to describe how families' caregiving experiences change, beginning with the onset of a family member's mental illness, through their involvement in a family group or peer-education program as participants then facilitators. Thus, this study was conducted in a family peer-education program for mental disorders in Japan. Group interviews were conducted with 27 facilitators from seven program sites about their experiences before, during, and after becoming facilitators. Interview data were coded and categorized into five stages of caregiving processes: (1) withdrawing and suppressing negative experiences with difficulty and regret (2) finding comfort through being listened to about negative experiences (3) supporting participants' sharing as facilitators (4) understanding and affirming oneself through repeated sharing of experiences and (5) finding value and social roles in one's experiences. The third, fourth, and fifth stages were experienced by the facilitators. The value that the facilitators placed on their caregiving experiences changed from negative to positive, which participants regarded as helpful and supportive. We conclude that serving as facilitators may improve families' caregiving processes.
Background: Psychosocial interventions for carers of people with dementia are increasingly recognized as playing an important role in dementia care. We aim to systematically review the evidence from existing systematic reviews of psychosocial interventions for informal carers of people with dementia. Methods: Thirty-one systematic reviews were identified; following quality appraisal, data from 13 reviews, rated as high or moderate quality, were extracted. Results: Well-designed, clearly structured multi-component interventions can help maintain the psychological health of carers of people with dementia and delay institutionalization of the latter. To be most effective, such interventions should include both an educational and a therapeutic component; delivery through a support group format may further enhance their effectiveness. Conclusions: Successful translation of evidence into practice in this area remains a challenge. Future research should focus on determining the most cost-effective means of delivering effective multi-component interventions in real-world settings; the cost-effective potential of technology-based interventions is considerable.
Background: The prevalence of heart failure is increasing in Lebanon but to date there is no systematic evaluation of a disease management intervention. Objective: The aim of this study was to evaluate the effect of involving family caregivers in the self-care of patients with heart failure on the risk of hospital readmission. Design: A multi-site, block randomised controlled trial. Settings The study was conducted over a 13-month period in three tertiary medical centres in Beirut and Mount Lebanon, Lebanon. Participants: Adult patients presenting for an exacerbation of heart failure to one of the study centres were included. Patients with limited life expectancy or physical functionality, planned cardiac bypass or valve replacement surgery, living alone or in nursing homes, or aged less than 18 years were excluded. Methods: Patients allocated to the intervention group and their family caregivers were provided with a comprehensive, culturally appropriate, educational session on self-care maintenance and symptom management along with self-care resources. The usual care group received the self-care resources only. Follow-up phone calls were conducted 30 days following discharge by a research assistant blinded to treatment assignment. The primary outcome was hospital readmission and the secondary outcomes were self-care, quality of life, major vascular events and healthcare utilization. Results: The final sample included 256 patients hospitalized for heart failure randomised into control (130 patients) and intervention (126 patients) groups. The mean age was 67 (SD = 8) years, and the majority (55%) were male. Readmission at 30 days was significantly lower in the intervention group compared to the control group (n = 10, 9% vs. n = 20, 19% respectively, OR = 0.40, 95% CI = 0.02, 0.10, p = 0.02). Self-care scores improved in both groups at 30 days, with a significantly larger improvement in the intervention group than the control group in the maintenance and confidence sub-scales, but not in the self-care management sub-scale. No differences were seen in quality of life scores or emergency department presentations between the groups. More patients in the control group than in the intervention group visited health care facilities (n = 24, 23% vs. n = 12, 11% respectively, OR = 0.39, 95% CI = 0.18, 0.83, p = 0.01). Conclusion: The trial results confirmed the potential of the family-centred self-care educational intervention under evaluation to reduce the risk of readmission in Lebanese patients suffering from exacerbated heart failure. Further research is needed to validate these findings with longer periods of follow-up and to identify the intervention components and intensity required to induce sustained benefits on patients' self-care management and quality of life.
The first aim of this systematic review was to evaluate the evidence for family psychoeducation (FPE) interventions for major depressive disorder (MDD). A second aim was to compare the efficacy of different modes of delivering face-to-face FPE interventions. Ten studies (based on nine distinct samples) were identified comprising four single-family studies, four multifamily studies, one single versus multifamily comparative study, and one peer-led, mixed-diagnosis study. Seven studies measured patient functioning and six reported positive outcomes. Six studies measured carer's well-being and four reported positive outcomes. Results provide preliminary evidence that FPE leads to improved outcomes for patient functioning and family-carer's well-being for persons with depression. The implications for future development and delivery ofFPE interventions for MDD are discussed.
Background: This systematic review aims to review the literature on trial-based economic evaluations of non-pharmacological interventions directly targeted at persons with dementia as well as persons with mild cognitive impairment and their respective caregivers.; Methods: A systematic literature research was conducted for the timeframe from 2010 to 2016 in the following databases: Centre for Reviews and Dissemination, EconLit, Embase, Cochrane Library, PsycINFO and PubMed. Study quality was assessed according to the Drummond criteria.; Results: In total sixteen publications were identified. Health economic evaluations indicated the cost-effectiveness of physical exercise interventions and occupational therapy. There was also evidence to suggest that psychological and behavioral therapies are cost-effective. Health economic studies investigating psychosocial interventions mainly targeted towards informal caregivers showed inconsistent results.; Conclusions: Due to the increasing prevalence of dementia non-pharmacological interventions and their health economic impact are of increasing importance for health care decision-makers and HTA agencies.
Many informal caregivers of persons with dementia suffer adverse health consequences. Although established psychoeducation programs are known to benefit caregivers, attending in-person programs is challenging for them. To address this challenge, the Savvy Caregiver Program, an evidence-based psychoeducation program with demonstrated effectiveness for caregiving and disease-related outcomes, was transformed into an on-line program, Tele-Savvy. This article describes the rationale for and design of a prospective longitudinal randomized controlled trial (targeted N = 215), currently underway. The trial aims to establish Tele-Savvy's efficacy in (i) reducing the negative effects of caregiving on caregivers; (ii) promoting care recipients' quality of life; (iii) improving caregiver mastery; and to explore (iv) Tele-Savvy's efficacy among caregivers of different races/ethnicities. The mediating role of mastery will be assessed. Participants are randomized to the active condition (immediate Tele-Savvy participation), attention control, or usual care. Participants in the two latter conditions will complete Tele-Savvy 6 months post-baseline. Multilevel mixed effects models will be used to examine changes in outcomes and to model group by time (months since baseline) interactions. The exploratory aim will be addressed using analysis of covariance and qualitative analysis. This trial's results may be used by healthcare and community organizations to implement Tele-Savvy in dementia care, increasing caregivers' access to this evidence-based intervention.
Background: More than 80% of bedridden patients develop bedsores in home care settings. Training of informal caregivers can significantly affect the quality of care to these patients.; Objective: The objective of this study is to compare the effectiveness of two caregiver training strategies on prevention of bedsores among bedridden patients.; Methods: The study was carried out in Chandigarh. The study center was at PGIMER, Chandigarh. Seventy-eight bedridden patients being taken care in their homes were identified. These were randomly allocated into two groups. Group A received Prevention Package I, i.e., self-instruction Manual (SIM), training, and counseling. Group B received Prevention Package 2, i.e., only SIM. All these patients were followed up periodically for 1 year. During each follow-up, patients were observed for bedsore development. Braden scale was used to assess the risk factors of bedsores. Katz scale was used to evaluate the level of functional dependence of patients. Descriptive statistics was used to analyze the data.; Results: The percentage reduction of number of patients at risk of bedsore development as per various domains of Braden Scale was more in Group A as compared to Group B on each successive visit. There was 100% improvement in mobility level in the patients who were totally dependent in both the groups. However, in moderately dependant patients, the improvement in mobility level was more (87%) in Group A as compared to Group B (75%). All the caregivers complied fully with instructions postintervention.; Conclusion: Training of caregivers for the prevention of bedsores among the bedridden patients was effective in improving the practices of the caregivers and also in reducing the risk factors of bedsores. One-to-one training with SIM distribution yielded better results than the use of only SIM.
Objective: To assess the feasibility of conducting a randomized controlled trial of an instructional and educational stroke DVD and determine the feasibility and preliminary efficacy of this intervention in a multinational context.; Design: Non-funded, pilot randomized controlled trial of intervention versus usual care.; Setting: International, multicentre, community-based.; Participants: Community-living adults up to three years post stroke with moderate to severe disability and their nominated informal caregivers.; Interventions: Intervention patients viewed and practised rehabilitation techniques demonstrated in the DVD over six weeks.; Main Measures: Trial feasibility by number of active recruitment sites, recruitment efficiency, randomization and follow-up. Intervention feasibility by patient and caregiver impressions. Preliminary efficacy by the quality of life - 5-level EuroQol-5D (EQ-5D) health status measure, General Health Questionnaire and Centre for Epidemiological Studies-Depression at two months.; Results: In total, 14 recruitment sites were established across eight countries. Recruitment was achieved at nine (64%) sites. Over 16 months, 66 participants were recruited (mean (SD) age = 63.5 (12.47) years) and randomized to intervention ( n = 34) and control ( n = 32) groups. In total, 54 (82%) completed a follow-up assessment. Patient and/or caregiver comments about the benefits and barriers to accessing the intervention were mixed. There were no significant between-group differences in outcomes at two months ( P > 0.05).; Conclusion: Conducting a multinational trial of a stroke DVD requires full funding. The intervention was acceptable to some patients and their caregivers, yet a generalized education approach did not fully meet their needs and/or expectations. A more individualized method may be required to meet peoples' changing needs during stroke recovery.
Background: Face-to-face/group education for palliative caregivers is successful, but relies on caregivers travelling, being absent from the patient, and rigid timings. This presents inequities for those in rural locations. Aim: To design and test an innovative distance-learning educational package (PrECEPt: PalliativE Caregivers Education Package). Design: Single-arm mixed-method feasibility proof-of-concept trial (ACTRN12616000601437). The primary outcome was carer self-efficacy, with secondary outcomes focused on caregiver preparedness and carer tasks/needs. Analysis focused on three outcome measures (taken at baseline and 6 weeks) and feasibility/acceptability qualitative data. Setting and participants: A single specialist palliative care service. Eligible informal caregivers were those of patients registered with the outpatient or community service, where the patient had a prognosis of ≥12 weeks, supporting someone with nutrition/hydration and/or pain management needs, proficient in English and no major mental health diagnosis. Results: Two modules were developed and tested (nutrition/hydration and pain management) with 18 caregivers. The materials did not have a statistically significant impact on carer self-efficacy. However, statistically significant improvements were observed on the two subsidiary measures of (1) caregiving tasks, consequences and needs (p = 0.03, confidence interval: 0.72, 9.4) and (2) caregiver preparedness (p = 0.001, confidence interval: -1.22, -0.46). The study determined that distance learning is acceptable and feasible for both caregivers and healthcare professionals. Conclusion: Distance education improves caregiver preparedness and is a feasible and acceptable approach. A two-arm trial would determine whether the materials benefitted caregivers and patients compared to a control group not receiving the materials. Additional modules could be fruitfully developed and offered.
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.
Background: Informal cancer caregivers provide essential support to cancer patients, including performing direct medical/nursing tasks, assisting with activities of daily living, and offering social support. This study examined associations between the receipt of medical/nursing skills training and the caregiver burden as well as the mediation of caregiving confidence on this relationship in a sample of caregivers of lung and colorectal cancer patients.; Methods: Caregivers who had been identified by cancer patients in the Cancer Care Outcomes Research and Surveillance consortium completed a questionnaire assessing the care provided, the type of medical/nursing skills training received, the burden (measured with the modified short-form Zarit Burden Interview), and the confidence in caring for their patient's physical needs. Regression models that had been adjusted for sociodemographic, caregiver, and care recipient characteristics assessed the relationship between training received and burden, and a mediation analysis assessed the role of confidence in this relationship.; Results: Six hundred forty-one caregivers performed some type of medical/nursing task, with 59% (n = 377) reporting that they did not receive training for all the care provided. Caregivers reported moderate levels of burden (mean summary score, 32.07; standard deviation, 12.66; possible range, 14-70), and a lack of receipt of training was associated with greater levels of burden (b = 2.60; standard error, 0.98; P = .01). Confidence partially mediated the relation between training and burden (Sobel's t = 1.90; P = 0.03).; Conclusions: As the number of cancer patients and caregivers increases, understanding how best to reduce the caregiver burden is necessary. Skills training is a potential area for interventions, but research on how best to provide training for caregivers (ie, the content, mode of delivery, and timing) is needed.
BACKGROUND: Problematic communication among providers, patients, and their family members can affect the quality of patient care, causing stress to all parties involved and decreased opportunities for collaborative decision making. OBJECTIVES: The purpose of this article is to present one case from a pilot study of a family caregiver intervention focused on communication. METHODS: The nurse-delivered communication intervention includes a written communication guide for family caregivers, as well as a one-time nurse communication coaching call. The call is aimed at identifying caregiver communication concerns, providing communication education, and role playing problematic communication. FINDINGS: Psychological distress and caregiver confidence in communication were improved for the caregiver. Data presented from the case study demonstrate the need for family caregiver communication supportand training and the potential benefits of such training.
Aim: Behavioral and psychological symptoms of dementia are often managed inappropriately with antipsychotic medicines. The TOP 5 program, which involves recording up to five relevant and meaningful tips that assist in personalizing care for the person with dementia, has been tested in the hospital setting and transitions of care in Australia, and has been found to be useful. Our study aimed to adapt the TOP 5 program as a strategy to support people with dementia in a primary care setting and to test the acceptability of our adapted TOP 5 program materials. Methods: The adapted TOP 5 program materials were delivered as part of a larger intervention by the Australian Government Department of Veterans' Affair's Veterans' Medicines Advice & Therapeutic Education Services program to reduce inappropriate antipsychotic use in veterans with dementia. This study focuses on the acceptability of our adapted TOP 5 program materials for ascertaining carer or family members' advice about what actions might help to calm their relative when she or he is agitated. Educational materials relating to the resources for implementing the adapted TOP 5 program together with the one-page survey response to evaluate acceptability of our adapted TOP 5 program materials were mailed to 4827 general practitioners (GPs), 8381 accredited pharmacists, and 2510 Residential Aged Care Facilities. Results: We received survey response forms from 350 (7%) GPs, 366 (4%) pharmacists, and 196 (8%) residential aged care facilities. Although the response rate was low, 90% of respondents in all groups indicated they were very likely or moderately likely to assist family members and carers of patients with dementia to identify their top tips to personalize care. GPs who found the information useful more frequently indicated that they were likely to assist family members and carers in identifying their top tips. Approximately one-third of respondents reported they had received positive feedback from families regarding the helpfulness of sharing their practical tips for care of their loved one. Pharmacists indicated having the tips would assist them when undertaking medicines reviews. Conclusions: Our findings suggest that the TOP 5 program, or an adaptation of the TOP 5 program, such as ours, has potential to improve the health and care of people with dementia and their carers by using patient centerd nonpharmacological approaches and avoiding the unnecessary use of antipsychotics for behavioral and psychological symptoms of dementia. Longer-term follow-up would help to establish whether the apparent benefits persist.
Keshet, a course for family members of persons’ coping with mental illness, was developed to enhance positive family cognitive communication skills. Improving communication with the use of mediation techniques, primarily used by therapists, creates a learning environment viewed as a strategy of Knowledge Translation. To examine the effectiveness of Keshet in improving attitudes, problem solving, communication skills and attenuation of burden a quasi-experimental research design was applied with study and control condition. The same group of participants (N = 38) completed questionnaires at different stages: 3 months prior to course, initiation and completion. Following participation, significant changes were observed in attitudes regarding knowledge of how to cope and interact with family member. A correlation was found between improved knowledge and decline in burden. Implementing interventions which provide caregivers with professional “know-how” leads to lessened burden, thus contributing to maintaining well-being of family caregiver population.
Background: Dementia care is predominantly provided by carers in home settings. We aimed to identify the priorities for homecare safety of people with dementia according to dementia health and social care professionals using a novel priority-setting method.; Methods: The project steering group determined the scope, the context and the criteria for prioritization. We then invited 185 North-West London clinicians via an open-ended questionnaire to identify three main problems and solutions relating to homecare safety of people with dementia. 76 clinicians submitted their suggestions which were thematically synthesized into a composite list of 27 distinct problems and 30 solutions. A group of 49 clinicians arbitrarily selected from the initial cohort ranked the composite list of suggestions using predetermined criteria.; Results: Inadequate education of carers of people with dementia (both family and professional) is seen as a key problem that needs addressing in addition to challenges of self-neglect, social isolation, medication nonadherence. Seven out of top 10 problems related to patients and/or carers signalling clearly where help and support are needed. The top ranked solutions focused on involvement and education of family carers, their supervision and continuing support. Several suggestions highlighted a need for improvement of recruitment, oversight and working conditions of professional carers and for different home safety-proofing strategies.; Conclusions: Clinicians identified a range of suggestions for improving homecare safety of people with dementia. Better equipping carers was seen as fundamental for ensuring homecare safety. Many of the identified suggestions are highly challenging and not easily changeable, yet there are also many that are feasible, affordable and could contribute to substantial improvements to dementia homecare safety.;
Family carers of people who have long term illness often experience physical and mental health morbidities, and burden. While there is good evidence to suggest that carers benefit from psychosocial interventions, these have primarily been delivered via face-to-face individual or group-formats. eHealth interventions offer a novel, accessible and self-paced approach to care delivery. Whether these are effective for carers' wellbeing has been little explored. This paper reports the first comprehensive systematic review in this area. A total of 78 studies, describing 62 discrete interventions, were identified. Interventions commonly aimed to promote carers' knowledge, self-efficacy, caregiving appraisal, and reduce global health morbidities. Interventions were offered to carers of people with a wide range of long term illness; dementia has been the most researched area, as reported in 40% of studies. Clinical and methodological heterogeneity in interventions precluded meta-analyses, and so data were analysed narratively. The most popular approach has comprised psychoeducational interventions delivered via an enriched online environment with supplementary modes of communication, such as network support with professionals and peers. Overall, carers appreciate the flexibility and self-paced nature of eHealth interventions, with high rates of satisfaction and acceptability. More studies using robust designs are needed to extend the evidence base.
The VA Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides landmark support for family caregivers of post-9/11 veterans. This study examines PCAFC support for veterans with and without PTSD and assesses whether program effect differs by PTSD status using a pre-post, non-equivalent, propensity score weighted comparison group design (n = 24,280). Veterans with and without PTSD in PCAFC accessed more mental health, primary, and specialty care services than weighted comparisons. PCAFC participation had stronger effects on access to primary care for veterans with PTSD than for veterans without PTSD. For veterans with PTSD, PCAFC support might enhance health service use.
Basic knowledge regarding schizophrenia, having positive attitudes towards it, and possessing the necessary care skills are crucial aspects for caregivers have in order to provide sustainable care for a relative with schizophrenia. Coaching can facilitate successful caregiving through the understanding of a caregiver's knowledge, attitudes, and skills. This study examined the effectiveness of a coaching program in enhancing family caregivers' knowledge, attitudes, and skills related to caring for persons with schizophrenia. 100 primary family caregivers were randomly recruited. Of these, 50 participated in a coaching program, which lasted 7 weeks and employed implementation methods such as discussion, watching videos, providing information, training, observation, demonstration, role-plays, and telephone follow-ups. The coaching group participants showed significantly higher knowledge levels (F = 85.77, p < 0.001), lower levels of negative attitudes towards schizophrenia (F = 13.22, p < 0.001), and higher skill levels (F = 22.94, p < 0.001) than those in the routine care group. The results also discovered significant improvements in knowledge, attitudes, and caregiving skills on follow-ups at week 2 and 1 month after the completion of the program in the coaching group, as compared to those in the routine care group (p <0.001). The coaching program examined in this study clearly indicated positive effects on caregiver knowledge, attitudes, and caregiving skills when compared with routine care.
Background: Confabulations are often observed in patients with Alzheimer's disease (AD) and can increase family caregivers’ burdens. Previous studies have focused on the relationship between confabulation and cognitive ability. However, few studies have investigated the association between confabulation and familial factors. Here, we aimed to examine whether confabulation relates to familial factors, such as the level of family caregivers’ expressed emotion or the level of functioning of the family. Methods: Twenty‐seven outpatients with AD and their family caregivers participated in this study. We examined confabulations about episodic memory, semantic memory, and future planning using the Modified Confabulation Battery (MCB). We investigated correlations between scores on the MCB and scores on the Mini‐Mental State Examination (MMSE), Geriatric Depression Scale (GDS), Family Attitude Scale (FAS), and the Family Adaptability and Cohesion Evaluation Scale. Multiple regression analyses were performed using the total scores on the MCB and domain‐specific scores on the MCB as dependent variables, and the scores on the MMSE, GDS, and FAS as independent variables. Results: MCB scores were positively related to FAS scores (P < 0.01) and negatively to GDS scores (P < 0.05), but not to MMSE scores. Regarding the three domains the MCB measured, confabulation about episodic memory and future planning showed a positive relationship with FAS scores. Conclusions: Family attitude was the factor most related to confabulation in our study. Patients with AD may attempt to avoid confronting family caregivers’ high emotional expression through confabulation, or confabulation itself might result in high emotional expression among family caregivers. Psychoeducational or therapeutic approaches for family caregivers might reduce confabulation in patients with AD.
Background: Shared decision-making (SDM) is a means of allowing people with dementia to take part in making choices, be autonomous and participate in social activities. Involving them in SDM is an important way of promoting social health. However, including families and dementia residents in decision-making can be challenging for care staff working in nursing homes. The objective of this study was to identify barriers and facilitators regarding the implementation of an SDM framework for care planning in two nursing homes, one in Italy and one in the Netherlands. Methods: Focus group interviews were conducted with healthcare professionals who, after being trained, applied the SDM framework. Content analysis was used to analyze the data. Results:Six months after the feasibility trial, focus group interviews with healthcare professionals (n= 10 in Italy;n= 9 in the Netherlands) were held. We found 6 themes and 15 categories. Within these themes, facilitators and barriers were identified. The categories of team collaboration, communication skills and nursing home policy were found to be facilitators to the implementation process, whereas regulations, lack of funding and of involvement of family caregivers were the main barriers. Family attitudes towards SDM could be both. The main difference between countries concerned the residents’ cognitive status that influenced their degree of involvement. Conclusion: Communication skills training for professionals, training of family caregivers, and involvement of the management in the implementation process seem to be crucial factors in successfully implementing SDM in nursing homes, and increasing the involvement of families and dementia residents in decision-making.
Background: Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family member. This research is a pilot project aiming to evaluate how basic skills training (BST) given to family caregivers could enhance the quality of life (QoL) of palliative care cancer patients in Indonesia.; Methods: The study is a prospective quantitative with pre and post-test design. Thirty family caregivers of cancer patients were trained in basic skills including showering, washing hair, assisting for fecal and urinary elimination and oral care, as well as feeding at bedside. Patients' QoL were measured at baseline and 4 weeks after training using EORTC QLQ C30. Hypothesis testing was done using related samples Wilcoxon Signed Rank. A paired t-test and one-way ANOVA were used to check in which subgroups was the intervention more significant.; Results: The intervention showed a significant change in patients' global health status/QoL, emotional and social functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation and financial hardship of the patients. Male patient's had a significant effect on global health status (qol) (p = 0.030); female patients had a significant effect on dyspnea (p = 0.050) and constipation (p = 0.038). Younger patients had a significant effect in global health status/QoL (p = 0.002). Patients between 45 and 54 years old had significant effect on financial issue (p = 0.039). Caregivers between 45 and 54 years old had significant effect on patients' dyspnea (p = 0.031).; Conclusions: Basic skills training for family caregivers provided some changes in some aspects of QoL of palliative cancer patients. The intervention showed promises in maintaining the QoL of cancer patients considering socio-economic and cultural challenges in the provision of palliative care in Indonesia.;
This is the eighth paper in the Care Alliance Ireland Discussion Paper series. The papers in this series are not intended to present a definitive account of a particular topic, but to introduce a less-discussed, sensitive or perhaps controversial topic for discussion within the wider community of practitioners, policy makers, researchers and other interested parties. This often takes the form of a literature review (where possible), along with a discussion of views which have been shared with a member of the Care Alliance team either by our member organisations or Family Carers themselves. In some cases this will be a topic which has been raised and shared in the media or social spaces online.
Caring for a “loved one” has long been acknowledged as having real implications for Family Carers’ physical and mental health, along with economic, employment and other impacts. Not all of these impacts, however, are negative. The positive impact of providing care – often significant levels of care – has been well researched.
However, much of this research presupposes that the person being cared for is, indeed, a “loved one”. What happens when the person being cared for isn’t particularly well-loved? How do Family Carers who perhaps do not even like the person they are providing care for deal with the effects of this negative, maybe even toxic, relationship?
This paper focuses on three particular “scenarios” in which Family Carers may need to manage difficult, negative and even toxic relationships while providing care to a family member or friend. These are:
Alzheimer's disease burdens not only the patient, but also the older person's informal (family) caregiver. This burden has been linked to negative health effects for caregivers. The online course could be an important tool for caregivers in management of Alzheimer's disease Patients in Romania. The study evaluate the impact of burden in caregiving and the improvement of quality of life for caregiver after ELMI course. ELMI online course is the first online course in Romania designed to decrease the impact of informal (family) caregiver burden and to improve the quality of life for caregivers and also the care of persons with AD patients through the educational program especially designed to face the social, psychological and economic pressures.
Objectives: To test the feasibility of a telephone-based intervention that prepares family caregivers to recognize delirium symptoms and how to communicate their observations to healthcare providers.; Design: Mixed-method, pre-post quasi-experimental design.; Setting: A Midwest Veterans Affairs Medical Center and a nonprofit health system.; Participants: Forty-one family caregiver-older adult dyads provided consent; 34 completed the intervention.; Intervention: Four telephone-based education modules using vignettes were completed during the 3 weeks before the older adult's hospital admission for elective hip or knee replacement. Each module required 20 to 30 minutes.; Measurements: Interviews were conducted before the intervention and 2 weeks and 2 months after the older adult's hospitalization. A researcher completed the Confusion Assessment Method (CAM) and a family caregiver completed the Family Version of the Confusion Assessment Method (FAM-CAM) 2 days after surgery to assess the older adults for delirium symptoms.; Results: Family caregivers' knowledge of delirium symptoms improved significantly from before the intervention to 2 weeks after the intervention and was maintained after the older adult's hospitalization. They also were able to recognize the presence and absence of delirium symptoms in the vignettes included in the intervention and in the older adult after surgery. In 94% of the cases, the family caregiver rating on the FAM-CAM approximately 2 days after the older adult's surgery agreed with the researcher rating on the CAM. Family caregivers expressed satisfaction with the intervention and stated that the information was helpful.; Conclusion: Delivery of a telephone-based intervention appears feasible. All family caregivers who began the program completed the four education modules. Future studies evaluating the effectiveness of the educational program should include a control group.
Patients with cancer who live at home often require help with activities of daily living, basic medical care (eg, injections), social needs, and patient advocacy. Most of that support comes from intimate caregivers, typically members of the patient's family. These family caregivers themselves require support so that they can be effective and maintain their own well-being while caring for the patient with cancer. Research shows that support for caregivers contributes to achieving these goals. We propose a four-part framework for supporting family caregivers: (1) assess caregivers' needs using formal measures, just as the cancer patient's own needs are assessed, (2) educate caregivers for their caregiving roles, most notably, with training in the low-level medical support that cancer patients require at home, (3) empower caregivers to become full-fledged members of the patient's cancer team, all working toward common goals, and (4) assist caregivers proactively in their duties, so that they retain a sense of control and self-efficacy rather than having to react to imminent medical crises without sufficient resources at their disposal. Funding support for family caregivers requires refocusing on the overall well-being of the patient-caregiver dyad rather than just on the patient. It will necessitate a paradigm shift in reimbursement that recognizes the need for holistic cancer care.
Background: People with dementia and family carers often experience difficulties communicating together. These difficulties are considered to contribute significantly to the depression, anxiety and negative feelings such as guilt often reported by dementia family carers. Aims: To develop and contribute to the theory and evidence base for single‐component, psychosocial interventions that address these difficulties by evaluating the effectiveness of the Talking Sense programme which was designed to reflect existing best evidence. Methods & Procedures: Talking Sense was delivered as an individualized, one to one, cognitive behavioural approach for developing knowledge, skills, thinking and behaviour of dementia family carers in managing communication difficulties. In this study, a randomized controlled trial compared 27 carers who completed three one‐to‐one individualized sessions using Talking Sense with 25 carers who received a single, knowledge‐only, control discussion. Outcomes & Results: There were no significant differences for the primary outcome measure of carer anxiety and depression as well as carer quality of life and general self‐efficacy. Statistically significant results suggested carers receiving the Talking Sense intervention had fewer communication difficulties happening (p = 0.046) and felt more valued by their relatives (p = 0.046). A score close to significance (p = 0.052) suggested they perceived their relatives to be more communicatively competent. Conclusions & Implications: The intervention and research design were shown to be effective with low attrition and high adherence to treatment. A non‐significant finding for the primary outcome measure does not support the potential for this intervention to effect carer anxiety and depression. The potential for perceived change in the person with dementia, with statistically fewer communication difficulties happening and the carer feeling more valued by their relative, was the most significant finding from this programme of research. Recommendations for further research are made.
Introduction: Stroke causes disability that affects the life of patients, their relatives and the society in general. Global healthcare policies, suggest the sooner possible discharge of stroke patients from hospitals, but the transition to home is a stressful experience for family caregivers who are suddenly faced with the responsibility of homecare provision. Sufficient international evidence suggest that a pre-discharge educational program for preparing family caregivers could lead to better care, less complications and better quality of life, but Cyprus still do not provide such a program. Objectives: To challenge the current healthcare practices regarding the care of elderly patients with stroke and to propose an innovative training program that will be provided by the nurses during the pre-discharge period to family caregivers. Methodology: The proposed innovation is discussed around an overview of the international literature regarding the family caregivers' education in the improvement reforms that are being pursued with the new national health system of Cyprus. Additionally, it is suggested that the Ministry of Health should create discharge services of elderly stroke patients in each hospital with the creation of a Discharge Coordinator role, who could coordinate the proposed innovation, while he/she could also inform staff on how to provide the training program to family caregivers.discharge planning and the Lewin's change theory, since the development and implementation of the innovation as a whole is based on this theory. Results: International literature highlights that family caregivers have a diversity of responsibilities at home but also unmet training needs. If these needs are not met, they may cause burden to caregivers, thus impeding their capacity to provide safe homecare to patients. Considering the significance of post-discharge homecare to the elderly patients with stroke, a proposed training program was designed for family caregivers, in an effort to motivate nurses in Cyprus to provide this preparation. Conclusions and recommendations: An attempt should be made as for the proposed innovation to be included in the future planning of the care of stroke patients as part of the improvement reforms that are being pursued with the new national health system of Cyprus. Additionally, it is suggested that the Ministry of Health should create discharge services of elderly stroke patients in each hospital with the creation of a Discharge Coordinator role, who could coordinate the proposed innovation, while he/she could also inform staff on how to provide the training program to family caregivers.
Purpose: This review aims to determine the effectiveness of mindfulness‐based interventions (MBIs) and educational interventions (EIs) as supportive care for family caregivers (FCs) of patients with cancer. Design and Methods: Review was conducted following PRISMA guidelines. The search protocol was performed using EBSCO, Google Scholar, and Science Direct for the studies published between 2007 and 2017. Findings: Little evidence is available on the usefulness of MBIs among FCs of patients with cancer. However, the available evidence supports that MBIs have the potential to enhance overall well‐being and reduce the burden for FCs. EIs have shown positive outcomes on some aspects of well‐being and reducing the burden. Practice Implications: The findings provide preliminary support for effectiveness of MBIs and EIs as a supportive care for FCs.
This article is part of 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 given the information they need to manage the complex care regimens of 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 health care at home.The articles in this new installment of the series explain principles for promoting safe mobility that nurses should reinforce with family caregivers. Each article also includes an informational tear sheet-Information for Family Caregivers-that contains links to instructional videos. To use this series, nurses should read the article first, so they understand how best to help family caregivers, and then encourage the caregivers to watch the videos and ask questions. For additional information, see Resources for Nurses.
Protein-energy malnutrition is common amongst people aged 65 years and older, has a multifactorial aetiology, and numerous negative outcomes. Domiciliary carers (non-clinical paid carers) and family carers (including family, friends and neighbours) are required to support the increasing demand for in-home assistance with activities of daily living due to the ageing population. This review provides insight into the role of both domiciliary and family carers in providing individualised nutrition support for older, community-dwelling adults with malnutrition. Four electronic databases were searched for intervention studies from database inception to December 2016. Both domiciliary and family carers are well placed to monitor the dietary intake and nutritional status of older adults; to assist with many food-related tasks such as the sourcing and preparation of meals, and assisting with feeding when necessary; and to act as a conduit between the care recipient and formal nutrition professionals such as dietitians. There is moderate evidence to support the role of domiciliary carers in implementing nutrition screening and referral pathways, and emerging evidence suggests they may have a role in malnutrition interventions when supported by health professionals. Moderate evidence also supports the engagement of family carers as part of the nutrition care team for older adults with malnutrition. Interventions such as group education, skill-development workshops and telehealth demonstrate promise and have significantly improved outcomes in older adults with dementia. Further interventional and translational research is required to demonstrate the efficacy of engaging with domiciliary and family carers of older adults in the general community.; Copyright © 2017 Elsevier B.V. All rights reserved.
Background: The carer-delivered individual cognitive stimulation therapy (iCST) was developed to improve cognition and quality of life of people with dementia. This study aims to explore people with dementia and family carers' concepts of mental stimulation and experiences of participating in the iCST intervention.; Methods: A sub-sample of 23 dyads of people with dementia and their family carers who completed the iCST intervention took part in semi-structured in-depth interviews. Data were analysed using framework analysis.; Results: Three main themes emerged, 'Concepts of mental stimulation', 'Experiencing changes in everyday life as a result of participating in iCST' and 'Carer adherence to the intervention' along with 10 sub-themes. The overall experience of participating in iCST was described as having opportunities to engage in enjoyable mentally stimulating activities, motivation to stay active and bringing people with dementia and their carers 'together'. Family carers mentioned that finding time to do the sessions and their relatives being reluctant to engage in the activities could hinder their participation in the intervention.; Conclusions: People with dementia and their family carers found iCST stimulating and enjoyable, but many had difficulty delivering all the sessions as planned. Family carers suggested that providing extra support by involving other people in delivering the intervention may help to improve adherence to the intervention. iCST may be a useful tool to encourage people with dementia and their carers to communicate. Copyright © 2017 John Wiley & Sons, Ltd.; Copyright © 2017 John Wiley & Sons, Ltd.
This article is part of 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 given the information they need to manage the complex care regimens of 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 health care at home.The articles in this new installment of the series provide simple and useful instructions that nurses should reinforce with family caregivers who perform wound care tasks. Each article also includes an informational tear sheet-Information for Family Caregivers-that contains links to instructional videos. To use this series, nurses should read the article first, so they understand how best to help family caregivers, and then encourage caregivers to watch the videos and ask questions. For additional information, see Resources for Nurses.
This article is part of 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 given the information they need to manage the complex care regimens of 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 health care at home.The articles in this new installment of the series provide simple and useful instructions that nurses should reinforce with family caregivers who perform wound care tasks. Each article also includes an informational tear sheet-Information for Family Caregivers-that contains links to instructional videos. To use this series, nurses should read the article first, so they understand how best to help family caregivers, and then encourage caregivers to watch the videos and ask questions. For additional information, see Resources for Nurses.
Dementia-related behavioral symptoms are challenging clinical features occurring across etiologies and disease progression. They are associated with increased healthcare utilization, nursing home placement, family upset and burden. Families typically manage behavioral symptoms without requisite knowledge, skills and guidance. We designed WeCareAdvisor™ as an easy-to-use, evidence-informed web-based platform. It provides families knowledge about dementia, daily tips, and a systematic approach to describe behaviors, investigate modifiable contributors, create treatment plans (WeCareAdvisor™ Prescription) consisting of management tips tailored to symptom presentation, and evaluate effectiveness. WeCareAdvisor™ is being tested in a randomized trial to assess acceptability, usability and immediate impact on caregiver confidence managing and upset with behavioral symptoms, and secondarily, frequency of behavioral occurrences. Fifty-seven caregivers will be enrolled from communities and medical clinics at two sites (University of Michigan; Johns Hopkins University). Families reporting behavioral symptoms in a telephone screen are consented and interviewed at home. Following the interview, an envelope is opened by interviewers to reveal group assignment (immediate vs one-month delayed treatment group). Those receiving WeCareAdvisor™ immediately are provided an iPad and instruction in its use; those in the delayed treatment group are informed of next study steps. All caregivers are reassessed at home one month from baseline. The delayed treatment group then receives iPad instructions and are re-interviewed one month thereafter. During treatment phase, participants receive 3 weekly check-in calls to encourage tool use and troubleshoot. Key outcomes include number of times using WeCareAdvisor™ and for which behaviors, self-efficacy and upset managing behavioral symptoms, and frequency of behavioral occurrences. Clinical trial registration #: NCT02420535.; Copyright © 2017 Elsevier Inc. All rights reserved.
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.
Objectives: The Chronic Disease Self-Management Program (CDSMP) was developed to advance participants' self-care of chronic illness and may be offered to both individuals with chronic conditions and their caregivers. Previous studies of CDSMP have identified multiple resulting health benefits for participants as well as factors associated with participants' completion rates. This study investigated differences on these issues between caregiving and non-caregiving participants.; Study Design: Secondary analysis using regression analysis to predict the outcome.; Methods: Baseline data were collected directly from adult (over 18 years) participants of CDSMP workshops in New York State from 2012 to 2015 (n = 2685). Multi-level logistic regression analysis was used to compare the difference on completion of workshops (attended four or more of sessions) and contributing factors with the independent variable of whether participants provided care/assistance to a family member or friends with long-term illness or disability. Additional individual-level variables controlled for in the model were age, gender, race/ethnicity, living arrangement, education, the number of chronic conditions and disabilities; as were workshop-level characteristics of class size, language used, workshop leader experience, location urbanity and delivery site type.; Results: Participants who provided care to family or friends were 28% more likely to complete the workshop compared with those who did not (odds ratio = 1.279, P < 0.05). Different factors influenced the completion of CDSMP workshop for caregivers and non-caregivers.; Conclusions: People who provide care to others appeared to have stronger motivation to complete the workshops with greater benefits. Agencies offering CDSMP should encourage caregivers to attend.; Copyright © 2017. Published by Elsevier Ltd.
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
This article is the second in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The second video can be accessed at http://links.lww.com/AJN/A75
This article is part of 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 given the information they need to manage the complex care regimens of 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 health care at home.The articles in this new installment of the series explain principles for promoting safe mobility that nurses should reinforce with family caregivers. Each article also includes an informational tear sheet-Information for Family Caregivers-that contains links to instructional videos. To use this series, nurses should read the article first, so they understand how best to help family caregivers, and then encourage the caregivers to watch the videos and ask questions. For additional information, see Resources for Nurses
This article is the third in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The third video can be accessed at http://links.lww.com/AJN/A76
This article is the fourth in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The fourth video can be accessed at http://links.lww.com/AJN/A78 .
This article is the first in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The first video can be accessed at http://links.lww.com/AJN/A74.
Introduction: Breathlessness is a common symptom of advanced disease placing a huge burden on patients, health systems and informal carers (families and friends providing daily help and support). It causes distress and isolation. Carers provide complex personal, practical and emotional support yet often feel ill-prepared to care. They lack knowledge and confidence in their caring role. The need to educate carers and families about breathlessness is established, yet we lack robustly developed carer-targeted educational interventions to meet their needs.; Methods: We conducted a qualitative interview study with twenty five purposively-sampled patient-carer dyads living with breathlessness in advanced disease (half living with advanced cancer and half with advanced chronic obstructive pulmonary disease (COPD). We sought to identify carers' educational needs (including what they wanted to learn about) and explore differences by diagnostic group in order to inform an educational intervention for carers of patients with breathlessness in advanced disease.; Results: There was a strong desire among carers for an educational intervention on breathlessness. Six key topics emerged as salient for them: 1) understanding breathlessness, 2) managing anxiety, panic and breathlessness, 3) managing infections, 4) keeping active, 5) living positively and 6) knowing what to expect in the future. A cross-cutting theme was relationship management: there were tensions within dyads resulting from mismatched expectations related to most topics. Carers felt that knowledge-gains would not only help them to support the patient better, but also help them to manage their own frustrations, anxieties, and quality of life. Different drivers for education need were identified by diagnostic group, possibly related to differences in caring role duration and resulting impacts.; Conclusion: Meeting the educational needs of carers requires robustly developed and evaluated interventions. This study provides the evidence-base for the content of an educational intervention for carers of patients with breathlessness in advanced disease.
Background: Cognitive stimulation therapy (CST) is a well-established group psychosocial intervention for people with dementia. There is evidence that home-based programmes of cognitive stimulation delivered by family caregivers may benefit both the person and the caregiver. However, no previous studies have evaluated caregiver-delivered CST. This study aimed to evaluate the effectiveness of a home-based, caregiver-led individual cognitive stimulation therapy (iCST) program in (i) improving cognition and quality of life (QoL) for the person with dementia and (ii) mental and physical health (well-being) for the caregiver. Methods and Findings: A single-blind, pragmatic randomised controlled trial (RCT) was conducted at eight study sites across the United Kingdom. The intervention and blinded assessment of outcomes were conducted in participants' homes. Three hundred fifty-six people with mild to moderate dementia and their caregivers were recruited from memory services and community mental health teams (CMHTs). Participants were randomly assigned to iCST (75, 30-min sessions) or treatment as usual (TAU) control over 25 wk. iCST sessions consisted of themed activities designed to be mentally stimulating and enjoyable. Caregivers delivering iCST received training and support from an unblind researcher. Primary outcomes were cognition (Alzheimer's Disease Assessment Scale-cognitive [ADAS-Cog]) and self-reported QoL (Quality of Life Alzheimer's Disease [QoL-AD]) for the person with dementia and general health status (Short Form-12 health survey [SF-12]) for the caregiver. Secondary outcomes included quality of the caregiving relationship from the perspectives of the person and of the caregiver (Quality of the Carer Patient Relationship Scale) and health-related QoL (European Quality of Life-5 Dimensions [EQ-5D]) for the caregiver. Intention to treat (ITT) analyses were conducted. At the post-test (26 wk), there were no differences between the iCST and TAU groups in the outcomes of cognition (mean difference [MD] = -0.55, 95% CI -2.00-0.90; p = 0.45) and self-reported QoL (MD = -0.02, 95% CI -1.22-0.82; p = 0.97) for people with dementia, or caregivers' general health status (MD = 0.13, 95% CI -1.65-1.91; p = 0.89). However, people with dementia receiving iCST rated the relationship with their caregiver more positively (MD = 1.77, 95% CI 0.26-3.28; p = 0.02), and iCST improved QoL for caregivers (EQ-5D, MD = 0.06, 95% CI 0.02-0.10; p = 0.01). Forty percent (72/180) of dyads allocated to iCST completed at least two sessions per week, with 22% (39/180) completing no sessions at all. Study limitations include low adherence to the intervention. Conclusions: There was no evidence that iCST has an effect on cognition or QoL for people with dementia. However, participating in iCST appeared to enhance the quality of the caregiving relationship and caregivers' QoL. Trial Registration: The iCST trial is registered with the ISRCTN registry (identified ISRCTN 65945963, URL: DOI 10.1186/ISRCTN65945963)
Psycho education to family members has been emerged as an important prerequisite to modern psychiatric treatment and rehabilitation, since through psycho education many problematic areas related to patient care and compliance with the treatment can be successfully addressed. Being an indispensable adjunct to modern psychiatric treatment it is more efficacious in targeting all areas of patient's illness and functionality quite suitably than any single therapy based approach. Effects of bipolar disorder can be far-reaching, both into the lives of patients and those around them. Severe cognitive, emotional and behavioural dysfunctioning related to illness lead to burden, expressed emotion, life stress, avoidance coping, decreased quality of life and lesser social support in family members of patients because of their inability in understanding the meaning of psychiatric and neurological symptoms. Primary caregiver plays multiple role in care of the ill persons, not only they take day-to-day care of the patient, supervise medications, take the patient to the hospital and look after the financial needs but also they have to bear with the behavioral disturbances in the patient. Experiencing considerable stress and burden they might develop an unhealthy coping style which may adversely affect the caregiving function and their own health. Interventions techniques have proven efficacy in reducing relapse rates and negative impact of symptoms on caregivers and can diminish negative attitudes and increase the willingness in the caregivers in providing care to patients. Through intervention caregivers are imparted knowledge about illness, its course, etiology, warning signs and various ways of managing the patient during distress and dysfunctioning. Psychoeducational training is a way of offering help for caregivers, representing a forum for knowledge sharing, and in which the primary focus is on psychological themes aimed at carers developing coping skills and strategies. It helps caregivers to become skilled in closer monitoring of disease treatment and symptoms which can have major implication in the evolution of the disease over the long term. The goals of these efforts are educational, prevention and to promote psychological health among caregivers as well as the patients.
Norman Lamb, Minister of State for Care and Support at the Department of Health invited the Chair of Skills for Care to undertake this Independent Review, in the context of the changes to social work practice brought about by the Social Work Task Force and Social Work Reform Board, and their own recommendations for social work education. The review is based on evidence invited from as wide a field as possible, from the UK and internationally, of all those who have a stake in the education of social workers, including service users and carers, employers, educationalists, social work practitioners, students and others. Professor David Croisdale-Appleby considers whether social work education is ideally structured to best serve the changing nature of the profession.
As a part of the national carers' strategy, the Department of Health commissioned six pilot workshops spread across England for General Practitioners (GPs) and other primary healthcare workers. The six workshops were held during September and October 2009, arranged by the Royal College of General Practitioners and planned in consultation with the Princess Royal Trust for Carers. The workshops were delivered by one of two GPs and by a carer. The Department of Health commissioned an evaluation of the workshop programme. This paper reports on the attitudes towards and knowledge of carers by GPs and other primary care workers, such as community matrons, practice nurses, healthcare assistants, practice managers and receptionists. It also tracks changes over time from the questionnaire responses pre- and post-workshop and 3 months later in the GPs' and other primary care workers' response to carers. Prior to the workshops, GPs and other primary care workers saw primary care as having a significant role in directly assisting carers, especially with emotional support and in signposting to other services. However, there was a lack of knowledge about issues facing carers, limited confidence in assisting carers and few services within the primary care teams directly focussed on carers. The workshops were regarded positively by those who attended, and the evaluation found that there was a positive impact with GPs and other primary care workers reporting specific actions they had taken post-workshop to assist carers, greater confidence and awareness in working with carers, and increased knowledge about carers. The paper concludes by recommending how the pilot programme might be rolled out more widely.
The article reviews the report "National Mental Health Development Unit 2010" highlighting the importance of involving carers particularly in crisis resolution and home treatment teams (CRHT), in managing medicines during a mental health crisis. The authors note the report's recommendation of developing training packages to help carers understand issues and enhance their understanding of mental health conditions and treatment options. They also recommend investigating the needs of young carers.
This practical guide for organisations seeking to deliver training programmes to carers has been developed using learning from the National Evaluation of the Caring with Confidence (CwC) programme1 . The CwC programme ran from 2008 to 2010 and involved a large number of organisations in the UK delivering a seven-module training course to carers in their localities. CwC was designed to help carers develop a range of skills relevant to their caring roles, including: practical matters (such as safe lifting techniques and administering medicines); everyday life tasks (such as managing money and domestic responsibilities); and being able to have ‘a life of their own’. The programme also aimed to help carers become more confident in their caring roles, particularly in relation to seeking formal support and exploring recreational / employment opportunities. While delivering the programme, providers experienced a number of challenges, which were often met with creative solutions. This guide provides other organisations seeking to offer carer training with ideas about how to deliver it successfully, based on what providers found particularly effective. It covers the following issues: planning the training; sources of funding and financial planning; monitoring access; recruiting carers; course materials; delivery methods; practical considerations; and future planning.
Background: The concerns of older carers of an adult with disabilities have been well documented. The sudden incapacity or death of the carer can result in a crisis response rather than a planned transition to a chosen sustainable alternative care arrangement for the person with disability. Building on previous ‘Futures Planning’ projects, the aim of this project was to enrich the lives of people with disabilities and their carers whilst ensuring that their wishes for the future are documented to provide security.
Materials and Methods: This article reports on information sessions and workshops that were held for people with disabilities, their carers and staff, and the training sessions for staff for this project.
Results: The sessions underlined the fact that people with disabilities want to enjoy the same experiences that most other people enjoy. Drawing on the ideas and suggestions from participants, the ‘Futures Planning’ documents were modified to meet the aims of the Quality Living project, making them suitable for planning for quality living for the carer and the person with a disability for the next 10 years.
Conclusions: Findings supported the concept that planning allows people with disabilities and their carers to take steps to achieve their dreams.
Stroke is common and disabling. Most stroke patients are cared for at home by informal carers. This study of informal carers of stroke patients measured service provision and satisfaction with different aspects of community care received by these carers. Dissatisfaction was expressed with training and information provision for carers, communication between carers and community services, speed of response and coordination of community services, and perceived support. Problems of information provision were most marked for those patients with most disability and/or older carers.
Carers have an enormous amount of responsibility for the welfare and management of people with a mental illness in Britain, and many require help if they are to continue caring. Mental health nurses may be in a key position to offer support, but they are often unclear of what is required and how it should be delivered. Existing UK nurse-led psychosocial interventions for families often focus on the needs of the patient rather than the carer. This article describes a needs-led support service that has been designed for carers whose relatives are diagnosed with schizophrenia. It recognizes the importance of a collaborative partnership between carers and nurses. In 2000, 10 mental health nurses were trained to deliver this support to carers. An evaluation is currently underway. This article outlines the principles of the training programme and how it might enable nurses to meet the carers' needs.
This toolkit provides links to a range of resources to support GP practices and health professionals in ensuring patients nearing the end of life, and those close to them, receive the highest quality of care and support. It includes tools, guidance, current best practice policy, and legislation for healthcare professionals. It also provides links to training resources to help with continuing professional development and audit tools to evaluate practice. A section providing information for patients, informal carers, and those close to someone nearing the end of life is also included. Developed in partnership with Marie Curie and the Clinical Innovation and Research Centre, the toolkit will be updated on a regular basis.
Carers can have a significant impact supporting people with intellectual disabilities to make healthy lifestyle choices. This study examines carers' training needs on diet and physical activity. A cross-sectional survey was undertaken of the knowledge and perceptions of carers supporting adults with intellectual disabilities. An interviewer administered questionnaire was used to examine carer knowledge of public health recommendations on diet and physical activity; perceptions of the benefits of healthy diets and physical activity levels; and the carer views on the barriers to change experienced by individuals with intellectual disabilities. Sixty-three carers took part in the study. They generally had a low level of knowledge around public health recommendations on diet and physical activity. Greater importance was attributed to the health benefits of diet than physical activity. Carers rated intrapersonal barriers to change within the person with intellectual disabilities as more important, than interpersonal or external barriers to change, with significant differences in perceived barriers relevant to diet and physical activity. Carers supporting adults with intellectual disabilities have significant training needs relevant to promoting healthy lifestyles. This highlights the opportunity to promote health improvement via the development, and provision, of effective training initiatives.
The number of carers in the community is rising, and the importance of general practice in providing supportfor them has been highlighted. Caring for a disabled friend or relative has been shown to be harmful to the health of the caregiver and changes in social and family structure have led carers to become isolated and more reliant on the formal support services. However, many carersfeel that GPs do not understand their needs, and in turn many GPs and nursesfeel that they lack the relevant resources and training to take a more proactive role. The shift from hospital to community-based care and the blurring of social roles of responsibility puts additional pressure on the carers and community services. However general practice is in the best position to help and there are many things that can be done by primary care teams, such as providing information about available support, benefits and local services, which would be appreciated by informal carers.
Objectives: To evaluate the impact of a combination of caregiver support group and memory training/music therapy in dementia patients on behavioural and psychological symptoms (BPSD) and caregiver burden compared to a control group.
Method: Eighteen patient-carer-dyads in the treatment group and 18 patient-carer-dyads as controls were studied in the setting of a memory clinic of a psychiatric university hospital over a period of 2 years. Controls were matched for age, gender, diagnosis, dementia severity, living arrangement and medication. The interventions were conducted once per week for 1 hour run by a clinical psychogeriatric team. Outcome measures were patients' cognitive and functional status as well as BPSD and caregivers subjective burden and depression measured by validated scales. Data were obtained 6, 12 and 24 months after baseline.
Results: There were no significant differences between the intervention and control group neither after 6, 12 nor after 24 months treatment.
Conclusions: The lack of a positive impact in alleviating caregiver burden or BPSD after intensive psychological interventions may result from extensive care in the routine clinical management including individual counselling for patients and families. The effect of ‘treatment as usual’ needs to be taken into account when comparing an intervention and control group, as well as the dosage of the intervention. Copyright © 2004 John Wiley & Sons, Ltd.
This bulletin provides a picture of the wellbeing of people who received care and support, and carers who received support in the last 12 months, and where possible, provides a comparison to the rest of the respondents in the survey (those that had not received any care and support services). Due to the small number of respondents receiving help from care and support services, results are published at a Wales level only.
Summarises findings from the 2014-15 National Survey for Wales and responses to questions designed to measure the personal well-being of people who need care and support and carers who need support. Respondents were shown a list of services offered by care and support services in Wales and were asked whether they had received any help from these services in the last 12 months. 9 per cent of all respondents had received care and support for themselves) or had received help to care for or arrange care for another person.
Original document (pdf) on Welsh Government website.
Often the needs of carers of people with dual diagnosis are ignored when they too may be doubly isolated and unsupported. Reports on a pilot two-day training workshop for carers in Camden and Islington Mental Health and Social Care NHS Trust, based on training provided for the trust's community and inpatient mental health staff. Discusses what both staff and carers found useful about the workshops.
The aim of this revised guidance is to assist councils with adult social services responsibilities to determine eligibility for adult social care, in a way that is fair, transparent and consistent, accounting for the needs of their local community as a whole as well as individuals’ need for support. It replaces Fair Access to Care Services: guidance on eligibility criteria for adult social care which was issued in 2003, and has been written in the light of recommendations made in the Commission for Social Care Inspection’s review Cutting the Cake Fairly. This revised guidance aims to set social care eligibility criteria within the context of both the new direction of policy established by Putting People First, and more generally within a broader theme of public service reform. Priorities for this reform include greater choice and control, better access to public services and information, empowerment of people using services and their carers at local level and the definition of user satisfaction as a key measure of success.
Heart failure has a comparable prognosis to many cancers and accounts for approximately 4% of deaths in the UK. Despite its poor prognosis, few patients have access to specialist palliative care services. The National Institute for Health and Clinical Excellence (NICE) acknowledges that the palliative care needs of patients with heart failure and their informal carers are not currently being met. Its recently published guidance recommends the development of an effective multidisciplinary service model for such patients.
Background: Health care discourse is replete with references to building partnerships between formal and informal care systems of support, particularly in community and home based health care. Little work has been done to examine the relationship between home health care workers and family caregivers of older clients. The purpose of this study is to examine home support workers’ (HSWs) perceptions of their interactions with their clients’ family members. The goal of this research is to improve client care and better connect formal and informal care systems.
Methods: A qualitative study, using in-depth interviews was conducted with 118 home support workers in British Columbia, Canada. Framework analysis was used and a number of strategies were employed to ensure rigor including: memo writing and analysis meetings. Interviews were transcribed verbatim and sent to a professional transcription agency. Nvivo 10 software was used to manage the data.
Results: Interactions between HSWs and family members are characterized in terms both of complementary labour (family members providing informational and instrumental support to HSWs), and disrupted labour (family members creating emotion work and additional instrumental work for HSWs). Two factors, the care plan and empathic awareness, further impact the relationship between HSWs and family caregivers.
Conclusions: HSWs and family members work to support one another instrumentally and emotionally through interdependent interactions and empathic awareness. Organizational Care Plans that are too rigid or limited in their scope are key factors constraining interactions.
This multi-municipal intervention study explored whether informal carers of frail older people and disabled children living at home made use of information and communication technology (ICT) to gain knowledge about caring and to form informal support networks, thereby improving their health. Seventy-nine informal carers accessed web-based information about caring and an e-based discussion forum via their personal computers. They were able to maintain contact with each other using a web camera and via normal group meetings. After the first 12 months, 17 informal carers participated in focus group interviews and completed a short questionnaire. Four staff members were also interviewed. Participant carers who had prior experiences with a similar ICT-based support network reported greater satisfaction and more extensive use of the network than did participants with no such prior experience. It seems that infrequent usage of the service may be explained by too few other carers to identify with and inappropriate recruitment procedures. Nevertheless, carers of disabled children reported that the intervention had resulted in improved services across the participant municipalities. To achieve optimal effects of an ICT-based support network due attention must be given to recruitment processes and social environment building for which care practitioners require training and support.
The value of care provided by informal carers in Canada is estimated at $26 billion annually (Hollander et al., 2009). However, carers’ needs are often overlooked, limiting their capacity to provide care. Problem-solving therapy (PST), a structured approach to problem solving (PS) and a core principle of the Reitman Centre CARERS Program, has been shown to alleviate emotional distress and improve carers’ competence (Chiu et al., 2013). This study evaluated the effectiveness of problem-solving techniques-based intervention based on adapted PST methods, in enhancing carers’ physical and emotional capacity to care for relatives with dementia living in the community.
56 carers were equally allocated to a problem-solving techniques-based intervention group or a control arm. Carers in the intervention group received three 1 hr visits by a care coordinator (CC) who had been given advanced training in PS techniques-based intervention. Coping, mastery, competence, burden, and perceived stress of the carers were evaluated at baseline and post-intervention using standardized assessment tools. An intention-to-treat analysis utilizing repeated measures ANOVA was performed on the data.
Post-intervention measures completion rate was 82% and 92% for the intervention and control groups, respectively. Carers in the intervention group showed significantly improved task-oriented coping, mastery, and competence and significantly reduced emotion-oriented coping, burden and stress (p < 0.01–0.001). Control carers showed no change.
PS techniques, when learned and delivered by CCs as a tool to coach carers in their day-to-day caregiving, improves carers’ caregiving competence, coping, burden, and perceived stress. This may reduce dependence on primary, psychiatric, and institutional care. Results provide evidence that establishing effective partnerships between inter-professional clinicians in academic clinical health science centers, and community agencies can extend the reach of the expertise of specialized health care institutions.
Guide giving information about services for disabled people available from government departments and agencies, the NHS, local government, and voluntary organisations. Covers every need, including housing, money, opportunities for holidays and leisure, and many more. Includes phone numbers, publications and a list of organisations.
The facts about the growing number of people with dementia in the UK and the associated costs are firmly established. It is well known that dementia is a significant and growing driver of demand for health and social care. The cost of dementia in the UK in 2010 was estimated to be £20 billion and this is expected to grow to over £27 billion by 2018. It is also clear that health and social care budgets are under extreme pressure and there is an urgent need to improve the cost-effectiveness of services. Given the high financial costs of dementia and the human cost of failing to provide good quality support, commissioners and planners will miss a vital opportunity if they do not treat dementia as a priority area for improving cost-effectiveness. The APPG believes there is ample opportunity for using resources more effectively while at the same time improving outcomes for people with dementia. The evidence in this report demonstrates that many areas have been able to not only achieve better outcomes for people with dementia but also to achieve greater value for money in dementia care, by making changes to service provision or adopting new ways of working. Many of the examples focus on earlier intervention to prevent crises or delay the need for more intensive types of support. Witnesses were also clear that integrated models of care are necessary. Professionals from across health and social care need to work closely and co-ordinate services to improve the efficiency and quality of dementia services. These findings should be incorporated within the current health and social care reforms, for example, by ensuring resources are focused on prevention and that commissioning is informed by a wide range of views. The APPG on Dementia considers that there is considerable potential to increase the cost-effectiveness of dementia services, while at the same time improving outcomes for people with dementia. We urge health and social care planners and providers to consider what they can do differently to achieve these ends. Given the considerable burden of dementia, improving the cost-effectiveness of dementia care could make a significant impact on the overall health and social care budget.
This new Strategic Action Plan has been developed in response to what people with autism, their families and carers have said is important to them. We have also worked with a wide range of stakeholders to identify some key priority themes and actions that will make a real difference to the lives of children and adults with autism. The Plan sets out what we have done, what we were told and what we will do. It has three key priority areas: Awareness raising, information and training; Assessment and diagnosis; and Meeting support needs.
This study evaluates whether a short training workshop in communication techniques is more effective than an information booklet for improving communication skills in informal carers of people suffering from dementia. 30 informal carers were allocated to the workshop sessions and 15 to the booklet. Outcome measures included awareness of communication strategies; perceived frequency of communication breakdown at home, and the associated level of distress; general stress; and consumer satisfaction. At six week follow-up, the workshop group demonstrated a significantly greater awareness of communication strategies then the booklet-only group. Both groups reported some reduction in the frequency of communication problems at home, and a reduction in the associated level of distress. Satisfaction with the workshop indicated that training was helpful but depended on the stage of illness of the partner.
Background Training care givers reduces their burden and improves psychosocial outcomes in care givers and patients at one year. However, the cost effectiveness of this approach has not been investigated. Objective To evaluate the cost effectiveness of caregiver training by examining health and social care costs, informal care costs, and quality adjusted life years in care givers. Design A single, blind, randomised controlled trial. Setting Stroke rehabilitation unit. Subjects 300 stroke patients and their care givers. Interventions Caregiver training in basic nursing and facilitation of personal care techniques compared with no caregiver training. Main outcome measures Health and social care costs, informal care costs, and quality adjusted life years in care givers over one year after stroke. Results Total health and social care costs over one year for patients whose care givers received training were significantly lower (mean difference -£4043 ($7249; €, 95% confidence interval -£6544 to -£1595). Inclusion of informal care costs, which were similar between the two groups, did not alter this conclusion. The cost difference was largely due to differences in length of hospital stay. The EQ-5D did not detect changes in quality adjusted life years in care givers. Conclusion Compared with no training, caregiver training during rehabilitation of patients reduced costs of care while improving overall quality of life in care givers at one year.
Meeting family carers who recount their experiences of being on the receiving end of health and social care provides a 'real life' context in which undergraduate students from different professions can explore together and learn about interprofessional care and teamwork. This paper draws on data from a three-month in-depth evaluation of palliative care workshops in which medical, nursing, social work and rehabilitation therapy students interview family carers who are caring for someone with a terminal illness or who have recently been bereaved. The evaluation showed that students responded positively to 'real world' learning and coped well when carers were upset or recounted distressing incidents. Meeting the carer had a profound impact on the students- to the extent that some said they were 'changed' by the experience and felt it would significantly influence their professional behaviour. Hearing the carer's story also allowed them to pinpoint new and significant insights into their own profession and into healthcare provision generally. Family carers' views of their experience of the workshops were also sought and they too reported benefits from meeting the students. They found the experience cathartic and therapeutic and were both surprised and impressed by the maturity of the students who were able to respond to their distress. The paper also discusses the practicalities involved in recruiting the carers, issues of preparation and debriefing and lessons which will be useful to others who may wish to involve family carers in education.
This paper will inform mental health service users and carers on how a University in Wales established a service user and carer-led research group. * The group's primary aim will be to undertake its own service user and carer-led research projects. * Mental health service users have undergone empowerment and research training at a University in Wales. This is an important initiative because it is the first service user and carer-led research group in Wales. * This paper is co-authored by a mental health service user and includes transcripts of service users' stories written in their words. Abstract Service user and carer involvement in research has been gaining momentum in recent years. However, this involvement to date has primarily been as research respondents or 'subjects' in research studies. A group of mental health service users at a University in Wales underwent empowerment and research training to enable them to become active participants in the research process; this training was a necessary step to equip mental health service users with the skills to become independent researchers and to carry out service user-led research. We included transcripts from mental health service users on their views of the empowerment and research training received. We are not reporting, in this paper, on the findings from a research study rather it aims to inform readers how a service user and carer-led research group has been established in Wales. The group has two purposes: (1) to train service users in research methodologies, and thus for them to gain essential research skills; and (2) to undertake their own service user and carer-led research projects thereby implementing the research skills they have acquired from the training. The latter is a primary aim of the group; a future paper will report on its development.
The caregiving literature provides compelling evidence that caregiving burden and depressive symptoms are linked with stressful care relationships, however, relational difficulties around caregiving are seldom described in the literature. This article presents findings from content analysis of baseline interviews with 40 Alzheimer’s disease (AD) and Parkinson’s disease (PD) spousal caregivers enrolled in a home care skill-training trial who identified their care relationship as a source of care burden. Disappointment and sadness about the loss of the relationship; tension within the relationship; and care decision conflicts within the relationship were recurrent themes of relational stress in caregiving. These spousal caregivers had relationship quality scores below the mean and burden and depressive symptom scores above the means of other caregivers in the study. These findings provide support for developing dyadic interventions that help spouses manage relational losses, care-related tensions, and care decision-making conflicts.
This review explores some of the key issues relevant to children and adults who have dysphagia, or eating, drinking and swallowing difficulties, and a learning disability. It explores the methods for attempting to identify this area of difficulty effectively, and reflects on some of the other issues that may affect management, such as carer support and training and use of appropriate communication strategies to support and enable participation from the client with learning disability.
Objective: To test the feasibility (for a potential randomised controlled trial) of a computer intervention for improving social interaction and promoting the mental health of rural carers.
Design: The study combined pre- and post-intervention measures with interviews to determine the feasibility of the intervention and the acceptability of the study design to participants. The intervention consisted of providing 14 rural carers with computers and a 4-week training program on basic computer skills, using email and the Internet.
Setting: The study was conducted in a rural community setting.
Participants: The carers were 12 women and two men, aged from 50 to 81 years, with an average of 65.5 years.
Main outcome measures: Measures of social isolation (UCLA Loneliness Scale), depression (Geriatric Depression Scale), carer burden (Zarit Burden Interview) and computer confidence were taken at baseline and at a 3-month follow-up. Interviews were completed at follow-up to discuss outcomes of the study. A focus group discussion was conducted with 11 participants to discuss the study and resolve computer issues.
Results: Most carers reported increased confidence in email and Internet use. There was improvement for most participants in depressive symptoms and social isolation, but little change in carer burden. Participants identified many social benefits associated with the computer intervention, such as intergenerational connection, community building, skills and confidence and preparation for the future.
Conclusion: The intervention was found to be practical and acceptable for a group of older carers. It was concluded that it would be feasible to conduct a large randomised controlled trial of the intervention.
Families are the bedrock of long-term care, but policymakers have traditionally considered them “informal” caregivers, as they are not part of the formal paid caregiving workforce. As chronic and long-term care systems have become more complex and as more demanding tasks have been shifted to families, this view is no longer sustainable. The care transition process offers a critical opportunity to treat family caregivers as important care partners. Enhancing their involvement, training, and support will contribute to reducing unnecessary rehospitalizations and improving patient outcomes. The contributions and experiences of family caregivers should be considered in gathering information to shape policies and practice; training health care professionals; developing programs; and reforming financing.
This strategy sets the government agenda for supporting carers over the next 10 years ranging across the span of government’s responsibilities. Short-term changes are to be implemented over the next three years, and longer-term priorities are identified for the next 10 years. The strategy addresses breaks, personalisation of services, income, information and advice, the workplace, training for the workforce, access to employment, emotional support, the health of carers and the specific needs of young carers. . The strategy is based on the views and concerns of carers themselves, drawn from consultation across the country.
Service users, carers and academics describe participation in the social work degree at Kingston University and St George's University London. It looks at the different ways that users and carers are involved in the course, including teaching, role-playing activities, marking students' work and the selection process for students applying to on the course. It also looks at the importance of the university providing appropriate training and support, the benefits students get from contact with users and carers and what users and carers gain from the experience. The film will be of interest to social worker educators, students on social work courses, people working more broadly in co-production/participation and service users and carers.
Aim This paper reviews the evidence for changes in carers’ attributions regarding the behaviour of people with intellectual disabilities as a consequence of carer training in challenging and complex behaviour.
Method Papers were included in the review if they reported outcomes for carer training on the behaviour of people with intellectual disabilities and used a measure of carer attribution of the behaviour of people with intellectual disabilities. The characteristics of the scales used and the content and length of training are considered as possible factors affecting changes in attribution.
Results Eleven papers were reviewed, most studies using behavioural curricula for their training, and none explicitly set out to change attributions. Eight of the 11 papers reviewed reported changes in attribution although core characteristics of training did not distinguish those papers that reported such changes and those that did not.
Conclusions Changes in beliefs and attributions occur even though these are not identified as a focus within the training provided. The present authors suggest that the formulation processes involved in behavioural training may play a key part in changing attributions as a consequence of this training. The present authors discuss the potential for more focussed intervention designed to change attributions and for better alignment of measures to specific attribution change expected as a result of specific training approaches.
The national outcomes framework for people who need care and support and carers who need support in Wales has been created to deliver on the actions set out in Sustainable Social Services for Wales: A Framework for Action, and the need to fulfil the duties set out in the Social Services and Well-being (Wales) Act. The framework is made up of a well-being statement and the outcome indicators to measure whether well-being is being achieved. The key objectives of the framework are: to describe the important well-being outcomes that people who need care and support and carers who need support should expect in order to lead fulfilled lives, giving people a greater voice and control over their lives and enable them to make informed decisions to ensure they achieve their personal well-being outcomes; to set national direction and promote the well-being of people who need care and their carers; to provide greater transparency on whether care and support services are improving well-being outcomes for people in Wales using consistent and comparable indicators. This will allow the sector to scrutinise its performance and will shine a spotlight on what needs to be done to improve people’s well-being rather than focussing on the processes involved in delivering social services.
A modified Delphi study was carried out in order to obtain consensus regarding the content of a university training course to involve service users and carers at all stages of the health and social care educational process within a higher education environment. Telephone interviews were carried out with service users and carers, educationalists and leaders in the field of service user and carer involvement to generate curriculum ideas. A questionnaire was developed from their responses and sent to a purposive sample of 65 people (24 service users and carers, 28 health and social care educationalists and 13 leaders in the field of service user and carer involvement). Fifty‐five statements were generated with consensus being reached on 46 (84%) statements. Mismatches between service users and carers, educationalists and leaders in the field were explored. Key themes to be included in the curriculum were identified. This paper demonstrates that the best training is not imposed upon service users and carers by academics or others who think they know best; rather, that service users and carers themselves can play a leading role in identifying their training needs and devising strategies to ensure these needs are effectively met.
The aim of this meta-synthesis was to explore young carers' accounts of caring for a family member with an illness, difficulty or disability, and to promote a phenomenological understanding of their experiences. A meta-ethnographic method of meta-synthesis was adopted, utilising the process of reciprocal translation to synthesise 11 qualitative studies. The synthesis yielded four main concepts: (1) becoming a caring person; (2) the adult child - the marks of being different; (3) who is a carer? - others' expectations and stigmatisation; and (4) keeping caring as a secret - protecting the caring role and identity. The synthesis of translation generated the higher-order concept of 'integrating caring into an emerging identity'. This concept considers the experiences of young carers as a process of identity formation in the face of persistent stressful experiences from both within and outside the caring role. The clinical implications of these findings are discussed.
People with intellectual disabilities require training to improve independence, and carers are important partners in the process. Studies show that carers are able to motivate family members with intellectual disabilities to participate in training. In addition, family members may serve as cotrainers. To increase carers' participation, it is necessary to empower them with training techniques and develop strategies to relieve their stress. This article aims to explore the effects of carer support to enhance training quality of daily living skills for their family member with intellectual disabilities, through the use of care case studies, in the context of families living in Hong Kong. A model of multiple case studies is adopted. Three cases are analyzed to illustrate various modes of carer participation.
Purpose– National mental health policies in the UK have a common theme of seeking to develop working partnerships between people who use mental health services, their families and carers and professionals. In Somerset, following a staff training programme, a Family Liaison Service has been developed whereby systemically trained staff work alongside inpatient staff to hold family meetings as part of the assessment and admission process on all wards for working age adults and older people. This article aims to focus on this initiative.
Design/methodology/approach – The article considers the development of the Family Liaison Service and evaluates its progress based on audit data, feedback from families using the service, and a survey of staff experience. Issues raised in developing family inclusive services are discussed.
Findings – Evaluation of the service suggests that, although there is still progress to be made, considerable success has been achieved in embedding the service on inpatient units with a substantial increase in meetings held between staff and families. Feedback from families is positive and staff report increased confidence in engaging with families and carers.
Originality/value – This article describes a transferable model for the implementation of national policy to develop working partnerships with families and carers in mainstream mental health services.
Background: Most patients who have had a stroke are dependent on informal caregivers for activities of daily living. The TRACS trial investigated a training programme for caregivers (the London Stroke Carers Training Course, LSCTC) on physical and psychological outcomes, including cost-effectiveness, for patients and caregivers after a disabling stroke.
Methods: We undertook a pragmatic, multicentre, cluster randomised controlled trial with a parallel cost-effectiveness analysis. Stroke units were eligible if four of five criteria used to define a stroke unit were met, a substantial number of patients on the unit had a diagnosis of stroke, staff were able to deliver the LSCTC, and most patients were discharged to a permanent place of residence. Stroke units were randomly assigned to either LSCTC or usual care (control group), stratified by geographical region and quality of care, and using blocks of size 2. Patients with a diagnosis of stroke, likely to return home with residual disability and with a caregiver providing support were eligible. The primary outcome for patients was self-reported extended activities of daily living at 6 months, measured with the Nottingham Extended Activities of Daily Living (NEADL) scale. The primary outcome for caregivers was self-reported burden at 6 months, measured with the caregivers burden scale (CBS). We combined patient and caregiver costs with primary outcomes and quality-adjusted life-years (QALYs) to assess cost-effectiveness. This trial is registered with controlled-trials.com, number ISRCTN 49208824.
Findings: We assessed 49 stroke units for eligibility, of which 36 were randomly assigned to either the intervention group or the control group. Between Feb 27, 2008, and Feb 9, 2010, 928 patient and caregiver dyads were registered, of which 450 were in the intervention group, and 478 in the control group. Patients' self-reported extended activities of daily living did not differ between groups at 6 months (adjusted mean NEADL score 27·4 in the intervention group versus 27·6 in the control group, difference –0·2 points [95% CI –3·0 to 2·5], p value=0·866, ICC=0·027). The caregiver burden scale did not differ between groups either (adjusted mean CBS 45·5 in the intervention group versus 45·0 in the control group, difference 0·5 points [95% CI –1·7 to 2·7], p value=0·660, ICC=0·013). Patient and caregiver costs were similar in both groups (length of the initial stroke admission and associated costs were £13 127 for the intervention group and £12 471 for the control group; adjusted mean difference £1243 [95% CI –1533 to 4019]; p value=0·380). Probabilities of cost-effectiveness based on QALYs were low.
Interpretation: In a large scale, robust evaluation, results from this study have shown no differences between the LSCTC and usual care on any of the assessed outcomes. The immediate period after stroke might not be the ideal time to deliver structured caregiver training.
Background and objectives: Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.
Methods: A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.
Results: Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.
Conclusions: This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.
BACKGROUND: United Kingdom legislation and clinical standards for schizophrenia challenge nurses to re-examine the support that they provide to carers. Nurses are in a key position to provide this support but may lack the necessary skills to do so. The training programme evaluated in the present study aimed to address this problem.
STUDY AIM: To evaluate change in clinical practice brought about by post-registration training for mental health nurses in supporting carers of people diagnosed with schizophrenia.
DESIGN/METHODS: The study was undertaken in collaboration between the Universities of Dundee and Glasgow, and Tayside National Health Service (NHS) Trust (Scotland). Respondents were nine nurses who completed training and then delivered a planned programme of support to carers. Data on nursing practice were gathered through semi-structured interviews with nurses before training and after providing support. Following the support intervention, carers also commented on the nurses' practice.
FINDINGS: Eight of the nine nurses reported changes in practice in five key areas: They built collaborative relationships with carers, developed a carer focused approach to their practice, acknowledged and supported the carer role, and made progress in identifying carer needs and accessing resources to meet these needs. Nurses experienced difficulties supporting carers who had mental health problems or previous negative experiences of services. Those who lacked community experience also found it difficult to adjust to working in a community setting. Although clinical supervision helped them to work through these difficulties, they remain largely unresolved.
CONCLUSIONS: Findings from this study indicate that appropriate training may enable nurses to improve the support provided to carers of people diagnosed with schizophrenia. This study represents an important stage in determining the nature of support offered to carers by nurses. While developed to help nurses to meet clinical standards set for schizophrenia in the UK, findings may have clinical significance for nurses in other countries.
Objectives: Physical exercise has been associated with a range of positive outcomes including improvements in psychological well-being. The aim of the present study was to review current evidence on the effects of physical activity interventions for carers of people with dementia.
Methods: Systematic review. We searched electronic databases and key articles of studies that have evaluated the effectiveness of physical activity interventions in improving psychological well-being in carers of people with dementia. Relevant papers were scored according to established criteria set by the Cochrane Review Group. Selection criteria for studies were a randomized controlled trial (RCT) design, and comparing physical activity with a control group receiving no specific physical activity intervention. Two reviewers worked independently to select trials, extract data, and assess risk of bias.
Results: A total of four RCTs met the inclusion criteria. Studies evaluated home-based supervised physical activity of low to moderate intensity, which included either aerobic exercise, or endurance training. Pooled data showed that physical activity reduced subjective caregiver burden in carers, standardized mean difference −0.43; 95% confidence interval (CI) −0.81 to −0.04, in comparison to a control group of usual care.
Conclusions: There is evidence from two RCTs that physical activity reduces subjective caregiver burden for carers of people with dementia. Although statistically significant, the observed benefits should be interpreted with caution as the studies conducted so far have limitations. Further high-quality trials are needed for evaluating the effectiveness of physical activity in improving psychological well-being in carers of people with dementia. Copyright © 2014 John Wiley & Sons, Ltd.
If pressure damage is identified and addressed at an early stage, it may be reversed. Otherwise, it may quickly progress into a serious deep tissue injury. In the community, most daily skin care is undertaken by formal and informal carers. They therefore need to know how to identify signs that pressure ulcers may develop and what immediate actions to take. NICE guidance on pressure ulcer prevention is too extensive to be a simple tool for carers, so a SSKIN bundle was adapted for community use. This ensures carers know how to prevent and identify pressure damage, and includes skin care, repositioning and use of equipment. Carers need training. This is the responsibility of all involved with the patient, including healthcare and local authority services. [ABSTRACT FROM AUTHOR];Copyright of British Journal of Community Nursing is the property of MA Healthcare Limited and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission.
Involving service users and carers in the education and training of social workers is higher on the agenda in developed countries than ever before. Higher education institutions that run these programmes are required to involve service users and carers at all levels of the design and delivery of the programmes. The experiences of user involvement in social work education in the countries of transition, such as Macedonia, are however lacking. This article discusses the modalities, principles and benefits of user involvement in social work education based on the Anglo-Saxon experiences and make a reference to their applicability within the Macedonian context where relevant. The author focuses initially on the modalities in which user involvement may take place: teaching and learning, practice assignments, curricula development, student’s assessments, planning management and evaluation of courses etc. Further, it briefly explores core principles, as well as issues related to participation planning and payment.
AIM: To study the effectiveness of Reitman Centre “Coaching, Advocacy, Respite, Education, Relationship, and Simulation” (CARERS) program, which uses problem-solving techniques and simulation to train informal dementia carers.
METHODS: Seventy-three carers for family members with dementia were included in the pilot study. Pre- and post-intervention data were collected from carers using validated measures of depression, mastery, role captivity and overload, caregiving competence and burden, and coping styles. To assess program effectiveness, mean differences for these measures were calculated. One-way ANOVA was used to determine if change in scores is dependent on the respective baseline scores. Clinical effects for measures were expressed as Cohen’s D values.
RESULTS: Data from 73 carers were analyzed. The majority of these participants were female (79.5%). A total of 69.9% were spouses and 30.1% were children of the care recipient. Participants had an overall mean age of 68.34 ± 12.01 years. About 31.5% of participating carers had a past history of psychiatric illness (e.g., depression), and 34.2% sustained strained relationships with their respective care recipients. Results from carers demonstrated improvement in carers’ self-perception of competence (1.26 ± 1.92, P < 0.0001), and significant reduction in emotion-focused coping (measured by the Coping Inventory of Stressful Situations, -2.37 ± 6.73, P < 0.01), Geriatric Depression scale (-0.67 ± 2.63, P < 0.05) and Pearlin’s overload scale (-0.55 ± 2.07, P < 0.05), upon completion of the Program. Secondly, it was found that carers with more compromised baseline scores benefited most from the intervention, as they experienced statistically significant improvement in the following constructs: competence, stress-coping style (less emotion-oriented), sense of mastery, burden, overload.
CONCLUSION: Study results supported the effectiveness of the CARERS Program in improving caregiving competence, stress coping ability and mental well-being in carers caring for family members with dementia.
The article discusses the British Young Carers in School program which is designed to provide information, staff training, and other resources to schools to help them improve the support which they provide to students who have caregiving responsibilities. It notes the program is led by the nonprofit groups Carers Trust and The Children's Society and cites an award under the program received by Applemore College secondary school, Hampshire, England.
The Essence of Care benchmarks are a tool to help healthcare practitioners take a patient-focused and structured approach to sharing and comparing practice. There are 12 benchmarks in total. This document outlines the benchmarks for communication, in order to support people and their carers to experience effective communication. It starts by listing the general indicators that apply to every factor: people’s experience; diversity and individual needs; effectiveness; consent and confidentiality; people, carer and community members’ participation; leadership; education and training; documentation; service delivery; safety; and safeguarding. It then lists the factors specific to communication, together with their supporting indicators. The factors are: interpersonal skills; opportunity for communication; assessment of communication needs; information sharing; resources to aid communication and understanding; identification and assessment of principle carer; empowerment to perform role; co-ordination of care; Empowerment to communicate needs; Valuing people’s and carers’ expertise and contribution; People’s and/or carers’ education needs.
This report is the Government's Annual Report to Parliament which gives our reply to the Learning Disability Task Force report 'Making Things Happen'. Reports on the work that has been done since the White Paper 'Valuing People:A New Strategy for Learning Disability for the 21st Century' launched in March 2001.
Introduction: Interest in the integration of health and social care services has grown in recent years amongst all Governments in Europe in light of the increasing numbers of older people and those affected by chronic illnesses. This poster offers a review of the “Album of 10 Good Practices of integration at European level” carried out within the Advancing Integration for a Dignified Ageing (AIDA)- Project (www.projectaida.eu/). This was funded by EU Progress Program with the purpose of highlighting common aspects of effectiveness. Methods: The AIDA Project Consortium developed a criteria for selection of good practices on the basis of most relevant conceptual frameworks on integrated health and social care for older people. 28 initiatives were selected by an Advisory Board (AB) composed by five international experts in the field. The provider/ coordinator of each selected initiative (or a lead academic with an interest in the project) has provided an overview of the project, the legal and social context in which it was set, enablers and barriers, and evaluation of impact. The case-studies were then analysed to highlight success factors and impact on users, service providers and overall health and social care systems. Results:description of the case-studies
This paper describes the increased national focus on including families and carers in all aspects of mainstream mental health services. It proposes that the specific recommendations included in the National Service Framework for Mental Health be brought together in the form of a strategy to enhance working partnerships with families and carers. It advocates that the implementation of the NSF requires a comprehensive awareness and basic skills training in order that the consideration of families and carers becomes a routine part of mainstream services.
Purpose – The purpose in writing this paper is to highlight the lack of knowledge of many who are involved in capacity assessments, especially non‐professionals such as carers of the learning disabled, and the view that current guidance for capacity assessments does not take into account issues of emotionality.
Design/methodology/approach – The approach is to discuss current guidance and practice, and to offer academic criticism and explanation.
Findings – The findings include the discovery that the Mental Capacity Act 2005 Code of Practice suggests that healthcare professionals and family/carers may undertake assessments of decision‐making capacity, yet the guidance it provides for their doing so overlooks salient issues. Many of those involved in the daily lives of those, who may lack decision‐making capacity (and thus be seen as legally incompetent) such as the learning disabled, demented, mentally ill and neurodiverse, must decide whether to respect their decisions as competent, or to disregard the decisions on the grounds of incompetence and to act in the person's best interests. As many will lack training in their clinical and legal responsibilities and liabilities, it is crucial that they, and those they care for, are protected by not only an increased knowledge of mental capacity legislation and practice, but also how it may apply to questions of emotionality and neurodiversity.
Originality/value – This paper expands and builds on the authors' previous research into including emotionality in assessments of capacity, and will be of use to practitioners in the field of learning disability, and other psychiatric specialities.
Few family placement schemes involve adult persons, and rarely have they been targeted at older carers. Twenty-five carers, aged 55 years and over, of people with intellectual disabilities using one of two placement schemes in Northern Ireland were studied, along with a further 20 carers recommended for these schemes. Semi-structured individual interviews were used to obtain the views of carers, people with intellectual disabilities and placement providers. The placement schemes were very favourably received. Carers welcomed the break and valued the relationship with the placement provider. Individuals with disability reported greater opportunities to participate in activities. Placement providers were very satisfied with the way the schemes operated: the main complaint was the low level of payments. Key factors affecting the further development of services include recruitment of male providers, registration issues, training of providers and the difficulty in meeting the needs of multiply disabled persons.
The participation of service users with intellectual disability and carers is essential in medical and psychiatric training at all levels. It validates the training experience provided by incorporating service users’ and carers’ perspectives and their experience of mental illness/challenging behaviour, anxieties, interactions and feelings generated when dealing with professionals involved in their care, and also provides an understanding of expectations, views on met and unmet needs and how management options are best explained and communicated for meaningful participation in providing consent and in making treatment decisions. This article brings together the benefits of involving service users with intellectual disability and carers in teaching, discussing their roles as trainers, and providing practical tips to plan sessions as well as recognise and overcome barriers.
No abstract is available for this article.
Much confusion still surrounds the concept of empowerment and how it is to be translated into practice within the context of community care for service users and carers. A major limitation has been the tendency to treat empowerment as synonymous with participation in decision-making with little attention given to the ‘ecological’ model of empowerment where linkages have been found between community participation and measures of psychological empowerment. Training has been suggested as a means through which carers might become empowered, yet to date little empirical evidence has appeared within the literature to support this proposition. This study investigated whether attendance on a training programme to empower carers resulted in improvements in carers’ levels of perceived control, self-efficacy and self-esteem as partial measures of psychological empowerment. The findings demonstrated that whereas carers’ knowledge of services and participation increased as a result of the programme, no changes were found in measures of carer empowerment. The failure to consider how training needs to be designed in order to achieve changes in individual competence and self-agency are suggested as the most likely explanation for the lack of change observed in carers’ psychological empowerment. It is suggested that community care agencies should focus greater energies in determining how the policy objectives of empowerment are to be achieved through training, and in so doing make far more explicit the supposed linkages between training content, design, and its posited impact on individual behaviour or self-agency.
Purpose – The purpose of this paper is to highlight the complexity surrounding the implementation of advanced electronic tracking, communication and emergency response technologies, namely, an extended safety and support (ESS) system for people with dementia (pwd) living at home. Results are presented from a Swedish demonstration study (2011-2012) conducted in 24 municipalities.
Design/methodology/approach – It is a descriptive intervention study with a pre-post test design. Questionnaires were administered to pwd, carers and professionals at the outset and eight months later. ESS logging data were analyzed.
Findings – ESS usage rates varied widely. A total of 650 alerts were triggered, mainly when the pwd was outdoors. Activities were reduced amongst pwd, most likely due to a progression of their disease. Carers noted that pwd were more independent than previously on those occasions when they engaged in outdoor activities. Staff considered that nearly half of pwd could remain living at home due to the ESS, compared with a third amongst carers. In total, 50 per cent of carers felt it was justified to equip their relative with an ESS without their explicit consent, compared to one in eight staff.
Research limitations/implications – A limitation is the amount of missing data and high drop- out rates. Researchers should recruit pwd earlier in their illness trajectory. A mixed-methods approach to data collection is advisable.
Practical implications – Carers played a crucial role in the adoption of ESS. Staff training/supervision about assistive devices and services is recommended.
Social implications – Overall, use of ESS for pwd living at home was not an ethical problem.
Originality/value – The study included key stakeholder groups and a detailed ethical analysis was conducted.
Purpose: The aim was to examine stroke patients’, carers’ and volunteer supporters’ experiences of peer support groups during hospital rehabilitation. Methods: Semi-structured interviews and questionnaires were analysed by inductive thematic analysis. Participants also answered a standardised Therapeutic Factors Inventory (TFI). Results: Five superordinate themes emerged for patients, carers and volunteer supporters. Three themes related to group processes; ‘practical issues’ (five subthemes), ‘staff presence’, ‘similarity-difference’, and comparison with other group members. ‘Value of peers’ (five subthemes) described beneficial outcomes. The ‘similarity-difference’ theme and four subthemes under ‘value of peers’ were related to items from the TFI which drew agreement from most participants. The supporters had some unique themes; two were concerned with group organisation, one was the experience of ‘being helpful to others’ and one described the experiences of training. As well as its links with themes, agreement with TFI items revealed experiences that did not emerge as themes; feeling secure, expressing emotions and increased independence. Conclusions: Participation in the group was experienced as beneficial by participants. Benefits included helpful information, advice, making new connections and increased awareness of stroke. Participants identified important group processes such as upward and downward comparison. Responses to the TFI suggested that attendance brought therapeutic gains.
Objective:The consequences of informal care giving have been well documented in recent decades, and in many fields of illness and chronic disease, the role of informal carers has been recognised and investigated. Informal caregivers in the field of wound management and prevention have been largely unnoticed, despite the chronic nature of many wounds, the enduring nature of treatments and the impact on the physical and social environment; factors likely to have a significant impact on family and friends. The aim of this study was to consider what published evidence is available regarding the experience and role of informal caregivers in wound management or prevention.
Method: An integrated literature review was completed in October 2014 searching ESBCOhost database, Wound Management Association websites, and reviewing reference lists of accessed papers.
Results: A number of challenges were noted in accessing information about informal carers in relation to wound management and prevention. Most of these arose from the scarcity of studies for which informal carers was the primary focus. The available evidence suggests that informal carers have a role in wound management and prevention and that their involvement is likely to represent a noteworthy economic contribution to the wound management health-care team. Wound management was also determined to yield physical and psychological impacts for the carer. There was limited evidence of structured information, support or training for informal carers, which was flagged by carers as an area of need.
Conclusion: General conclusions about the burdensome experience and the valuable role of carers were the main interpretations possible from the evidence. More research which purposively and comprehensively examines the experience and role of informal caregivers is required. This knowledge would provide a foundation upon which interventions and support for informal carers and patients can be generated, which could further serve to enhance wound healing and the prevention of skin damage.
As part of an evaluation of service users’ and carers’ experience of involvement in mental health education, training and research, an extended literature review was undertaken. The purpose of this was to review policy underpinning service user and carer involvement in those areas, identify the extent and range of involvement, the processes involved, and the extent to which the effectiveness and impact of involvement had been evaluated. The review found that there was a range of different ways in which people were involved. It identified different types and levels of involvement and different motivations for taking part in involvement activities. Government policy and guidance on public and patient involvement (PPI) in health services has clearly been a driver and has resulted in widespread involvement activity but this has developed on an ad hoc and inconsistent basis.
There are benefits for service users and carers, the NHS, and educational establishments arising out of involvement activity. These include improvements in the health and well-being of service users, enhancing the student experience, and improvements to service delivery. However, there are still barriers to involvement including organisational factors and unintentional discrimination. Payment for involvement activity remains an under researched area. Service users value payments but welfare benefits rules, and inconsistent interpretation of good practice guidance, mean this can be a further barrier to involvement. Currently, the evidence base evaluating the effectiveness of service user involvement in a range of activities including service planning, delivery, education and research is limited.
Family care-givers play a vital role in the support of people with dementia. In addition to opportunity costs, care-giving has been linked to a wide range of negative outcomes, including psychological disturbance, physical health problems, relationship changes and social activity restrictions (Donaldson et al, 1997). Carers identify access to information and training as an essential requirement in their struggle to continue in the care-giving role (Blackwell et al, 1992). To what extent are these training needs currently met? Despite an undoubted demand, few training initiatives exist for informal carers, or indeed for formal home care staff, a deficiency which has prompted a European Union project to develop a training package for family carers of elderly people with dementia (O'Donovan et al, 1997; Turner & Street, 1999).
Objective: To review non-drug treatments for dementia; to provide a source of evidence for informal carers who want ideas about non-drug approaches for dementia, that they might try or that they could try to access. The systematic review addresses: what non-drug treatments work and what do they work for? What non-drug treatments might work and what for? What non-drug treatments do not work?
Methods: Literature searches of seven electronic databases (AMED, CINAHL, EMBASE, MEDLINE, PSYCINFO, Cochrane Library of Systematic Reviews and DARE) were carried out in November 2007 using the following search terms (or derivatives): dementia/Alzheimer's AND Review AND non-drug therapies and aimed at finding systematic reviews.
Results: Thirty-three reviews were identified; 25 were judged to be high or good quality. Studies within these systematic reviews were characterised by weak study designs with small sample numbers. Three interventions were found to be effective for use with particular symptoms of dementia: music or music therapy, hand massage or gentle touch and physical activity/exercise.
Conclusions: Whilst informal carers can apply some of the interventions highlighted in the home setting at little or no cost to themselves or to health or social care services, others are likely to require training or instruction. Service providers and commissioners should explore current and future provision of more structured group activities for people with dementia; in particular the provision of group music therapy and group exercise activities that meet the needs of both the person with dementia and their carer. Copyright © 2009 John Wiley & Sons, Ltd.
This Bill is to make provision about employment of carers and the duty to inform carers of the right to assessment, and to place duties on local authorities and health bodies to achieve this.
This second article on family care-givers will focus on how healthcare assistants (HCAs) can support such care-givers within a variety of care settings, including GP practices, healthcare centres, hospital departments, hospital wards and in the care-giver's own home. Suggestions for training of HCAs who are likely to work with family care-givers will be proposed.
The NHS Plan, Department of Health (2000) made a commitment that patients should be able to receive copies of clinicians’ letters about them as a right in order to improve communication and enable patients to participate in their care. In South Gloucestershire, the opinions of local service users with learning disabilities, their carers, and professionals working within learning disability services about this issue were sought using questionnaires and focus groups in order to identify and then develop good practice. A number of practice issues were identified: protocols for developing individualised accessible information are needed, involvement of service users in the management of their information and maintenance of its confidentiality, and involvement of carers in the sharing of information, if this is appropriate. A communication strategy needs to be developed by services working with people with learning disabilities, in conjunction with service users and carers. The resource and training implications of this area of service development need to be considered.
A major issue in research, policy and professional practice is the social exclusion of carers, in particular carers for people with mental health problems. In order to address the issue of social exclusion from the perspectives of professionals, 65 participants were interviewed. The sample included directors, managers and senior staff from the social care, health and voluntary sectors. Respondents were asked to comment at length on the social exclusion of carers. Findings highlight four main types of exclusion: first, personal exclusions, including stigma; keeping mental health problems ‘a secret’; and taboos surrounding mental health care; second, social exclusions, such as isolation; narrowing of social networks; restrictions due to time commitments; exclusions relating to education, training, employment and leisure; and young carers; third, service exclusions involving carers being taken for granted and having difficulties with access to appropriate services; and fourth, financial or economic exclusions that lead to carers paying for care. This paper documents patterns of exclusion and draws out implications for research, policy and professional practice. In conclusion this paper also considers the ways in which professionals and services may better promote the social inclusion of carers for people with mental health problems in the future.
Alzheimer's disease (AD) is a one of the leading cause of dependency among older adults and of institutionalization in Europe. The number of people with AD is estimated in 10 million people and the cost of the disease has been recently estimated in 100.000 million of euros per year in the European Union (European Brain Council, 2011). There is nowadays no effective treatment of the disease. Currently, care of AD patients is primary sustained by informal caregivers who suffer burden as a result of their care responsibilities, and consequently are mainly affected by mental health problems (depression, anxiety, etc). This burden is also related with a premature institutionalization and violence against AD patients. In this sense, effective solutions are needed in order to fight against the mental health problems of informal caregivers. Regarding this, a social innovation research, funded by the Progress Programme of the DG of Employment, Social Affairs and Inclusion of the European Commission, is being developed currently in France and Spain, where the authors are aimed to demonstrate how a specialized formal training in AD addressed to people in risk of labour and social exclusion could improve the quality of life of AD patients and reduce the informal caregiver burden. The results of this research is specially relevant to help to reduce mental health problems of the informal carers of AD patients, but also in terms of intervene on the cognitive skills of the persons affected, as well as to allow the employment of socially excluded people.
The article focuses on a strategy meant for providing support for carers across Northern Ireland. The strategy quotes census figures indicating that there are more than 185,000 unpaid carers in Northern Ireland, equating to about 11 percent of the population. Carers need some help and support to enable them to continue in their caring role. The strategy include the identification of those acting in a caring role, information for carers, support services, the special needs of young carers and training and employment.
The Scottish Government and COSLA are determined to ensure that carers are supported to manage their caring responsibilities with confidence and in good health, and to have a life of their own outside of caring. We are pleased to have worked together with a range of interests, including Health Boards, the national carer organisations and carers in developing this strategy. It will build on the support already in place and take forward the recommendations of the landmark report, Care 21: The Future of Unpaid Care in Scotland. We recognise carers as equal partners in the delivery of care in Scotland and fully acknowledge carers’ expertise, knowledge and the quality of care they give. With appropriate support, especially support delivered early to prevent crisis, caring need not have an adverse impact on carers. Caring Together sets out 10 key actions to improve support to carers over the next five years. The focus is on improved identification of carers, assessment, information and advice, health and wellbeing, carer support, participation and partnership. In support of this agenda, the Scottish Government is pleased to announce an investment of a further £1 million in 2010-11 to voluntary sector organisations to provide more innovative short breaks provision in Scotland. The strategy sits within a wider context and reform agenda, with carers at the heart of this agenda. In order to achieve lasting change both for carers and the people they care for, we need to drive forward a range of policy developments, such as action to tackle health inequalities and household income. We need to do more to shift resources from institutional care to care at home, including support for carers. The Reshaping Care for Older People Strategic Delivery Plan, which is in preparation, will articulate the extent of the shift in resources within the system.
Purpose – This paper describes an ongoing process of engagement with carers of people with intellectual disabilities currently being monitored by an out of area service for both carers of people placed both in area and out of area within a local Mental Health Learning Disabilities team in South London.
Design/methodology/approach – Using a series of consultation events, carers were asked to participate in a free dialogue which focussed on everyday issues for carers. This included financial implications of caring, knowledge of care pathways/systems in care, carer's needs and expectations and the support they currently receive.
Findings – This paper highlighted a number of issues and concerns that carers face in their daily lives when supporting one or more people. These include lack of recognition, financial difficulties, lack of training and support.
Originality/value – This project offered a valuable insight into current carer perceptions and will help develop further discussion and promote greater engagement by services and mutual understanding with this often neglected group.
This study assessed differences between service users’, family carers’ and mental healthcare providers’ perceptions on service user and family carer involvement in mental healthcare. We conducted questionnaires in care networks for persons with serious and persistent mental illness, among 111 service users, 73 family carers and 216 mental healthcare providers. Many aspects of service user and family carer involvement are achieved to satisfactory levels while other aspects are scarcely realized. Service users and mental healthcare providers perceive family carer involvement as less important and realized than service user involvement. Family carers hold more favorable views on the importance and realization of involvement than do mental healthcare providers. The implementation of stakeholders’ involvement in healthcare is ongoing. Notwithstanding great efforts, service users’ and family carers’ involvement preferences are not yet fully considered. Developing procedures, training and monitoring cycles regarding involvement may enhance this situation.
Background: Approximately one in ten of the UK population are unpaid carers supporting a family member or friend who could not manage without their help, saving the UK economy an estimated £87 billion. This role is known to sometimes have a negative impact on carers and to require support both informally and from statutory services. General practice is a first point of contact for carers but research investigating general practitioners' (GPs') attitudes towards carers and awareness of issues facing carers is rare. This study therefore aimed to identify GPs' attitudes, awareness of issues, and perceptions of the barriers and enablers to provision of services.
Methods: Using a self-completion questionnaire distributed at a series of workshops, this study investigates GPs' attitudes to carers; awareness and knowledge of carers' issues; services offered in general practice and barriers to supporting carers.
Results: Seventy eight out of a total of 95 GPs (82% response rate) from a variety of areas in England completed the questionnaires. The GPs identified time, resources and lack of knowledge as barriers, but only 9% agreed with the statement that there is little support they can offer carers. However, nine in ten GPs (89%) feel they have insufficient training here and approximately half of them (47%) lack confidence that they are meeting carers' needs. Confidence in identifying carers is also low (45%). Issues that GPs would look out for amongst carers include emotional and physical health problems and financial and isolation difficulties. GPs specifically highlighted educational and isolation issues for young carers. Few services were described that targeted carers.
Conclusions: GPs recognise that they have an important role to play in supporting carers but would like training and support. Further investigation is needed both to determine how best to train and facilitate GPs and general practice teams in their role in supporting carers and to identify what carers need and want from general practice. Identifying carers' leads or carers' champions amongst practice staff is possibly one way forward. Given the proposed greater commissioning role for primary care, greater understanding here is particularly important.
Purpose – The purpose of this paper is to describe the use of poetry by family carers as a way into the inner world of a person with late stage dementia, consistent with their values, preferences and experiences; enhancing the wellbeing of both the person with dementia and family carers.
Design/methodology/approach – The use of poetry is being increasingly recognised as valuable in improving wellbeing for people with dementia. Poetry has an intrinsic quality which is well-suited for people with dementia: it does not require following a storyline and therefore can be enjoyed by those with no short-term memory.
Findings – The paper describes the benefits to both family members and the person with dementia; the use of poetry opened up expression of deep emotions, improved communication and enriched family relationships.
Research limitations/implications – Use of poetry by family carers with people with late stage dementia is under researched in the UK and further study of the impact of this intervention would be beneficial.
Practical implications – Poetry can be used practically in both small groups in care homes or community settings and also one to one by family carers. Of especial value are poems that have been learnt by heart when young.
Originality/value – Finally, the paper also draws attention to the positive lessons we can learn from people with dementia.
This reports on the Disability and Carers (DCS) Customer Service Survey 2008. Results showed that overall satisfaction with the DCS continues to be high and that there have been some signs of improvement since the previous year. The report suggests a number of aspects of the service that should be focused on. Contents include: overall customer attitudes; delivering the customer promise / vision statement; making contact with the Disability and Carers Service; the claims process; strategic priorities for contact; areas for improvement; Disability and Carers Service priority customer groups; carers allowance; receiving DLA while in work or training.
This training resource uses series of monologues from people with dementia and their carers to promote discussion and increase awareness of the problems they face. The monologues are brought to life by the actors Godfrey Jackman and Pam Lyne, using the words of the writers or speakers. A CD-ROM includes a set of facilitators' notes based on the Alzheimer's Society's interpretation of the films and their relevance to the support of people with dementia and their carers.
Purpose – The purpose of this paper is to discuss the use of virtual reality (VR) for experiential learning in dementia training. People have different perceptions and understanding of what it is like to live with dementia, particularly those that are new to dementia care, whether in a professional capacity, or as a friend or family member. Arguably the most powerful way in which to enhance understanding is to give people a glimpse of what living with dementia might be like.
Design/methodology/approach – The myShoes project aimed to create a resource that would augment a virtual environment and expose the user to an experience that gives them a sense of what living with dementia might be like. The resource was created using the latest VR and game development software. A sample group of students from a mixed range of health professions tested the resource providing in depth feedback on its immediate impact and ideas for further development.
Findings – Notwithstanding the limited sample on which the simulation has been tested, carefully designing the activities and constructing a learning space that allows for reflection on being placed temporarily in another person’s shoes, appears to have enabled students to think beyond ‘treatment, to considering how the person might feel and altering their approach accordingly.
Research limitations/implications – This is a pilot study. More research using VR as a training resource is planned.
Practical implications – The study will support educational training, particularly that which uses virtual reality for clinicians and carers.
Social implications – The adoption of a VR approach to training formal and informal carers has potential to enhance empathy and improve holistic care of people with dementia.
Originality/value – The myShoes project adopts a novel approach to simulating the effects of dementia for training purposes.
Background: Significant others are important to persons with aphasia. For several reasons they should be involved in speech-language pathology (SLP) services, including acquiring facilitating communicative strategies and receiving support. In order to further adapt SLP services there is a need to know the perceptions and views of the significant others. Little is known about how they perceive changes in communication as well as received SLP services and in what way they want to be involved in these services.
Aims: The study aimed to investigate which communicative changes significant others of persons with aphasia had experienced after a stroke event and to what extent these changes were experienced. A further aim was to describe the significant others' experiences of SLP services and their motivation to participate in these services. Finally, the significant others' experiences were compared in terms of sex, age, type of relationship, time since stroke onset, and type and severity of aphasia.
Methods & Procedures: An 80-item study-specific questionnaire was answered by 173 significant others of persons with aphasia living throughout Sweden (response rate 69%). Of these, 33% were male and 67% female. Mean age was 64.2 years (range 33–87 years) and 85.5% of the participants were a cohabiting partner to a person with aphasia.
Outcomes & Results: A total of 64% of participants perceived their conversations as being less stimulating and enjoyable compared with conversations before stroke onset. Aphasia was considered a substantial or very substantial problem by 64%. The participants took on an increased communicative responsibility, and 70% had changed their communicative behaviour in order to facilitate conversations. A total of 75% (n = 130) had met with the SLP of the person with aphasia. Of those, 63% perceived their own support from SLP services to be adequate; 87% considered language ability training as the most important SLP service. Type and severity of aphasia were especially related to the communicative experiences of the participants and their motivation to be involved in SLP services.
Conclusions: The substantial decrease from pre- to post-stroke regarding enjoyment and meaningfulness of conversations suggests the need to further improve SLP services in order to help the people in question communicate at an optimal level. We suggest that clinicians should put more emphasis on explaining the benefits and availability of different kinds of aphasia rehabilitation services, such as functional communication training and communication partner training in addition to language ability training.
Purpose – The purpose of this paper is to explore the interface between the professional and personal, and particularly personal realities reflected in the Equality Act (2010), within a clinical psychology training context.
Design/methodology/approach – An innovative action research process involving discussions, seminars and focus groups. The first author was a trainee on the programme and had been an informal carer. The other two authors are programme staff with service user experience. In the cycle presented here, six staff members and 14 trainees attended five 50‐minute reflective group sessions. Data were collected by focus group and analysed using thematic analysis.
Findings – Participants voiced continuing uncertainty about the personal‐professional interface alongside increased understanding of ways to enact it. Parenthood, class and mental health were identified as important domains and competition between these emerged as a theme.
Research limitations/implications – The reflective groups and focus group have contributed to a process of change in relation to service user involvement and trainee learning. Transferability of the findings to other programmes is discussed and further research is required.
Practical implications – The authors would advocate for partnerships between trainees, staff and service users as a means of learning, researching and change within mental health training.
Originality/value – The authors are unaware of any other similar work: the unusual collaboration by the authors, the use of action research and the adoption of reflective groups within the process is unique.
The aim of this work is to know the training programme for Home Peritoneal Dialysis patients in Spain. For the study a survey was designed with 50 closed questions and one open question. It was sent to 104 hospitals and participation of 78.84% was obtained (n=82). The average number of Peritoneal Dialysis patients in the centres surveyed was 27.6 patients: 15.8 patients on Continuous Ambulatory Peritoneal Dialysis and 11.8 on Automated Peritoneal Dialysis. With the rest of the questions we investigated the teaching methodology used in the different units, the involvement of the family in the Training Plans, the basic knowledge imparted to the patient on chronic renal insufficiency, the activities necessary to carry out the treatment, the preparation provided so that they can deal with minor incidents and emergencies and to improve their quality of life. Questions were asked about the Training Plan for self-sufficient patients who were on Automated Peritoneal Dialysis and finally, a section was left for the different centres to add anything not included in the survey. With the results obtained we were able to conclude that 92.1% of the centres in Spain have a Training Plan that can prepare patients or the informal carer to give the treatment in a safe way at home, provide them with basic knowledge on the illness and routine activities for the treatment, deal with incidents and emergencies and improve their quality of life while on dialysis.
1. This document is a summary of the responses received during the consultation on revised statutory guidance to implement the Strategy for Adults with Autism in England. It highlights the key themes and common issues from the consultation responses and sets out the Government’s response that has shaped the statutory guidance. 2 Autism is a lifelong condition that influences how people interpret the world and interact with others. It is estimated that more than 500,000 people in England are on the autism spectrum, which includes people with high functioning autism and Asperger Syndrome. Autism is something that people and their families live with permanently so gaining the right support at the right time can make a significant difference to people’s lives. 3. The statutory guidance updates the original guidance, taking into account progress made since 2010 and changes in line with recent legislation such as the Care Act 2014 and the Children and Families Act 2014
Colin Barnes describes how he sets about offering communication advice to family carers of people with dementia, and the materials he has developed to help carers understand the reasons for common difficulties and strategies for more successful communication
Penny Hibberd introduces an innovative idea for involving carers in higher education, and carers Caryn and Ted Bird explain how they have benefited from the approach
Suffolk's HSJ Award-nominated People Project aims to empower service users and carers. Participants attend workshops on subjects including getting heard. The project has secured a new round of funding to take it through to August 2006.
Capital is a user‐led training, consultancy and research organisation based in West Sussex. When the local mental health trust decided to evaluate its assertive outreach team, Capital bid to conduct a qualitative review through one‐to‐one interviews with the team's clients and their carers. In this candid article the project team members describe the process, the hurdles and obstacles they encountered, how they were negotiated or overcome, and what they learned from the experience.
Service users, carers and academics describe participation in the social work degree at Bucks New University. It looks at the different ways that users and carers are involved in the course, the importance of the university providing appropriate training and support, the benefits students get from contact with users and carers and what users and carers gain from the experience. The video will be of interest to social worker educators, students on social work courses, people working more broadly in co-production/participation and service users and carers.
Our experience of partnership working on a Scottish project on service user and carer involvement in social work education has been a deeply politicising one. First-hand encounters with power enacted at various sites of service user and carer involvement across national, institutional and local university levels have demonstrated to us that 'partnership working that pushes at the orthodox structures of power is difficult' (Barnes et al., 2006, p. 434). In this chapter we provide a commentary on service user and carer involvement in social services work, in social work education in particular, with a focus on the enactment of power. We explore the nature of partnership arrangements with service users and carers; examine the processes through which partnerships are navigated; and review what is known about the outcomes of such partnerships on social work knowledge and education, and ultimately on social work practice itself.
AIMS AND METHOD: We aimed to introduce mental health service users, carers and workers to working as research partners with an academic unit, and provide training to facilitate participation. We achieved this by running workshops covering different stages of the research process.
RESULTS: Service users, carers and workers attended the workshops, although carers were underrepresented. Feedback was generally positive, and some participants have since become involved as researchers with projects at the Academic Unit.
DISCUSSION: Detailed planning was crucial for deciding the course content, recruiting participants, responding to participant feedback and ensuring future research opportunities were available.
The involvement of service users and carers in health services research is increasingly expected (Department of Health, 2001). Service users, carers, academics and health professionals are recognised as having potentially different perspectives to contribute (Townend & Braithwaite, 2002). To avoid tokenism, and allow different parties to contribute as equal partners, all those involved need knowledge of the research process. The Academic Unit of Psychiatry at the University of Leeds held a series of workshops to provide research training and to introduce mental health service users, carers and workers to the idea of partnership research.
Public involvement in research can take place at a number of levels, reflecting both the degree of involvement and the philosophy behind it. This has been described as a continuum - from consultation (lowest level of involvement, no sharing of power in decision-making), through collaboration (ongoing involvement, active sharing of power in decision-making), to user-controlled research (highest level of involvement, users have decision-making power) (Faulkner, 2004; INVOLVE, 2004). The workshops had a clearly stated aim of developing collaborative research. In particular, the Academic Unit wished to build capacity for user involvement in its own research, by developing unit staff in partnership working as well as by providing research expertise to potential partners.
Background: Worldwide with ageing populations, the numbers of informal carers are likely to increase. Although being a carer is often satisfying, it can be challenging and require support. Volunteer-provided carer mentoring services where carers are supported by volunteer mentors are one such intervention. However, little is known about the impact of mentoring, carers’ experiences or the mechanisms by which these schemes may work. Previous quantitative findings have been inconsistent suggesting a different, mixed methods approach using qualitative and quantitative methods may be valuable.
Objectives: Objectives were to explore two main questions: whether mentoring had a significant positive effect on carer mentees in terms of mental health, quality of life and confidence in caring and to explore how carers experience and perceive the process and benefits of mentoring. In addition, the study aimed to suggest possible mechanisms to understand how mentoring may benefit carers.
Methods and setting: Mixed methods (quantitative questionnaires and depth interviews) investigated an established mentoring service provided by volunteer mentors. During the study period, 28 carers received mentoring. Of these, 25 carers completed structured questionnaires both before and after mentoring, to determine whether mentoring had an impact on carer wellbeing and confidence in caring. Depth interviews were also undertaken with 11 purposively sampled carers to explore how carers experience and perceive the process and benefits of mentoring.
Results: Statistically significant improvements in carer anxiety (p < 0.001), depression (p < 0.001), quality of life (p = 0.02) and confidence in caring (p < 0.05 on all dimensions except one) were found. Depth interviews revealed that carers were very positive about mentoring and highlighted many benefits. Findings suggested emotional support, information provision, problem solving facilitation and gaining new perspectives may be mechanisms by which mentoring achieves positive outcomes. Mentor personal characteristics, experiences and training are possible facilitators of the process.
Conclusions: Carer mentoring services can be a valuable form of carer support that falls somewhere between formal and informal support. Adopting mixed methods permitted greater understanding of how mentoring may benefit carers and has implications for mentor recruitment and training. The fact that mentoring can be provided by volunteer mentors makes it an attractive, potentially cost-effective means of supporting carers.
BACKGROUND: Families/carers relinquishing the care of family members with a disability into the care of out-of-home respite facilities is an under-researched area in the disability field. With this in mind, the aim of this study was to explore the factors that lead to families relinquishing care, the potential early indicators that families are considering relinquishment; the factors that may prevent relinquishment and the outcomes for families/carers after relinquishment occurs. METHOD: Thirty-two client files (of individuals for whom families have relinquished their care in a defined 12-month period) were reviewed for information around their relinquishment into out-of-home respite care facilities for an extended stay. Staff members involved with these families (a total of 17) were also interviewed to provide more information. RESULTS: A thematic analysis of the results found that the factors that led to relinquishment could be categorised into: (1) characteristics inherent to the individual with intellectual disability; (2) characteristics inherent to the family/carer; and (3) characteristics associated with the support context that the carer/family is currently experiencing. It was also found that families'/carers' experienced positive outcomes after relinquishment had occurred; however, feelings of guilt and mourning were initially felt. CONCLUSIONS: Extra supports (e.g. increased respite care, planning for movement of the family member into out-of-home permanent accommodation and case management) and positive interventions such as parent training were highlighted as potential strategies to achieve more lasting benefits from short-stay out-of-home respite care.
This strategy has been developed around six key areas of concern, which were identified during a period of consultation with carers. These include the identification of those acting in a caring role, information for carers, support services, the special needs of young carers, training and employment. It is estimated that there are over 185,000 unpaid carers in Northern Ireland. Their contribution to health and social care cannot be overstated. This strategy sets out a vision of what needs to be done to provide those carers with the practical support they want and need to allow them to continue caring and, at the same time, to have as much access as possible to the same opportunities that the rest of us enjoy.
Purpose. To summarize qualitative studies from the last decade that focus on experiences of caring for stroke survivors and to describe challenges, satisfactions and coping strategies.
Methods. A systematic review of qualitative studies identified from English language medicine, nursing and psychology databases from 1996–2006 was undertaken.
Results. Seventeen qualitative studies fitting the inclusion and exclusion criteria, mostly from the USA, were identified. All used carer interviews. These studies corroborate the quantitative research, commonly describing difficulties including emotional responses, uncertainty and associated information and training needs. However, compared with quantitative research, qualitative studies provide a more detailed, complete picture of carers' experiences and identify additional areas including role and relationship changes, positive outcomes and coping strategies.
Conclusions. Qualitative studies add significantly to our understanding of carers' experiences. Caring for stroke survivors is often challenging but focusing on the difficulties and not drawing attention to successful management strategies and satisfaction reported by carers, limits understanding and reduces the chances of providing appropriate support. Future qualitative research should consider the implications of the timing of collection more carefully and should move away from simple content or thematic analysis which tends to emphasize similarities amongst carers and should now focus on understanding carer diversity. Acknowledging this diversity should maximize the chances of providing appropriate support.
Reports on an evaluation of the efforts of the Royal United Hospital (RUH) Bath to improve the support offered to people with dementia and their family carers. The intervention included the recruitment of three part-time dementia coordinators, a seven-day older adult mental health liaison service with nurses and a psychiatrist, additional staff training and an increased emphasis on arts and music in the wards. An evaluation survey, carried out by RICE (The Research Institute for the Care of Older People), then explored the carers' experiences of the quality of care of the person with dementia received from admission to discharge while an inpatient at the hospital. Overall 181 carers completed the survey from a sample across five wards (22 of these were in the pre-implementation group). The main areas carers were impressed with were: the caring attitude of staff, the general care received and flexible visiting times. The main areas carers were displeased with were staffing levels, staff having limited time, lack of communication, wanting to speak to a doctor more and the need for better planning and discharge. It is noted that only a small number of the surveys could be collected before the intervention began, but the surveys did indicate an improvement in care. (Original abstract)
The purpose of this guidance is to secure the implementation of the Adult Autism Strategy “Fulfilling and Rewarding Lives: The Strategy for Adults with Autism in England” 2010 as updated by Think Autism (2014) by giving guidance to Local Authorities, NHS Foundation Trusts and NHS bodies. The guidance focuses on the areas which section 2 of the Autism Act 20097 requires to be addressed, in each case identifying what Local Authorities, Foundation Trusts and NHS bodies are already under a duty to do under legislation, what they are expected to do under other existing guidance, and what they should do under this guidance. Local Authorities, NHS bodies and Foundation Trusts should already be doing much of what is expected of them in complying with this guidance as they should have followed the 2010 statutory guidance (which this guidance builds on and replaces).
It is possible that effective information-sharing strategies to improve the quality of care can be developed. Service users, carers and professionals should all be involved in generating such strategies. The ideal information-sharing strategy can be tailored to individuals' needs and requires professionals to make carefully weighted judgements. Professionals need training to help them to understand the roles of carers and to work with carers effectively. Training should be accredited in order to encourage attendance. Fear about breaching patient confidentiality has frequently created a barrier to effective involvement of carers in mental health care.
Depression is a common and chronic illness affecting nearly one in five people in their lifetime. The main responsibility for people suffering from depression falls to their carers. Research indicates that carers find the burden of caring for a family member enormous and often feel isolated with this burden (Highet et al, 2004). This paper presents an evaluation of a six‐week course held in Leeds, based on the principles of cognitive behavioural therapy and specifically aimed for carers. Cognitive behaviour therapy (CBT) is a recognised intervention technique for people with mental distress (Beck, 1976; Beck et al, 1979). The approach was used with carers to help them to become aware of their thoughts, feelings, behaviour and physical reactions to certain stressful situations when caring for a family member. The approach was introduced within the safety of a supportive group situation. Average attendance was 84% and feedback suggested that this approach was beneficial to carers in coping with the stress of the carer role.
When caring for an older relative with dementia, family members experience considerable distress and burden. Literature reviews show that supportive group interventions for these caregivers have significant positive effects on improving their distress and quality of life, but not consistent and conclusive. Limited research is found in Asian populations. This study tested the effectiveness of a 12-session bi-weekly mutual support group program for Chinese family caregivers of a relative with dementia in Hong Kong, when compared with standard family support service. An experimental study with pre- and post-test, parallel groups design was conducted. A randomized sample of 78 family caregivers, 39 in each of the experimental and control groups, from one regional dementia care center participated in the study. A protocol was specifically designed by an advanced practice nurse to guide the mutual support group process and the facilitator and peer leader training, based on evidence from the literature on family support group intervention in Western countries. The results of ANOVA tests indicated that the mutual support group participants had significantly greater improvements in distress levels and quality of life than the control group. There were only mild changes in the demands for mental health services in both groups at post-test. These findings support the effectiveness of mutual support groups to offer psychosocial support to Chinese family caregivers in dementia care beyond routine community mental health care.
As individuals with significant functional deficits are discharged earlier from the hospital, health care professionals are challenged to develop cost-effective intervention programmes that will assist family members to manage caregiving problems in the home. The literature suggests that social problem-solving can positively influence the physical and psychological well-being of individuals. This paper describes a social problem-solving training procedure provided primarily by telephone to assist family caregivers to manage caregiving issues in the home. (C) 2001 Lippincott Williams & Wilkins.
To identify and evaluate the reliability and quality of educational materials provided to individuals with schizophrenia and their carers. Materials used by mental health professionals working in community and in-patient settings were collated. Two independent raters used the ‘Discern’ questionnaire to assess the publications.
Fifteen documents were identified, but only 11 were suitable for evaluation. Interrater reliability of ratings using the Discern tool was highly significant. No educational package scored maximum marks, but four scored in the good quality range. About a fifth of the materials in widespread use were assessed as of poor quality.
The use of a rating instrument to assess the quality of educational publications appears to be a reliable and acceptable way to identify the strengths and weaknesses of widely available materials. Staff can use these data to assess the quality of their preferred materials against other publications and make an informed selection.
Purpose – The purpose of this paper is to establish the outcome of wheelchair prescription procedures for carers supporting a wheelchair user with special reference to their health and well‐being.
Design/methodology/approach – A postal questionnaire was used in conjunction with analysis of policy and practice documents in wheelchair prescription and carers' needs.
Findings – The majority of carers reported a wide range of health problems. A relationship between wheel chair type and reported carer pain was noted. Only a minority of carers considered that they had received an adequate carer's assessment, and few had received training in wheel chair management; such training where it had been carried out, led to reduced reports of pain.
Research limitations/implications – The study invites more detailed analysis of both the conditions under which wheelchair prescribing takes place and the impact of assessment and training on carers' health. The study is based on a relatively small, local sample and a more extensive study is called for.
Practical implications – Procedures for prescription of wheelchairs should be reviewed and steps taken to ensure that adequate consideration is given to the health needs of carers and the circumstances under which they will push the wheelchair.
Social implications – More thoughtful prescription of wheelchairs will lead to increased health of carers improving their quality of life and reduce demands on health services and the accompanying risk to their capacity to carry on caring.
Originality/value – The study addresses a neglected topic, which clearly identifies the consequences of inadequate prescription of wheelchairs for the health of carers, a topic generally neglected in the literature.
The aim of this study was to explore by whom, how, and when discussions about prognosis and end-of-life issues should be initiated with terminally ill patients, and the context in which these issues can be optimally discussed. Focus groups and individual interviews were conducted with 19 palliative care (PC) patients, 24 carers, and 22 PC health professionals (HPs). Participants had disparate views regarding by whom and when such discussions should be initiated, although a similar range of perspectives was expressed by all participant groups. Four main approaches were identified: wait for the patient/carer to raise the topic; HPs to offer all PC patients and their carers the opportunity to discuss the future (preferred by the majority of participants); HPs to initiate the discussion when the patient/family need to know; or HPs to initiate the discussion when the patient/family seem ready. Four themes emerged regarding the optimal context of the discussion: importance of the relationship with HP, clarifying the patient/carers' understanding and how much detail they want to know, negotiating who should be present during the discussion, and who should deliver the information. Initiating prognostic discussions with terminally ill patients requires considerable skill and sensitivity. Communication skills training for HPs may be required to optimize such discussions.
Contains a general introduction to the topic and drawing on a range of current initiatives, pointers towards good practice in relation to each of the components of effective involvement. A range of evaluation tools are offered which may be useful in charting progress and identifying the next steps to be taken.
Little research has examined the extent to which active ageing is facilitated by family and nonfamilial support persons of older adults with intellectual disabilities. This study explores the role played by key unpaid carers/support persons of older adults with lifelong intellectual disabilities in facilitating “active ageing.” All key social network members conceived active ageing to mean ongoing activity. Family and extended family members were found to play a crucial role in facilitating independent living and providing opportunities for recreational pursuits for those living in group homes. Members of religious organizations and group home staff provided the same types of opportunities where family support was absent. The findings suggest the need for improvements in resource provision, staff training, and group home policy and building design.
Overall life expectancy for women with intellectual disabilities (ID) is now significantly extended, and many will live long enough to experience menopause. Little is known about how carers support women with ID through this important stage in their lives. This study investigated carer knowledge of how menopause affects women with ID under their care and how they may help them to cope with it. One-to-one interviews were undertaken with 69 carers (7 male/62 female) from a range of backgrounds, all with current responsibility for the care of one or more pre-, peri-, and/or postmenopausal women with ID. Carers reported difficulty in disentangling the psychological and physical consequences of the menopause from behaviors and symptoms arising from other causes. There was general recognition of the transitional importance of menopause and a widespread acknowledgment of the resilience that many women with ID show in coping with it. However, carers emphasized the need for health resources to be better tailored to the women's needs and for more relevant health education training for staff. The authors conclude that additional and new demands are placed on service provision as women with ID live longer. An increased awareness of health issues relating to menopause is needed, as are more appropriate and readily available relevant health education materials for women with ID in middle age.
For the past decade nurse education has incorporated service user and carer perspectives into their programme and research agendas. Moving from rhetoric to the reality of embedding adult service user and carer knowledge into nurse education this paper discusses how this good practice was extended to young people under the age of 18. Globally, the mental health of young people is coming under the spotlight and based on this two “World Café” events focusing on young people and their mental well being were organised. Targeting a multi-agency audience the aim was to develop a partnership consortium, bringing together local organisations involved in promoting the mental well being of young people. This paper reports on the first World Café, led by two local young people's groups, ‘Florescent Adolescent’ and ‘Vocal’. Following the presentations four important areas were identified (1) Inclusive rather than exclusive (2) Crystal ball gazing — young people's futures (3) A hole in the net — catching young people at the right time (4) Exposing the hidden agenda. The day resulted in three collaborative research proposals and the realisation that young people need opportunity to participate through utilising more innovative ways of engaging with the professional adult world.
Objective: A systematic review of the effectiveness of interventions for adult family carers of people with stroke, and an exploratory examination of the relationship between the conceptual basis of these interventions and their effectiveness.
Data sources: Seventeen electronic databases and grey literature sources were searched, including ASSIA, BNI, Cochrane Library, CINAHL, EMBASE, MEDLINE, PsycINFO, Social Science Citation Index and the Science Citation Index, HMIC and the National Research Register. Authors of unpublished material were contacted for data and additional publications. Reference and citation tracking was performed on included publications.
Review methods: Inclusion criteria: randomized controlled trials of interventions aimed primarily at adult family carers of people post stroke; carers were the primary sample; primary outcomes reported were for carers. Two independent reviewers screened titles and abstracts to identify publications and extract data. Quality assessment was performed to weight study findings.
Results: Eight papers were found reporting on six complex, generally heterogeneous, interventions: caregiver training; education and counselling; social problem-solving partnerships, delivered principally by telephone; a psycho-educational telephone support group; a nurse-led support and education programme; and a support programme, delivered either to groups in hospital or individuals during home visits. Half of the interventions were based on stress-coping theories; the remainder did not identify a conceptual basis for the intervention.
Conclusions: Some benefits were reported for all interventions, although trials were generally of low quality, preventing firm conclusions being drawn. The presence of a conceptual basis for interventions does not appear to influence effectiveness.
This training programme and resource pack, produced by the University of Nottingham and funded by Marie Curie and Dimbleby Cancer Care, are intended to offer basic knowledge and skills for those who provide support for informal carers (usually family members or friends) who are providing home-based end of life care. There are seven sessions in the programme, which can be facilitated over a one-day course; each session contains extra content and exercises that can be used to expand the programme. The sessions are: introduction and welcome; caring and being cared for; supporting in practice; being a safe supporter; the principles of supporting; boundaries and exit strategies; and ongoing learning and development. The training pack comprises: a facilitator handbook; a trainee workbook; resources selected by bereaved carers; pre-course reading; a promotional poster template; and session slides.
User and carer participation in health care is central to care planning and delivery. From an educational perspective, their input is beneficial in terms of enhancing the quality of the education process. The study reported in this paper explored the experiences of user and carer participation in nurse education from the perspective of the key stakeholders involved in the process. By pinpointing key issues of concern for participants, the study aims to help inform the ongoing development of practice in this area.
This study explored the experiences of user and carer participation in nurse education from the perspective of the key stakeholders involved in the process. By pinpointing key issues of concern for participants, the study aims to help inform the ongoing development of practice in this area.
This article describes and analyses public support for Swedish unpaid carers, now mandated by law, and also the support that they desire, using surveys conducted in 2008, 2009, and later. Few carers helping someone in a different household – the large majority of the carers – received any support aimed directly at them, such as access to support groups, training, relief service, or financial support. Yet, most carers did not desire any support for themselves. They mostly wanted public services for the cared-for person, all of which may also indirectly support carers. Intra-household carers – about a tenth of all carers – have vastly larger care commitments than other carers. Some of them desire support for themselves, usually relief services of financial support. Three out of 10 of these carers used any public support, despite the new (2009) legislation that only a minority of carers know about. There is a wide gap between policies and their implementation, but also some reluctance among carers to use public support for themselves. The relationship between carers and the state is unclear in Sweden and this reflects on the aims and the forms of support. Stereotypes about ‘typical’ carers may have impeded adequate forms of support.
The academic literature contains surprisingly little information regarding the design and conduct of surveys dealing with sensitive social issues. The present paper is an attempt to help fill that gap so that other researchers conducting similar projects can learn from our experience. In particular, I focus on the various challenges we encountered in carrying out a computer assisted telephone interview (CATI) survey of informal carers in Australia, our responses to these challenges and our learnings from this endeavour. In the present article, I discuss the following issues: cost-efficient sampling for small numbers; opt-out versus opt-in approaches to respondent participation; status errors in administrative data; reducing respondent refusals; interviewing non-English speakers; questionnaire topic order; carers who care for more than one person; and interviewer training, including interviewer and/or respondent distress. The conclusions were: (1) carers are generally willing and able to answer quite sensitive questions around caring, despite the fact that they may become distressed in doing so; (2) carers are willing to answer a rather long (25 min) telephone survey; (3) thorough interviewer training is critically important, with an emphasis on achieving a balance between sensitivity and efficiency; and (4) respondents should be given the opportunity at the end of the interview to make additional comments and to provide their contact details should they desire follow up from an appropriate authority.
In this article, we compare accounts given by young carers and specialist support workers about the riskiness of becoming a carer relatively early in life. We argue that since the mid-1990s, the policy response has problematised the comparatively early adoption of a caring role as a risk factor for future personal development. This temporal issue has become societally organised around concern about NEETs (young adults not in education, employment or training). Such a concern is predicated on cultural assumptions, now being undermined in response to economic crisis, about the existence of a critical age for transition to adulthood, successful navigation of which requires a time-limited period of personal freedom. Our findings suggest that, whereas support workers mostly see young caring in terms of risks to future prospects, young carers themselves identify not only current stresses, but also personal gains, from their experiences. Instead of categorising the timing of their caring as a source of risk, young carer respondents questioned service shortcomings which they felt made it harder for them to cope in the present, particularly inadequate social service support for relatives with disabilities and insensitivities in the education system. They did not see service providers as helping them to manage their futures. We locate this tension in risk social science debates about individualisation, transition to adulthood in late-modern society and risk management for those deemed vulnerable.
This study examines what support services are offered to informal caregivers and whether the support is aimed directly or indirectly at the carers. Data were collected by means of two mail questionnaires in a Swedish county. The first questionnaire was aimed at each municipality in the region. The second questionnaire was sent to a random sample of 284 voluntary organizations in the region. Only the municipalities proved to have relief services, day care centres and two forms of payment for carers. The voluntary organisations' support for carers was focused on support groups and training as well as services for elderly care recipients. The results indicated that the support services for carers were both direct and indirect and that the municipalities and the voluntary organisations largely offer different kinds of support.
This briefing provides an overview of the research literature on the barriers currently facing black and minority ethnic (BME) people in accessing dementia care services. It also looks at some of the ways in which services can become better at responding to the needs of (BME) people in their local area. The briefing begins by outlining the main issues and why it is important to address existing barriers. It then summarises the findings from the research, which cover: prevention, early intervention and diagnosis; life history and dementia; awareness and stigma; improving access to information; carers; workforce development and training; specialist and generic services. Implications for the main stakeholders are provided. The briefing is based primarily on UK research.
This report is the Government's Annual Report to Parliament which gives our reply to the Learning Disability Task Force report 'Making Things Happen'. Reports on the work that has been done since the White Paper 'Valuing People:A New Strategy for Learning Disability for the 21st Century' launched in March 2001.
Purpose – The purpose of this study is to evaluate the effectiveness of user and carer involvement in a new one‐year postgraduate certificate course for Mental Health Officers (MHOs) in Scotland, covering the first year of its delivery (2009‐2010).
Design/methodology/approach – This was explored in two ways: first, by assessing the level of user and carer involvement against a modified framework; and second, by measuring students' confidence in working with people with mental health issues over the duration of the course, and through interviews with students and service users and documentary analysis.
Findings – The findings indicate user and carer “influence” and “partnership” over the design and delivery of the learning, teaching and assessment strategy, but no degree of “control” over any aspect of the course. Teaching provided by users and carers was associated with marked improvement in students' confidence in engaging with and upholding the rights of users and carers in the context of the MHO role. Students reported increased awareness of the lived reality of compulsory treatment. Users reported benefits from feeling they had helped facilitate future good practice.
Research limitations/implications – The research design does not allow for causal links to be made between increases in student confidence and user and carer involvement.
Practical implications – The study identified substantial barriers to effective user and carer involvement but confirmed its potential as a positive change agent for post‐qualifying social work education.
Originality/value – This study contributes to the evidence base by demonstrating the value of service user and carer involvement in post qualifying social work education.
This paper reports on some of the findings from a collaborative study funded by the Big Lottery and led by Crossroads Caring for Carers about carers for people with mental health problems. The protection and use of information in mental health are firmly rooted in ethics and professional codes, law and policy, as well as values and professional practice. While government initiatives have attempted to augment the role and rights of carers, policy guidance involving information sharing between professionals and carers has failed to deal with the practical dilemmas of patient confidentiality. Professional codes and training neither explore nor develop the moral and ethical ground that stands between the service user's need for privacy and the carer's need for information. Policy and training guidance on confidentiality is scattered, ambiguous, confusing for professionals and inconsistent. There is uncertainty in practice about the information that professionals may share, and many professionals do not take into account carers’ rights, not least to basic information to help them care for service users. ‘Confidentiality smokescreens’ may sometimes lead to information being withheld from carers. Professionals sometimes find it easier and safer to say nothing. In order to explore these issues from the perspectives of professionals, 65 participants were interviewed. The sample included directors and senior staff from the health, social care and voluntary sectors. Respondents were asked to comment at length on their understanding of confidentiality and information sharing with carers. Findings highlight confidentiality smokescreens that erect barriers that limit effective information sharing; issues involving confidentiality, risk management and carers in crisis; examples of good practice; and the need for the training of professionals on confidentiality issues and the rights of carers. This paper explores the challenge of confidentiality smokescreens from the perspective of professionals, and draws out implications for professional practice and training.
The authors reflect on the importance of learning and development for transforming dementia and end-of-life care. Topics discussed include dependency of quality of dementia care on care providers including registered practitioners, support staff and informal carers, focus on person-centred care and building the leadership skills and confidence to influence care given by diverse and multiprofessional team.
The need for an inspection of Social Care Support Services for Carers of Older People in Northern Ireland was identified during the consultation on the former Social Services Inspectorate's inspection programme for 2002-2005. The inspection continued into 2006. The reports arising from the inspection identify many areas of good practice and good quality work undertaken by highly motivated staff. The reports have sought to identify both what is working well and where improvements are still needed. The reports, with their recommendations to Boards and Trusts and their partner Agencies, together with the draft standards and other initiatives from DHSSPS, provide a clear and coherent framework for the future provision of robust, high quality support for carers. Support for carers is a central policy objective for the Department. The final Standards for Adult Social Care Support Services for Carers were issued in July 2008 and will complement other published standards with regard to practice and social care service provision. The standards will be of use to Commissioners and Providers of social care support services for carers; social care workers; regulatory and training providers and most importantly to carers and their representative groups to inform them of what they can and should reasonably expect from social care support services and from the organisations and practitioners commissioning and providing them.
This article looks at results of a government-commissioned study in Great Britain concerning kin carers. It found that despite suffering more financial hardship, many kin carers are paid less than unrelated foster carers. They are more likely to receive little or no social work support, have no family placement worker and no access to training. It warns that special guardianship orders could similarly be used by local authorities to restrict services for kin carers.
In 2004 the Royal College of Psychiatrists made it clear that it was committed to increasing the involvement of service users and carers throughout psychiatric education. This has been mandatory since June 2005 and it has been a compulsory aspect of psychiatric training for schemes to demonstrate a meaningful involvement of users and carers in the training of psychiatrists.
The involvement of service users and carers in the education of psychiatric trainees is an important aspect of modern medical training both at undergraduate and postgraduate levels Although the majority of trainees embrace this concept, many have expressed anxieties that need to be addressed if they are to have confidence in the role of users/carers as educators. One way to allay trainees’ anxieties would be to incorporate structured sessions by service users/carers in in-house academic programmes, which has already been initiated in some training schemes. However, formal training of service users/carers would be vital, before their involvement as observers or assessors.
This article discusses the aims and objectives of the new working-age agency, Jobcentre Plus, and the challenges faced by staff in the former Employment Service and Benefits Agency in delivering on its vision of a work-focused service designed to reach 'hard to help' groups. It looks at the training needs of staff involved in the new service, and how the Jobcentre Plus Stakeholder Forum contributed to identifying them. It considers some of the early successes and problems in this process, and then goes on to explore the needs of one particular client group, carers. Finally, it describes an innovative partnership project, led by Carers UK, that will support Jobcentre Plus in meeting those needs.
The proportion of disabled stroke survivors is increasing. These people may experience loss of sensation that negatively impacts on performance and participation in daily activities. The value of adopting active approaches to rehabilitation is growing; however, high costs and demand over an extended period of time impose limits on therapist-based application. Informal carers and family members are a potential, low-cost resource for expanding the scope of rehabilitation across environments and over extended time periods. We systematically developed and established the effectiveness of an approach to retraining lost sensation and function in the hand that has positive outcomes in relation to the ability to feel everyday textures and objects and use the hand in daily tasks. The purpose of this study was to investigate whether family members, as surrogate therapists, are able to effectively conduct the sensory training program in home environments. Three single-case quasi-experiments were conducted in which stroke survivors' spouses implemented the training program across touch or limb position sensations. We found positive treatment effects in all cases. These findings indicate that selected surrogate therapists (spouses) can successfully implement a program of sensory retraining when provided 2 to 3 hours of training and supervision by a qualified therapist.
Background: despite evidence that needs assessment of older people can improve survival and function when linked to effective long‐term management, there is no structured needs assessment tool in widespread use. The Camberwell Assessment of Need for the Elderly is a new tool not previously evaluated in primary care. It includes the views of patients, carers and health professionals, enabling a direct comparison of their perspectives.
Aim: to conduct a feasibility study of Camberwell Assessment of Need for the Elderly in primary care and to compare the needs identified by patients, carers and health professionals.
Methods: we selected a random sample of 1:20 of all people aged 75 and over from four general practices in inner‐city and suburban north‐west London. We interviewed the patients, their informal carers and lead health professionals using the Camberwell Assessment of Need for the Elderly schedule.
Results: 55 (65.5%) of 84 patients, 15 (88.2%) of 17 carers and all of 55 health professionals completed interviews. The patients' three most frequently identified unmet needs were with ‘eyesight/hearing’, ‘psychological distress’ and ‘incontinence’. The carers' three most frequently identified unmet needs were with ‘mobility’, ‘eyesight/hearing’ and ‘accommodation’ and the health professionals' were with ‘daytime activities’, ‘accommodation’ and ‘mobility’. κ tests comparing patient and health professional assessments showed poor or fair agreement with 18 of the 24 variables and moderate or good agreement with six. None showed very good agreement.
Conclusion: the Camberwell Assessment of Need for the Elderly schedule is feasible to use in primary care and can identify perceived needs not previously known about by health professionals. A shorter version of Camberwell Assessment of Need for the Elderly focusing on areas of poor agreement and high levels of need might be useful in the assessment of needs in older people in primary care.
To tackle the problem of training the careers of senior citizens numerous educational options may be attempted. However, the emerging complex puzzle of the diversity of training needs for the aforementioned trainee group, consisting of a mixture of formal and informal careers, calls for a careful and perhaps more radical than the usually attempted approach. To this extent, this paper describes elements of the innovative efforts followed upon the training design of the DISCOVER EU project. Specifically, simulations of virtual patients in Second Life are exploited in conjunction with educational components and objects in semantically extended e-learning environments, in an attempt to make more realistic everyday training cases and diverse topic, content rich approaches. The whole endeavor is presented in view of the existing limitations to elderly careers' training and is soon to lend itself to a rigorous pilot phase in Greece. Planned evaluation sessions are envisaged to certify successes, to inform for any required improvements but also to identify pitfalls.
This publication provides an overview of debates and reports on education, services for children and training in Scotland tabled in the House of Commons and House of Lords for the period March 3 to 7, 2014. Member of Parliament Linda Fabiani questions Minister for Youth Employment Angela Constance on various issues including the publication of the guidance on the administration of education maintenance allowance and the care.fair.share campaign for young carers.
Psychotropic medications are a treatment commonly used for people with learning disabilities. Legislation and guidance suggest that, for a person to give informed consent to treatment, they must have knowledge of the potential treatment. This study of 21 people with learning disabilities, and their carers and prescribers, living in four different regions of England, suggests that few of the people with learning disabilities were fully informed about their treatment. Many of their carers said that although they knew how to administer the medication, they knew little about why the person was taking it and what the implications might be. Despite this, people with learning disabilities made the general assumption that carers would, or should, know everything about their medication. The current provision of information to people with learning disabilities and carers was found to be poor. Four key strategies identified in supporting people with learning disabilities in obtaining information about medication were spending more time providing and reiterating key information, providing accurate, up‐to‐date, accessible information about medications, providing training for carers in wider aspects of medication usage, and tailoring information to each person's individual needs.
Including informal carers within social work training programmes is generally regarded positively. Such approval is aligned with the view that users of welfare services possess valuable, even unique perspectives relevant to professional education and training. This article identifies three models incorporating the experience of carers into social work training and draws attention to aspects of good practice. It questions whether the extension of training in this area adequately addresses the problematic positions of carers' diverse circumstances since they do not fit into simple analyses of social constructionism or oppression.
To date, little is known about carers’ experience of using online services and information. Data are reported from the Carers Online national postal survey of 3,014 adult carers and from an assisted access study involving 60 other adults who had been given training and cost-free Internet access at home. Half of the survey respondents reported having used the Internet on at least one occasion for a range of purposes related to both caring and other aspects of their lives. Major barriers to use identified by both users and non-users included lack of access to equipment and the Internet, difficulties with equipment and systems, cost, limitations on time, and lack of interest and skill. Fourteen per cent of the whole sample said that nothing would encourage them to use the Internet. All of the assisted access group used the Internet for a similarly wide range of purposes. Key benefits identified included convenience, flexibility, speed and range of information available, while problems with equipment and systems and time constraints were major barriers to effective Internet use. Findings suggest that while direct Internet access has some benefits for some carers, it should currently be only one of a range of ways of meeting their information needs.
This paper describes the impact that learning about recovery has on mental health carers, exploring the implications of this research for UK social work and beyond. A steering group co-produced a training intervention on recovery that was delivered by the first author and a carer, both with experiences of recovery, to eleven carers. Mainly qualitative data, with supplementary socio-demographic data, were collected to evaluate the impact of this training. Thematic analysis was applied to the data. Findings suggest that being more ‘recovery-aware’ gives carers increased hope and optimism for the future. Awareness of the impact of caring upon the service user's life helps carers to promote recovery in their relative, and gain confidence in their own expertise-by-caring. Professional care is fundamental to recovery but needs to build on a partnership model. The carers evaluated the training as helpful, and valued its authenticity in being led by trainers with experience of recovery. Carers' expectations of professional practice are highlighted, with different approaches discussed that support effective carer involvement in their relative's care. Recognition of carers' expertise-by-caring demands a new approach to mental health care, with significant implications for British social work practice.
Purpose – It is generally agreed that carers in mental health care play a vital role in helping people to maintain their place in the community and reducing the time clients spend in hospital or residential settings. The purpose of this paper is to develop a conceptual approach to involving carers in higher education by acknowledging their contribution to improving practice and identify the impact upon student learning in mental health and social care professions.
Design/methodology/approach – A brief review of the policy and literature on involving carers in mental health services and education explored the historical and current influences upon practice. This was then applied to the experience of the authors when teaching nursing and social work students in a higher educational setting and evaluated as developing outcomes in carer involvement practice.
Findings – Relationships between carers and students in health and social care may be created in higher education settings that can develop supportive, informative and recovery‐focused care in practice. Creating such relationships in the higher educational setting helps students to prepare for developing relationships with carers in practice.
Originality/value – Involving carers in education may improve outcomes in recovery for the client and carer experience and the development of professional and self awareness skills in students. Developing involvement practices in higher education begins the process early in the experience of health and social care students, providing a safe environment in which to master such skills.
Dementia is a term for a range of progressive, terminal organic brain diseases. Dementia affects over 560,000 people in England and costs some £14 billion a year. Parallels can be drawn between attitudes towards dementia now and cancer in the 1950s, when there were few treatments and patients were commonly not told the diagnosis for fear of distress. There are also stigmas associated with mental health and older people's issues, which present barriers to improving awareness, understanding and openness about dementia. Despite its significant human and financial impact, the Department has not given dementia the same priority status as cancer and coronary heart disease. As a result the NHS has not afforded dementia the same focus for improvement. Large numbers of people do not receive a formal diagnosis for a variety of reasons including GPs' lack of knowledge and/or confidence to make a diagnosis, fear of dementia, and a perception amongst the public and professionals that little can be done to help people with dementia.
There are some useful tips for people considering reporting a concern, and it is helpful to compare whistle-blowing itself with the daily business of raising concerns and giving feedback. Those appearing in the scenarios were service users and staff. The scenarios could encourage further discussion in training groups. This CD Rom may persuade a new carer to report possible abuse.
Offers details about a little-known federal program aimed at helping individuals who provide long-term care for aged relatives or loved ones called the National Family Caregiver Support Program. Budget appropriated to the program, which offers respite care, training in home-care skills, and counseling and referrals to help caregivers navigate the bureaucracy of the United States long-term-care system; Inadequacy of the program in terms of funding and services offered; Number of caregivers the program expects to be servicing with the next couple of years, according to the Administration on Aging, the governmental agency that administers the program; Where individuals can get more information about the program.
Caring with Confidence fund to be transferred to training and support projects. [Journal abstract]
The majority of people would prefer to die at home if assured of high quality care and proper support for their families and informal carers. Home-care workers play a vital role in enabling patients to be cared for in their own homes; however, there is a lack of research on their role, focusing specifically on palliative and end-of-life care. A broad literature search was undertaken as part of a research study to explore the role of home-care workers in palliative and end-of-life care in the community. Key questions for the review included: exploring the role of home-care workers; factors that affect this role and examining training and support needs of home-care workers in providing palliative: and end-of-life care in the community. Positive aspects of their contribution were identified in terms of providing physical and social support, and having a key role to play in caring for patients at home. However, several studies highlighted negative aspects of the role, including limited availability of services, lack of continuity of care, time constraints, lack of flexibility and poor quality of communication with other services.
Question: Is training informal carers of people who have had a stroke cost-effective?
Study design: Single blind randomised controlled trial.
Main results: Carer training did not affect quality–adjusted life years (QALYs) lost over one year (QALYs: untrained carers 0.94 at baseline to 0.90 at 1 year, trained carers 0.94 at baseline to 0.91 at 1 year, between group difference reported non-significant). Carer training reduced patients’ initial hospital stay (mean stay 30.8 days with training v 43.2 days with no training; mean difference –12.4 days, 95% CI –19.5 to −5.6). Carer training reduced the total cost of patient care in the year following the stroke, mostly due to reducing the initial hospital stay (see Results table).
Authors’ conclusions: Training informal carers of stroke patients significantly reduces health and social care costs over the year following the stroke. This difference was mostly attributable to a reduced hospital stay among patients whose carers had received training.
The carers' strategy sets out the Government's short-term agenda and long-term vision for the future care and support of carers The carers' strategy is underpinned by £255 million to implement some immediate steps alongside with medium and long-term plans. New commitments in the carers’ strategy include: £150 million towards planned short breaks for carers; £38 million towards supporting carers to enter or re-enter the job market and £6 million towards improving support for young carers. Other schemes include the piloting of annual health checks for carers to help them stay well and training for GPs to recognise and support carers. A more integrated and personalised support service for carers will be offered through easily accessible information, targeted training for key professionals to support carers, and pilots to examine how the NHS can better support carers.
OBJECTIVES: Although the number of palliative home-care teams is increasing, knowledge of what patients and principal informal carers expect from a home-care team is sparse. We aimed to elucidate this as well as evaluate a home-care team.
PATIENTS AND METHODS: Individual semi-structured interviews with nine patients and six carers before receiving home care and 2-4 weeks after. In total, 26 interviews were conducted. Interviews were analysed with Template Analysis. Peer debriefing was performed.
MAIN RESULTS: Patients and carers expected the team members to have specialised knowledge in palliative care and to improve their sense of security being at home. They also expected respite for carers and activities for patients. They evaluated the team positively but missed respite for carers and 24-h on-call service.
CONCLUSIONS: Patients and carers found the home-care team essential to their sense of security being at home. Primary health care professionals must receive any necessary training outside patients' homes. Offering respite for carers and 24-h on-call service would be an improvement.
Service users, carers and academics describe participation in the social work degree at Anglia Ruskin University. It looks at the different ways that users and carers are involved in the course, the importance of the university providing appropriate training and support, the benefits students get from contact with users and carers and what users and carers gain from the experience. The film will be of interest to social work educators, social work students, service users and carers.
Having been diagnosed with dementia at the age of 70, Brian and his wife June now actively participate in planning dementia care services in Gloucestershire. The film illustrates the range of activities they are involved in - developing a 'Living Well Handbook', giving talks and helping shape training tools. It also highlights how commissioners, support organisations and carers all have a role to play in enabling the person with dementia to share their knowledge and experience for the benefit of others. Brian also believes that the person with dementia benefits too, through knowing that they are doing something worthwhile. This film was previously available under the title 'Participation in dementia care planning'.
The Foundation for People with Learning Disabilities has developed a training resource with a difference - family carers, who are also encouraged to deliver the training alongside professionals, developed the contents to train staff working in learning disability services.
Purpose – Through consultation with people living with dementia and carers, this paper aims to identify skills that patients and carers feel need to be developed in the workforce. This work is part of a project to develop competencies for the West Midlands dementia workforce.
Design/methodology/approach – People living with a dementia and carers were contacted through cafés, a carers' group and memory group, and two people contributed interviews to the analysis. All materials were analysed qualitatively using thematic analysis.
Findings – Feedback was received from 69 individuals. In total, six major themes were identified: knowledge about dementia, person centred care, communication, relationships, support and helping people engage in activities.
Originality/value – It is argued that people living with dementia and carers bring unique and valuable perspectives to an analysis of the skills of the dementia workforce, which grounds the required skills in the relationship between the worker and the person and family they are working with. This different emphasis needs to be considered and addressed throughout dementia training and education.
Caring for an elderly, frail or disabled person has effects on physical and psychological health as well as financial and social consequences. There are 6 million informal carers in the UK and the primary care team together with other community services is expected to provide the support they need. However, most primary care team members feel ill equipped to do so and there is very little evidence about which interventions are effective. This article reviews the reasons for this problem and suggests a strategy primary care team members could adopt until new evidence about effective strategies is available.
Service users, carers and academics describe participation in the social work degree at Leeds University. It looks at the different ways that users and carers are involved in the course, including teaching, role-playing activities, marking students' work and the selection process for students applying to on the course. It also looks at the importance of the university providing appropriate training and support, the benefits students get from contact with users and carers and what users and carers gain from the experience. The film will be of interest to social worker educators, students on social work courses, people working more broadly in co-production/participation and service users and carers.
This paper is a report of part of a study to investigate the burden experienced by families giving care to a relative with dementia, the consequences of care for the mental health of the primary caregiver and the strategies families use to cope with the care giving stressors. The cost of caring for people with dementia is enormous, both monetary and psychological. Partners, relatives and friends who take care of patients experience emotional, physical and financial stress, and care giving demands are central to decisions on patient institutionalisation. A volunteer sample of 172 caregiver/care recipient dyads participated in the study in Cyprus in 2004-2005. All patients were suffering from probable Alzheimer's type dementia and were recruited from neurology clinics. Data were collected using the Memory and Behaviour Problem Checklist, Burden Interview, Centre for Epidemiological Studies-Depression scale and Ways of Coping Questionnaire. The results showed that 68·02% of caregivers were highly burdened and 65% exhibited depressive symptoms. Burden was related to patient psychopathology and caregiver sex, income and level of education. There was no statistically significant difference in level of burden or depression when patients lived in the community or in institutions. High scores in the burden scale were associated with use of emotional-focused coping strategies, while less burdened relatives used more problem-solving approaches to care-giving demands. Conclusion. Caregivers, especially women, need individualized, specific training in how to understand and manage the behaviour of relatives with dementia and how to cope with their own feelings.
In 2007, the estimated cost of disease-related malnutrition in the UK was in excess of £13×109. At any point in time, only about 2% of over 3 million individuals at risk of malnutrition were in hospital, 5% in care homes and the remainder in the community (2–3% in sheltered housing). Some government statistics (England) grossly underestimated the prevalence of malnutrition on admission and discharge from hospital (1000–3000 annually between 1998 and 2008), which is less than 1% of the prevalence (about 3 million in 2007–2008) established by national surveys using criteria based on the ‘Malnutrition Universal Screening Tool’ (‘MUST’). The incidence of malnutrition-related deaths in hospitals, according to government statistics (242 deaths in England in 2007), was also <1% of an independent estimate, which was as high as 100 000/year. Recent healthcare policies have reduced the number of hospital and care home beds and encouraged care closer to home. Such policies have raised issues about education and training of the homecare workforce, including 6 million insufficiently supported informal carers (10% of the population), the commissioning process, and difficulties in implementing nutritional policies in a widely distributed population. The four devolved nations in the UK (England, Scotland, Northern Ireland and Wales) have developed their own healthcare polices to deal with malnutrition. These generally aim to span across all care settings and various government departments in a co-ordinated manner, but their effectiveness remains to be properly evaluated.
Objectives: In a multi-site population-based study in several middle-income countries, we aimed to investigate relative contributions of care arrangements and characteristics of carers and care recipients to strain among carers of people with dementia. Based on previous research, hypotheses focused on carer sex, care inputs, behavioural and psychological symptoms (BPSD) and socioeconomic status, together with potential buffering effects of informal support and employing paid carers.
Methods: In population-based catchment area surveys in 11 sites in Latin America, India and China, we analysed data collected from people with dementia and care needs, and their carers. Carer strain was assessed with the Zarit Burden Interview.
Results: With 673 care recipient/carer dyads interviewed (99% of those eligible), mean Zarit Burden Interview scores ranged between 17.1 and 27.9 by site. Women carers reported more strain than men. The most substantial correlates of carer strain were primary stressors BPSD, dementia severity, needs for care and time spent caring. Socioeconomic status was not associated with carer strain. Those cutting back on work experienced higher strain. There was tentative evidence for a protective effect of having additional informal or paid support.
Conclusions: Our findings underline the global impact of caring for a person with dementia and support the need for scaling up carer support, education and training. That giving up work to care was prevalent and associated with substantial increased strain emphasizes the economic impact of caring on the household. Carer benefits, disability benefits for people with dementia and respite care should all be considered. Copyright © 2012 John Wiley & Sons, Ltd.
Background: At a time when health and social care services in European countries are under pressure to contain or cut costs, informal carers are relied upon as the main providers of long-term care. However, still little is known about the availability of direct and indirect support for informal carers across the European Union.
Methods: Primary data collection in all EU member states was supplemented with an extensive review of the available literature.
Results: Various forms and levels of support have been implemented across Europe to facilitate the role of informal caregivers. Financial support is the most common type of support provided, followed by respite care and training. Most countries do not have a process in place to systematically identify informal carers and to assess their needs. Policies are often at an early stage of development and the breadth of support varies significantly across the EU.
Conclusions: Policy developments are uneven across the member states, with some countries having mechanisms in place to assess the needs and support informal carers while others are only starting to take an interest in developing support services. Given the unprecedented challenges posed by population ageing, further research and better data are needed to capture and monitor information on informal carers, to help design adequate support policies and eventually to evaluate their impact across the EU.
Purpose – This paper aims to describe the challenges and rewards of service user and carer involvement in clinical psychology training as experienced in one training centre.
Design/methodology/approach – After outlining the major challenges of involvement in higher education and in clinical psychology training, the paper describes the work carried out by the authors. Members of the service user and carer advisory group Salomons Advisory Group of Experts by Experience (SAGE) recount their experiences of working with them in clinical psychology and Increasing Access to Psychological Therapies (IAPT) training. The challenges of inclusion and specific approaches that are used to work with these are explored.
Findings – Members of SAGE have experienced their contributions to the work in positive ways. However, inclusion in this context requires everyone involved to fully acknowledge the social and historical barriers in order to work together to overcome them.
Practical implications – Some of the approaches to meeting the challenges of inclusion in doctoral level clinical training may be applicable in other places.
Social implications – In the authors' experience, true inclusion means openness to the authoritative voices of people not normally viewed as educators. A parallel question is the degree to which professionals feel safe to admit to service user experience or to draw upon other aspects of their personhood while working professionally. This may be crucial for successful partnership.
Originality/value – The authors are still on this journey of inclusion, and hope that by sharing some of their experiences of its complexities that they may help illuminate some elements of others' journeys.
Successive legislation has underscored the importance of assessments that are sensitive to the needs of carers and take into account their ability and willingness to continue caring. This paper synthesizes qualitative and quantitative findings from a continuing programme of carer-related research that began in 1993 and has continued in parallel with legislative changes. It considers the process and characteristics of carer assessment from the perspectives of carers for individuals with a range of health and social care needs, and practitioners. This paper explores the assessment of carer need over time and highlights the considerable and enduring gap between policy and practice. It considers practitioners’ reluctance to offer separate carer assessments, identifies confusion relating to the interpretation of eligibility criteria and documents the limited contribution of health service staff. The need for an evidence-based framework for good practice, that distinguishes between carer needs, service provision and carer outcomes, is highlighted. The paper concludes by identifying key changes that are necessary to promote future good practice, such as staff training and information strategies and the need for practitioners to engage with carers as partners in the care process.
Partnership work with service users and carers in social work education is a policy requirement, and it is also central to the anti-oppressive and rights-based values of social work. This paper reports research findings which are drawn from an educational context, but are also relevant to the wider field of health and social care. The research team undertook a systematic knowledge review using the Evidence for Policy and Practice Information and Coordinating Centre system, which had been used in health and education, but which had not previously been used in social care and social work. This involved an extensive search of electronic databases and rigorous screening to identify studies which had sufficient relevance to be subjected to detailed analysis. The research team also undertook a practice survey of the teaching, learning and assessment of partnership in prequalifying programmes in England, Wales and Northern Ireland. This involved three stages: a document search; telephone interviews; and focus groups held with students, academic staff, and service users and carers. Throughout the research process, the interdisciplinary team was advised and supported by a stakeholder group which consisted of service users and carers, students, and employer representatives. In the second part of the paper, subsequent discussion explores key findings from the research, including the disputed nature of the concept of partnership, models of partnership work within social work education and the dearth of research on partnership outcomes. Five related questions are identified as a means of interrogating the robustness of the research process and findings. The paper concludes by arguing for work to be done to theorise partnership, and to develop effective strategies for improving the quality of partnership working in education, and health and social care practice.
The objective of this review was to assess the effectiveness of interventions that assist caregivers to provide support for people living with dementia in the community. Adult caregivers who provide support for people with dementia living in the community (non‐institutional care). Interventions designed to support caregivers in their role such as skills training, education to assist in caring for a person living with dementia and support groups/programs. Interventions of formal approaches to care designed to support caregivers in their role, care planning, case management and specially designated members of the healthcare team – for example dementia nurse specialist or volunteers trained in caring for someone with dementia. This review considered any meta‐analyses, systematic reviews, randomised control trials, quasi‐experimental studies, cohort studies, case control studies and observational studies without control groups that addressed the effectiveness of interventions that assist caregivers to provide support for people living with dementia in the community.
This Bill is to make provision about life long learning and education for the employment of carers and to place duties on local authorities and health bodies to achieve this.
This article addresses some of the issues that need to be considered in implementing carer assessment in health and social service agencies. It is based on findings from three studies involving the use of the CARE (Caregivers’ Aspirations Realities and Expectations) Assessment Tool in Canada, a comprehensive psychosocial instrument. The first study, carried out between 1999 and 2001, was aimed at developing the CARE Tool, and had as one of its objectives to evaluate the feasibility of its implementation into ongoing practice. The second study, conducted between 2000 and 2003, was designed to evaluate the impact of using the CARE Tool, and also had an objective concerning implementation. A third study was undertaken in 2005–2006, in part, to gain more understanding of the barriers and outcomes of implementing carer assessment. All three studies used focus groups and individual interviews as the main data collection method. In all, this article is based on 13 focus groups and five individual interviews with home care professionals and 19 individual interviews with home care managers or supervisory staff, all having experience with carer assessment. Similar themes emerged from the thematic analyses of the data from all three projects. All studies point to the following as preconditions to successful implementation: clarification of carer status within policy and practice; making explicit agency philosophy with regard to the role and responsibilities of families in care and conceptions of carer assessment; and agency buy-in at all levels. Four themes emerged as issues for implementation: integration of the carer assessment tool with existing tools; ensuring training and ongoing supervision; work organisation and resources required for carer assessment; and logistical questions. It would appear essential that a clear rationale for moving towards carer assessment and its place in a global approach to long-term care and carers are essential to its implementation.
Carers and people with disabilities are two disadvantaged groups at risk of social exclusion. Work is an important route to social inclusion, but carers and people with disabilities are under-represented in the work force. The present paper reports key findings from a new study that evaluated People into Employment (PIE), a pilot employment project in the north-east of England designed to support people with disabilities, carers and former carers in gaining mainstream work. The study aimed to identify what clients, partner agencies and employers perceived to be PIE's most important services, its strengths and areas where there was scope for further development. The study collected quantitative and qualitative data at the mid-point and at the end of the project through two questionnaire surveys, and interviews with PIE clients, the project development officer, partner agencies and employers. Drawing on the ‘pathway model’, the findings show that PIE's interventions included mobilising, matching, mediating and supporting activities. Key ingredients in PIE's success include: tailor-made job-search activities and training; adjusting the pace at which people move towards sustained employment; recognising and responding to the differing needs of people with disabilities, carers and former carers; confidence boosting; accompanying clients to job interviews; good job matching; and ongoing practical and emotional support for both clients and employers. Rudimentary calculations suggest that the cost per job to the project is less than the cost per job for large national projects. Overall, these findings illustrate how access to employment via flexible job-search services geared up to the local labour market can successfully promote social inclusion for carers and people with disabilities.
This a template action plan can be used by local authorities and commissioning consortia working together under Health and Well-being Boards to improve care for those people with dementia who live in their own homes or in some other residential setting. The action plan includes: a commitment to providing leadership and resources at Board level in all participating organisations; a review of current services to identify services that could be made more dementia friendly; identification of four priorities for improved service provision for people with dementia and their carers; analysis and development of an approach to delivering training and support for people who care for people with dementia (carers, domiciliary care workers, care-home staff, etc). It is one of the resources that make up the Dementia Commissioning pack, which has been designed to help commissioners improve the quality of services and minimise unwarranted variation in service delivery.
Having been diagnosed with dementia at the age of 70, Brian and his wife June now actively participate in planning dementia care services in Gloucestershire. The film illustrates the range of activities they are involved in - developing a ‘Living Well Handbook’, giving talks and helping shape training tools. It also highlights how commissioners, support organisations and carers all have a role to play in enabling the person with dementia to share their knowledge and experience for the benefit of others. Brian also believes that the person with dementia benefits too, through knowing that they are doing something worthwhile. This film has now been reviewed and is available under the new title 'Dementia: participation in development of dementia care.'
Many people with dementia are cared for by family members, who will receive little advice or support. This article describes a course developed to help carers deal with frustrating and challenging behaviour. The course provides an overview of dementia, provides coping strategies for carers and introduces cares to mindfulness meditation to help them deal with stress.
OBJECTIVE: To quantify time caring, burden and health status in carers of stroke patients after discharge from rehabilitation; to identify the potentially modifiable sociodemographic and clinical characteristics associated with these outcomes. METHODS: Patients and carers prospectively interviewed 6 (n=71) and 12 (n=57) months after discharge. Relationships of carer and patient variables with burden, health status and time analysed by Gaussian and Poisson regression. RESULTS: Carers showed considerable burden at 6 and 12 months. Carers spent 4.6 and 3.6 hours per day assisting patients with daily activities at 6 and 12 months, respectively. Improved patient motor and cognitive function were associated with reductions of up to 20 minutes per day in time spent in daily activities. Better patient mental health and cognitive function were associated with better carer mental health. CONCLUSIONS: Potentially modifiable factors such as these may be able to be targeted by caregiver training, support and education programmes and outpatient therapy for patients.
Introduction The multi-faceted nature of Huntington's disease (HD) presents an argument for professionals to work in close collaboration with care givers in training and service provision. It is argued that there is a case to further develop services where part of the required care is jointly delivered by professionals and carers at the same clinical setting. This will enhance mutual understanding of the scientific and clinical aspects of HD together with specific individual needs. While professionals are at risk of overgeneralization and ‘stereotyping’ patients, carers find it difficult to disentangle HD from the ‘person’ behind it. It is also sometimes difficult for carers to utilize the outcome of various assessments therapeutically to benefit their loved ones and ‘lighten up’ their care giving burden. Our model Carers are usually invited to give formal talks to the team and trainees. A carers’ representative is always invited to service development meetings. That person does also act as a mediator seeking other carers’ views and communicating any concerns to managers. Similarly, our team members are regular attendees to the local support group meetings. This is not only for educational purposes but also to communicate and seek views on service changes. Team members did joint publications with carers. In the context of our inter-disciplinary clinic, a carer is always available at the waiting area explaining to patients what they should expect. She also provides information about the disorder and the role of the support group using a variety of posters and leaflets. Many carers take the opportunity to discuss their concerns; often raising different matters with ‘a fellow carer’ than with other team members. She will then attend part of the meeting after the clinic to feedback on how the clinic was run. Further, that carer spends time with trainees who find talking to a carer with a firsthand experience of HD quite enlightening. They are then able to appreciate the consequences of this disorder on family dynamics. They also have a better understanding of how scientific and clinical information be personalized to help patients and families. Conclusion The value of involving carers in shaping services and tailoring individual care plans as well as training junior clinicians cannot be over estimated.
AIM: To evaluate service users' and carers' views on the early intervention in psychosis service in relation to best-practice guidelines. METHOD: Both groups were sent a questionnaire on their experiences of care provided. RESULTS: The majority responded positively to many items, indicating they thought the team met best-practice guidance. Areas where guidelines were most closely adhered to were: helpfulness of initial contact for carers; service users' improved understanding of problems and ability to cope with difficulties; and satisfaction with amount and location of contact among both groups. Areas for further improvement included: promoting awareness and access to early intervention services; service-user involvement with care plans and promoting optimism for carers. CONCLUSION: Raising awareness, early detection of psychosis and accessing help quickly remain the greatest challenges. Establishing a health promotion strategy in all early intervention teams is crucial. Further training may be necessary for [...]
The family is a space for learning that is in constant renewal and enrichment. However, when one of its members has a disability, the family plays a major role in the daily reconstruction of the intimate and social life of its members. And as ageing is inevitable, parents are constantly worried about who will take care of their children. Children become increasingly more dependent as parents face physical limitations in caring for their children. A qualitative descriptive exploratory study using a phenomenological approach was carried out to answer the initial question: “Do parents of adult children with disabilities experience specific needs?” Based on this methodology, data were collected through semi-structured interviews with five elderly parents caring for their disabled children and attending the CEFPI (Centre for Integrated Vocational Education and Training). Results indicate that these parents live for their children, which is inherent to a moderate level of care dependence for self-care functions such as personal hygiene, walking, dressing and undressing. They care for the children by themselves, and they feel alone in their role.
We conducted a systematic review of studies employing telehealth interventions which focused on family caregivers’ outcomes. The Embase, CINHAL, Cochrane and PubMed databases were searched using combinations of keywords including “telehealth,” “telemedicine,” “telecare,” “telemonitoring,” “caregiver” and “family.” The initial search produced 4205 articles, of which 65 articles met the inclusion criteria. The articles included 52 experimental studies, 11 evaluation studies, one case study and one secondary analysis. Thirty-three articles focused on family caregivers of adult and older patients, while 32 articles focused on parental caregivers of paediatric patients. The technologies included video, web-based, telephone-based and telemetry/remote monitoring. Six main categories of interventions were delivered via technology: education, consultation (including decision support), psychosocial/cognitive behavioural therapy (including problem solving training), social support, data collection and monitoring, and clinical care delivery. More than 95% of the studies reported significant improvements in the caregivers’ outcomes and that caregivers were satisfied and comfortable with telehealth. The review showed that telehealth can positively affect chronic disease care, home and hospice care.
This study provides qualitative evidence on the views of service users, their carers and practitioners on the implementation of Part 2 of the Mental Health (Wales) Measure 2010. This part of the Measure requires health boards and local authorities to work in a coordinated way to improve the effectiveness of mental health services. It also requires that care and treatment plans (CTPs) be provided for service users of all ages who have been assessed as requiring care and treatment within secondary mental health services. The report draws upon the focus groups and interviews conducted with service users, their carers and with mental health practitioners. The findings under each of the specific review questions are presented in turn, covering: whether CTPs address the eight areas of life (finance and money, accommodation, personal care and physical well-being, education and training, work and occupation, parenting or caring relationships, social, cultural or spiritual, medical and other forms of treatment including psychological interventions.
Original document (pdf) on the Welsh Government website.
This article is part one of a three-part series designed to help nurses help caregivers.
Families provide most of the care for older adults with chronic illnesses and disabilities. Estimates vary, but as many as 43.5 million Americans currently provide care for a person over 50. Because care giving for seriously and chronically ill people carries well-known physical, emotional, and financial risks, with consequences for the older adults as well as the caregiver, it's important to assess and address a family caregiver's needs, strengths, and limitations. Nurses have the training, skills, and opportunities to carry out these assessments.
The author describes carer information groups developed and run by Stockport Dementia Care Training, and the research undertaken to evaluate their effects.
The Essence of Care benchmarks are a tool to help healthcare practitioners take a patient-focused and structured approach to sharing and comparing practice. There are 12 benchmarks in total. This document provides the benchmarks for pain, so that people and carers experience individualized, timely and supportive care that anticipates, recognizes and manages pain and optimizes function and quality of life. It starts by considering the general indicators that apply to every factor: people’s experience; diversity and individual needs; effectiveness; consent and confidentiality; people, carer and community members’ participation; leadership; education and training; documentation; service delivery; safety; and safeguarding. It then lists the factors specific to pain, together with their supporting indicators. The factors are: access; people and carer participation; assessment; care planning, interventions, evaluation, review and prevention; knowledge and skills; self-management; partnership working; and service evaluation and audit.
Psychosocial interventions have been used for many years in caring for people with mental health problems. The few interventions that have a recognised evidence base are cognitive behavioural therapy (CBT), family interventions, and education programmes for patients and carers. Describes the process of implementing these interventions in a forensic setting and makes recommendations for future practice. Outlines the training provide to staff and the importance of adequate staffing levels.
PURPOSE: To establish the validity and reliability of a questionnaire measuring the experience of informal carers of patients with stroke through acute and rehabilitation hospital treatment.
METHOD: The settings were 6 stroke units in the United Kingdom. Participants were relatives of patients with stroke. The Stroke Carer Experience Questionnaire (SCEQ) asks about specific elements of care and was constructed using qualitative analyses. Convergent and discriminant validity were assessed by correlations with other questionnaires and variables. Criterion validity was examined by correlations with indices derived from qualitative data. Temporal stability was assessed by correlation with a repeated administration. The performance of the questionnaire was compared with that of the Carer Hospital Satisfaction Questionnaire (Carer HospSat).
RESULTS: Seventy-two (49%) of 147 questionnaires were returned. Test-retest reliability, assessed by a questionnaire mailed 7 days after the first completion, was 0.77. The correlation with the Carer HospSat was 0.57, indicating convergent validity. The SCEQ did not correlate with demographic variables or functional ability, which indicated discriminant validity. Significant correlations with indices derived from carers' qualitative descriptions evidenced criterion validity. The SCEQ detected specific negative experiences among carers with high global satisfaction scores on the Carer HospSat. In general, the SCEQ items were not strongly intercorrelated; only 6% of the intercorrelations were strong to moderate (30.6).
CONCLUSIONS: The SCEQ is preferable to existing questionnaires for carers of patients with stroke, because it has established validity and reliability and assesses service characteristics important to carers. It also identifies experiences in services that elude global satisfaction ratings. It is a promising instrument for identifying service strengths and unmet needs.
This paper examines differences in work restrictions of midlife family carers of older people in terms of prevalence, gender and explanatory variables, in six European countries: Germany, Greece, Italy, Poland, Sweden and the United Kingdom. A sample of 2,897 carers aged 45–64 was extracted from the EUROFAMCARE (Services for Supporting Family Carers of Older People in Europe: Characteristics, Coverage and Usage) European project database, in order to analyse four possible work restrictions experienced in connection with the activity of care-giving: the reduction of working hours; giving up working; difficulties in career developments and forced occasional work. The results show that work restrictions are experienced differently between countries especially by women: they are reported to a higher degree in the United Kingdom, Germany and Greece, less so in Italy, and seldom in Poland and Sweden. Gender differences within countries are not so marked. Country differences are explained in the light of the different welfare regimes characterising the countries under investigation, in order to elucidate how policy makers may act to improve working carers' conditions through appropriate policies.
Website providing a range of resources to help support social work practice with carers. It aims help social workers to develop a better understanding of the issues carers face and provides tools to help put this learning into practice. Resources cover general information about social work with carers, links to resources about social work law and practice, tools and training materials. The site also includes five case studies which illustrate how social work can provide support to carers. Each case study includes information about the case, examples of carers assessment and support plans, and tools and resources to help social workers consider their own practice. The site has been commissioned by the Department of Health and developed by RiPfA in partnership with carers along with support from Carers UK and the Carers Trust.
Health workers in Barnsley have found that training can help counter tokenism in user and carer involvement in the planning and delivering of services. Looks at the training course delivered to service users and carers which included: developing participants' skills in writing and evaluating standards; and de-mystifying jargon.
Background: Information is a key part of service provision to people with dementia and their carers, but there is no systematic review of the evidence. This study aimed to determine whether information services confer significant benefit for quality of life, neuropsychiatric symptoms and carer burden.
Method: A systematic review of intervention studies in people with dementia was carried out, focussing predominantly on the provision of information and/or advice.
Results: Thirteen randomised controlled trials were identified. Two of the three studies measuring quality of life indicated benefit. Significant benefits were also evident for neuropsychiatric symptoms (points difference, −1.48; confidence interval, −2.11 to 0.86), but not carer burden. Most interventions included other key elements such as skills training, telephone support and direct help to navigate the medical and care system.
Conclusion: There is some support for the value of information services, but studies are needed to determine the specific elements that are effective. Copyright © 2011 John Wiley & Sons, Ltd.
NAViGO, a community interest company formed by service users and carers in partnership with mental health workers, has take over the running of all mental health services in northeast Lincolnshire. This article investigates this innovative example of service user and carer involvement in designing and delivering mental health services. The introduction of RESPECT training, which trains mental health workers to defuse difficult situations without using control and restraint techniques, is also discussed.
Young carers are a global phenomenon. The UK estimates it has in excess of 175 000 young carers, the onset of their caring role often occurring between 8 and 10 years of age. Of these, 17 000 are caring for a parent who has severe mental illness, a significant factor for children entering the health and social care system, as up to 60% experience mental health difficulties themselves. This paper reports on the outcome of a participatory project aimed at better understanding the needs of young people. A World Café event was hosted, bringing together those involved in promoting the mental health of young people in a partnership consortium. The event was led by young service users and carers. Important issues raised by the young carers were being excluded from being included; stuck in the here and now, ignoring the future; a hole in the net; and ensuring the hidden is on the agenda. The World Café gave the university the privilege of insight into what local young carers need to improve their mental health, and more importantly, how we can utilize our skills to help them achieve their goals.
EU and national policies for long-term care acknowledge the role of informal carers. However, there is still little adequate support to prepare or ease informal carers in terms of training to allow them improve their skills, alleviate psychosocial stress and maintain their own health and well-being. In the CarerSupport project, we seek to integrate services, deploy and test an integrated ICT platform enabling participation and collaboration of informal carers, psychologists and health professionals to collaborate, facilitate training and orientation, offer tele-consulting services and psychosocial support to carers. Based on this platform and its content, we will deploy and report on informal carers' experiences with the wide range of offered service. The poster will present the first experiences and suggest potentials for a service like CarerSupport.
In the UK, there are around 1.5 million carers of people with mental health problems providing substantial amounts of free care. Despite having a legal right to a ‘carer's assessment’, only a minority of mental health carers have had such an assessment. To try and understand why the uptake is so low, we undertook a small (n = 8) qualitative study exploring what mental health staff acting as ‘care co‐ordinators’ thought the barriers to, and facilitators of, carers' assessments might be, and how subsequent practice might be improved.We found that there was some confusion over the definition of ‘carer’ and over who should take responsibility for carer assessments. The main barriers to carers' assessments were the documentation used, the attitudes of staff (especially managers) and the fact that the needs of mental health carers often differed from those caring for people with a physical disability. Practice could be improved through: clarifying the definition of ‘carer’; education and training; redesigning the documentation; dovetailing service user and carer needs assessments; and through offering a wider choice of evidence‐based services as assessment outcomes. Improvements are unlikely to be successful, however, without the active support, expertise and engagement of carers.
Based on two years of fieldwork, conducted between March 2003 and March 2005 in the health care industry of the northeastern United States, this study shows that the work of family caregivers of elders goes far beyond previously recognized care in the home to acknowledge care inside health care facilities and in conjunction with community services. It reveals that family caregivers — untrained, undersupported, and unseen — constitute a “shadow workforce,” acting as geriatric case managers, medical record keepers, paramedics, and patient advocates to fill dangerous gaps in a system that is uncoordinated, fragmented, bureaucratic, and often depersonalized. Detailed examination of what family caregivers actually do in traversing multiple domains reveals the extent of their contribution to and the weaknesses in the present geriatric health care system. It suggests that the experiences of family caregivers must be central to the creation of new policies and a more coordinated system that uses the complex work of family caregivers by providing the training and support that they need.
The Strategy gives a direction for the sector for the next 10 years; focusing on improving skills throughout the workforce, increasing confidence in the sector and involving service users and carers in all aspects of workforce development. Committee members will disseminate the strategy to their sectors and raise awareness of the requirements it places on employers and workers. The committee will now explore how to implement the strategy, examining targets and the implications these have for employers.
The Caring with Confidence (CwC) programme aimed to provide support to 37,000 carers in England. It was the largest programme of training for carers ever planned in the UK, with a total budget of £15.2m over three years. It was designed to provide training and support to carers, thereby giving them greater choice and control in different aspects of their lives.
The evaluation comprised a three-year study carried out at the University of Leeds between June 2008 and May 2011. The study team was asked to: provide an account of the National Team in setting up, implementing and sustaining CwC; report on the success or otherwise of CwC in delivering its objectives; assess the impact of CwC on carers taking part in the programme; and assemble evidence on the impact of CwC on the organisations contracted to deliver it.
Objectives: Dementia is a rapidly growing public health problem in low and middle income countries. There is an urgent need, in the absence of formal services, to develop interventions designed to improve the lives of people with dementia, and their families. This study tests the effectiveness of the 10/66 caregiver intervention among people with dementia, and their carers.
Design: A single blind parallel group randomized controlled trial (ISRCTN41039907).
Participants: Sixty family caregivers of people aged 65 and over with dementia were randomized to receive the intervention and medical care as usual (n = 30) or medical care as usual only (n = 30). Caregiver and person with dementia outcomes were assessed at baseline and after 6 months.
Intervention:The caregiver education and training intervention was delivered over five, weekly, half-hour sessions and was made up of three modules: (i) assessment (one session); (ii) basic education about dementia (two sessions); and (iii) training regarding specific problem behaviors (two sessions).
Measurements: Dementia was diagnosed using DSM-IV criteria. Caregiver: Zarit Carer Burden Interview; carer psychological distress (SRQ 20); and carer Quality of Life (WHOQOL-BREF). Person with dementia: Behavioural and Psychological symptoms (NPI-Q); quality of life (DEMQOL).
Results: Caregivers in the intervention group reported large and statistically significant net improvements at 6-month follow-up in burden compared to controls. No group differences were found on caregiver psychological distress and patient and caregiver quality of life.
Conclusions: The low-level intervention seems to be as, if not more, effective than similar interventions applied in high income countries. Copyright © 2008 John Wiley & Sons, Ltd.
The Essence of Care benchmarks are a tool to help healthcare practitioners take a patient-focused and structured approach to sharing and comparing practice. There are 12 benchmarks in total. This document provides the benchmarks for safety, so that people, their carers, visitors and staff feel safe, secure and supported. It starts by considering the general indicators that apply to every factor: people’s experience; diversity and individual needs; effectiveness; consent and confidentiality; people, carer and community members’ participation; leadership; education and training; documentation; service delivery; safety; and safeguarding. It then considers the factors specific to safety, together with their supporting indicators. The factors are: orientation; assessment – risk of injury; assessment – risk to others; observation and privacy; planning, implementation, evaluation and revision of care; and positive culture.
Sets out the role and responsibilities for nurses providing care and support for people with dementia. It updates an earlier strategy published in 2013, and aims to support all nurses to be responsive to the needs of people with dementia, continue to develop their skills and expertise, and achieve the best outcomes for people with dementia, their carers and families. It looks at how nurses can use the Dementia Core Skills Education and Training Framework and outline’s their role within all phases of dementia and area of nursing practice. Links to relevant guidance and resources are included.
Background/Aim: Stroke is a well-documented public health problem in low, middle, and high-income countries. Post stroke, patients are discharged home quite early and usually need help with activities of daily living. This help is usually provided by informal carers. The purpose of this study was to establish the effect of carer education on functional abilities of patients with stroke in a low resource setting where access to rehabilitation post discharge was limited.
Methods: A randomised controlled trial consisting of two groups (control and experimental) each with 100 patients and their carers was used. The carers in the control group received individualised training as was needed to help look after the person with stroke. The patient's functional abilities were measured using the Barthel Index and the Rivermead Mobility Index. Measurements were taken at discharge, 3, 6 and 12 months post discharge from hospital.
Results: Patients were discharged home with low functional abilities and though they improved over time, they did not do so to satisfactory levels. Carer education alone did not result in significant improvements in patients’ functional abilities.
Implications and conclusion: There is a need to devise new ways of providing rehabilitation to patients post discharge from hospital e.g. strengthen domiciliary visits. Carers require more support to enable them to positively influence patient outcomes post stroke.
Reports on the development of a joint mental health strategy for older people in a central London Borough. The project brought together clinicians and practitioners from a variety of settings, the voluntary sector, and users and carers. The aim of the project was to develop a shared philosophy of care based on promoting independence and from this to identify the components of a spectrum of care that would meet the wide range of needs of elders with mental ill health. The borough had high levels of deprivation, unemployment and poor housing. In addition there was a rich ethnic diversity within the borough.
Background: Case management programmes for home-dwelling people with dementia and their informal carers exist in multiple forms and shapes. The aim of this research was to identify the essential components of case management for people with dementia as well as the preconditions for an effective delivery of case management services.
Method: The method used to carry out the research was a modified four-phase Delphi design. First, a list of potentially essential components and preconditions for the provision of case management was drawn up on the basis of a literature review and a subsequent focus group interview. The list was then validated by experts in a first Delphi survey round, following which the researchers translated the list items into 75 statements. In the second Delphi survey, the experts rated the statements; in the third Delphi round, they rated 18 statements on which no consensus had been reached in the second round.
Results: The experts were able to build consensus on 61 of the 75 statements. Essential components of case management for people with dementia are: information, support and counselling, coordination of the care provided and, to a lesser extent, practical help. A patient-centred approach was found to be one of the key aspects of providing case management services. Essential preconditions are: vision, care relationship, structured methodology, integration of case management into the health care chain, and the case manager's level of training and expertise.
Conclusions: We recommend that, based on the essential components and preconditions referred to above, quality criteria be developed for the provision of case management for people with dementia. Furthermore, we suggest the conduct of additional research to assess the effectiveness of case management in people with dementia.
Age‐related disability in bathroom use is already a significant problem, and is destined to become even greater. Previous research has focused on how the person can be enabled to cope with the bathroom environment by functional training or introduction of assistive technologies. More recently attention has been drawn to the design of bathroom furniture. This article outlines the work undertaken to establish the views of the bathroom of older people and carers, and how involvement of older people as researchers has given strong direction, support and confidence in identification of issues in need of attention and in product development.
Due to the successes in medical science people are now beginning to live much longer. With this brings increased problems associated with ageing, with one exemplar being dementia. Persons with dementia require care with activities of daily living, for example, with washing, dressing and eating. This requires additional care, which is usually provided by family and friends who assume the role of informal carers. Provision of care by informal carers brings irreversible changes to their lives that can lead to depression and feelings of loneliness. In part, these changes are linked with carers having insufficient understanding and training with dementia. The EU funded STAR project created an web portal that aims to provide the necessary online training that carers need, however, the usability of such a provision warrants investigation. This paper presents the findings of a usability test conducted on five carers of people with dementia while using the STAR Training Website. For the 21 usability issues identified, the paper outlines proposed solutions.
It is a central feature of current Norwegian health and social care policy to see informal carers as active partners. However, research has revealed that carers often experience a lack of recognition by professionals. In 2010, the Norwegian Directorate of Health initiated a web-based competence-building programme (CBP) for health and social care practitioners aimed at facilitating collaboration with carers. The programme comprised case presentations, e-lectures, exercises and topics for discussion, and was introduced in 2012. It was flexible and free of charge. This article is based on a study (2012–2013) that followed the piloting of this CBP in four settings. The study aimed to explore factors that influenced the implementation of the programme and whether or not using it affected health and social care practitioners’ attitudes and perceived capacity for collaboration with carers. The study employed a mixed-methods design. A questionnaire was distributed to all staff before and 5 months after the CBP was introduced, followed by focus group interviews with a sample of staff members and individual interviews with the leadership in the involved settings and those who introduced the programme. The quantitative data were analysed using descriptive statistics, which subsequently formed the basis for the focus group interviews. The qualitative data were analysed by means of content analysis. The programme's introduction was similar across all research settings. Nevertheless, whether or not it was adopted depended to a large extent on leadership commitment and engagement. In settings where the programme's use was monitored, supported by management and formed part of on-the-job training, there seemed to be a positive impact on staff attitudes concerning collaboration with carers. Participant staff reported that their awareness of, motivation for and confidence in collaboration with carers were all strengthened. In contrast, the programme was of minimal benefit in settings with low leadership engagement.
Short films of short break carers providing short breaks to disabled children and young people are presented to highlight the rewards of becoming a short break carer. The films look at care in different settings, including: family-based short break carers; contract (fee paid) carers; sitters; outreach workers; and befrienders. The carers explain what they do, the support and training they receive and why they enjoy it.
This e-learning training module aims to support re-orientation and re-skilling of staff directly involved in decision-making using Fair access to care services (FACS) and eligibility criteria, their supervisors and line managers, and those monitoring and reporting on the operations of the system. Sections cover the implications for practice of the revised FACS guidance; what FACS says about assessment, support planning, reviews and transitions; supporting carers; and the financial implications of FACS 2010, including resource allocation systems, personal budgets, and self-funding and charging. The module also includes a series of cases to test your assessment skills. [NB As of April 1 2015, this course has been de-listed and is no longer available. Fair access to care has now been wholly replaced by new practice and guidance described in the Care Act 2014].
Young adult carers experience significant disadvantage as a result of their caring responsibilities--not least in education. While there is some creative and flexible provision out there, the author stresses that too often providers fail to take account of the specific needs and responsibilities of young carers. The author presents the comments made by young adult carers who participated in focus groups and interviews as part of recent NIACE research, "Access to Education and Training for Young Adult Carers," funded by the Nuffield Foundation. They give an indication of the day-to-day difficulties faced by these young people. NIACE's research identified a range of factors that can have a positive impact upon young adult carers' engagement in learning and improve their wellbeing, these include: (1) flexible provision; (2) relaxed provision; (3) sensitive arrangements; (4) emotional support; (5) Holistic support; and (6) effective multi-agency working. Building on the findings of this research, NIACE has recently secured funding from the Department of Health's Third Sector Investment Programme for a project called "Who Cares? Promoting Family Focused Learning Opportunities for Young Adult Carers." This project will support practitioners who work with young adult carers to develop learning opportunities that are family-focused and responsive to their needs.
The increasing focus on the involvement of people who use health and social care services and their carers in developing services and in social work education has the potential to bring significant change. This book examines the challenges in enabling people who are `experts by experience' to participate in an agenda which is largely dominated by 'top-down' managerial practices. Several themes run through the book. The enactment of power is examined closely, as is the value of maintaining a grassroots approach, driven by the views of those with direct experience of health and social care services. Based on an unique collaboration between academics, carers and care users who have worked together on a project to develop the involvement of service users and carers in social work education, this book identifies practices that go beyond good intentions to bring about significant change. The contributors share their experiences of participation between people who care, people who use care services and those who provide care services. The values and skills for active involvement of carers and service users in the delivery of care services are discussed and contracted with participation models which merely function as management audit tools or as public relations exercises. The current climate of political and professional commitment to such service user and carer involvement is assessed and critically reviewed. This book will interest to a broad readership, including people who use health and social care services; students of health, social care and social work; academics involved in teaching health and social care and practitioners and policy makers.
Background: NHS Direct is a new service that offers 24-hour advice from trained nurses. The National Service Framework for Mental Health and the National Strategy for Carers both mention NHS Direct as an important source of support for people with mental health problems. Aims: This paper reports findings from an evaluation of the Department of Health's NHS Direct mental health initiative. This initiative was established to ensure that NHS Direct can meet the needs of callers with mental health problems by offering additional training to all staff and improving the database of mental health services. Method: The findings reported here are based on routine computer data provided by 12 out of 17 NHS Direct sites, 552 data forms completed by nurse advisers from the 17 sites, and 111 questionnaires administered over the telephone with callers to the 17 sites. Results: Mental health calls accounted for 3% of NHS Direct's workload, although these calls were often longer and more complex than other calls. The majority of callers to the service were in touch with other services for their mental health problems (59%), typically their GP. Most callers had 'moderate' mental health problems, as indicated by the Global Assessment of Functioning Scale. Generally callers were satisfied with the service they received, although satisfaction was lower in some areas than previous studies of NHS Direct. Conclusions: Improvements could be made in the mechanisms for referring callers on to other services, and training to increase nurse advisers' knowledge of mental health problems.
Standards for crisis response and resolution services to reduce hospital admissions and repeat admissions are presented. The standards cover access and availability, planning and delivering support, promoting equality and respecting diversity, resolution and discharge, service user involvement, supporting and involving carers, training and workforce development, and working with communities.
Original report (pdf) on the Scottish Government website.
Community (district) nurses (CNs) are well positioned to provide follow-up home visits to bereaved families and carers of their recently deceased palliative clients. An Australian survey of CN's (n = 58, response rate 29%) described their experiences of bereavement support visits, perceptions of their role in bereavement care and their professional support needs. Although positive experiences were commonly reported, with 95% of participants considering bereavement follow-up visits as consistent with their role, 53% found the visits difficult for reasons such as the nurse or client not understanding the purpose, the CN‘s excessive personal identification with the client's situation, the emotional intensity of visits, and lack of confidence or skills despite prior training. The nature and quality of the CN‘s prior relationship with the bereaved family was an important determinant of the visits’ success. Results highlight the value of bereavement support visits, while identifying professional development needs. Managing emotionally intense episodes should receive priority in preparing CN's for this challenging role.
Background: Chronic pain can disrupt the cortical representation of a painful body part. This disruption may play a role in maintaining the individual’s pain. Tactile acuity training has been used to normalise cortical representation and reduce pain in certain pain conditions. However, there is little evidence for the effectiveness of this intervention for chronic low back pain (CLBP). The primary aim of this study was to inform the development of a fully powered randomised controlled trial (RCT) by providing preliminary data on the effect of tactile acuity training on pain and function in individuals with CLBP. The secondary aim was to obtain qualitative feedback about the intervention.
Methods: In this mixed-methods pilot RCT 15 individuals were randomised to either an intervention (tactile acuity training) or a placebo group (sham tactile acuity training). All participants received 3 sessions of acuity training (intervention or sham) from a physiotherapist and were requested to undertake daily acuity home training facilitated by an informal carer (friend/relative). All participants also received usual care physiotherapy. The primary outcome measures were pain (0-100visual analogue scale (VAS)) and function (Roland Morris Disability Questionnaire (RMDQ)). Participants and their informal carers were invited to a focus group to provide feedback on the intervention.
Results: The placebo group improved by the greatest magnitude for both outcome measures, but there was no statistically significant difference (Mean difference (95%CI), p-value) between groups for change in pain (25.6 (-0.7 to 51.9), p = 0.056) or function (2.2 (-1.6 to 6.0), p = 0.237). Comparing the number of individuals achieving a minimally clinically significant improvement, the placebo group had better outcomes for pain with all participants achieving ≥30% improvement compared to only a third of the intervention group (6/6 vs. 3/9, p = 0.036). Qualitatively, participants reported that needing an informal carer was a considerable barrier to the home training component of the study.
Conclusions: This pilot RCT found tactile acuity training to be no more effective than sham tactile acuity training for function and less effective for pain in individuals with CLBP. That the intervention could not be self-applied was a considerable barrier to its use.
This Act makes three main changes to the law with the objective of providing further support for carers and helping to ensure that they are not placed at a disadvantage because of the care they provide. First, the Act requires local authorities to inform carers, in certain circumstances, that they may be entitled to an assessment under the 1995 and 2000 Acts. Second, when undertaking a carer's assessment, the local authority must consider whether the carer works, undertakes any form of education, training or leisure activity, or wishes to do any of those things. Third, the Act provides for co-operation between local authorities and other bodies in relation to the planning and provision of services that are relevant to carers.
Young carers are children and young people who look after family members with illness, disabilities, mental illness or substance misuse. Many of these young carers help with personal nursing care and administration of medication as well as household tasks and care of younger siblings. Inappropriate levels of caring can impact on a child's own emotional and physical health, educational achievement and life chances. There are many reasons why young carers may remain hidden and unsupported including reluctance among some families to acknowledge children's caring roles or involve agencies because they fear family breakup. It is essential to develop proactive practice that will enable families to feel able to ask for support. Health professionals have a responsibility and are in a key position to identify these vulnerable families and mobilise support services. The key to support is the development of a whole family approach to offering co-ordinated assessments and services to support the person with care needs and their family as well as the young carer. The Whole Family Pathway is an online resource directing practitioners to support for young carers and their families. Young carers say that they would like to be listened to, provided with information, supported at school and referred to young carers' projects. The Children's Society Include Project provides training and resources for professionals who work with young carers and their families.
The pack includes: introduction with information on: learning disability qualifications and standards; supporting assessment; involving people with learning disabilities and family carers in training; session plans; CD-ROM containing: activity sheets PowerPoint presentations video clips, and pdfs of all four study books with guidance on how to link learning to the relevant NVQ/SVQ.
Purpose. To explore: (a) the type and frequency of care-giving activities provided by family members in the Rehabilitation Setting (RS), (b) opportunities for family members to receive training in care-giving activities, (c) to what extent caregivers feel free to ask the nursing staff for help and (d) to estimate the number of nursing staff required to substitute this care and thus to estimate the money saved by the RS due to the in-hospital informal care.
Method. A convenience sample of 80 family members was selected. A questionnaire was developed to investigate several aspects of informal in-hospital care. Data was analysed using SPSS for Windows (Release 10.1).
Results. Cultural reasons and nursing staff shortage led 78.8% (n = 63) of the sample to provide informal in-hospital care. Oral and facial care (67.5%), help with getting dressed (62.5%), help with feeding (61.25%, n = 49), making patients' beds (57.5%, n = 46) and assistance with transferring patients from one hospital department to another (56.25%, n=45) was provided on a daily basis by the subjects. 48.75%, (n=39) changed sheets 1-2 times per week, while assistance with transfers from bed to wheel-chair and vice-versa (43.75%, n = 35) was provided 3-4 times per week. The estimated total time spent per week by the subjects on care-giving activities was 34,034 minutes that corresponds to a total of 75.6 working days or 15.12 working weeks. In order to substitute this care, the RS would need to hire 17 more assistant nurses, entailing a cost of from e14,450 to e20,060 per month.
Conclusions. Informal in-hospital care is provided by Greek families in the RS. Nursing care staff shortage combined with cultural factors are the main reasons for this phenomenon. However, it saves the RS and the Greek State money and policy makers should be looking for ways to overcome the nursing shortage.
Describes the process and outcomes of developing a carers' training and education programme, for carers of people with dementia, using a partnership approach.
The care that people receive at the end of their lives has a profound impact not only upon them but also upon their families and carers. At the most difficult of times, their experience will be made worse if they encounter poor communication and planning or inadequate professional expertise. The Health Committee has looked at the state of end of life care since the independent Review of the Liverpool Care Pathway, chaired by Baroness Neuberger, and found great variation in quality and practice across both acute and community settings.
Looks at the state of end of life care, highlighting great variation in quality and practice across both acute and community settings. The report argues that round-the-clock access to specialist palliative care in acute and community settings would greatly improve the way that people with life-limiting conditions and their families and carers are treated, especially if there were opportunities to share their expertise with other clinicians. The report sets out a number of action points for improvement, and in particular recommends that social care should be free at the end of life. The report suggests that all staff who provide palliative and end of life care to people with life limiting conditions should receive training in advance care planning, including the different models and forms that are available and their legal status. It also calls on the government to provide free social care at the end of life.
The introduction of the new social work degree, which had its first intake in September 2003, provided an important and exciting opportunity to make participation in social work education a reality by requiring that service users and carers be involved in all aspects of course design and delivery, including the selection and assessment of students. This is the annual quality- assurance report (AQAR) to be compiled by the General Social Care Council (GSCC). The report draws on the full range of quality-assurance (QA) processes undertaken during the reporting year April 2004 to March 2005.
Aim. This paper presents findings from secondary analysis of longitudinal data on correlates of care relationship mutuality collected from 91 carers of people with Alzheimer’s disease and Parkinson’s disease in the control group of a randomized trial of home-care skill training.
Background. Many family members and other informal carers are reported to suffer multiple adverse social, financial, psychological and physical caregiving outcomes. High levels of mutuality, the perception that the quality of the care relationship is positive, reportedly ameliorate these negative outcomes.
Method. Multilevel models for change were used to explore whether care recipient functional ability, carer gender, depressive symptoms, kin relation to care recipient (spouse, non-spouse) and years of caregiving experience were related to carers’ perceptions of care relationship mutuality over a 12-month period. Data collection took place between 2003 and 2008.
Results. Carers who reported lower mutuality: (1) were caring for care recipients with lower functional ability, (2) had less caregiving experience and (3) had more depressive symptoms.
Conclusion. Informal carers who perceive little mutuality in their relationship with the care recipient may be more likely to terminate care early. Clinicians and researchers should explore the quality of the caregiving relationship as a critical factor in carer and care recipient outcomes. Home-care skill training may need to include relationship-building skills to offset adverse carer outcomes.
Aim. To explore first-time primary caregivers’ experience of the way mental health nurses and other mental health clinicians respond to them as carers of young people with first-episode psychosis.
Background. Caregivers have a key role in supporting family members/relatives with mental illness, but their contribution is undervalued frequently by mental health nurses and other mental health clinicians.
Design. Qualitative interpretative phenomenological analysis.
Method. A qualitative interpretative design was undertaken, using semi-structured, audio-recorded interviews. Twenty primary caregivers were recruited through Orygen Youth Health, a first-episode psychosis centre in Melbourne. Interpretative phenomenological analysis was used to identify themes in the data.
Results. Two competing themes were identified in the data, highlighting caregivers’ contrasting experience with mental health nurses and other mental health clinicians. First, most clinical staff were approachable and supportive. Second, several carers felt their contribution was undervalued by some clinical staff. This was as a consequence of being excluded from clinical deliberations because of clinical staffs’ concerns and young people’s requests about maintaining confidentiality regarding treatment, as well as carers feeling their role was not taken seriously by clinical staff.
Conclusion. First-time primary carers have positive and negative experiences with first-episode psychosis mental health nurses and other clinicians, and these competing events are interrelated. Experiences are affected directly by the manner they are treated by clinical staff and this may, in turn, affect carers’ commitment to caring, the way they engage with clinical staff on subsequent occasions and towards the first-episode psychosis service generally.
Relevance to clinical practice. Greater appreciation is needed of the contribution, experience and difficulties caregivers encounter in their role and in engaging with mental health nurses and other clinicians. Additional training is required for clinical staff in family interventions and to familiarise them with legislation and mental health policies relating to carers.
This article describes a caregiver education program that includes both family and professional caregiver issues developed by the Rosalynn Carter Institute for Human Development in the United States. In the program there are modules designed too bring professional and family caregivers together for a better appreciation of collaboration and teamwork; discussions of the meaning of caregiving; a module looking at how well carers are looking after themselves; modules focusing on building collaborative relationships with other caregivers; problem solving; and accessing resources.
In this chapter the author recounts her personal experiences of being a carer for her son and her interaction with social services in Scotland. The author's son is now over 30 years old and is on the autistic spectrum, has obsessive compulsive disorder and a learning disability. She recounts the early difficulties she had in dealing with health and educational professionals as she tried to achieve the best possible care for her son. Many of the professionals she encountered were unable to appreciate the importance of integrating her son into as many normal daily activities as possible. Communicating with health professionals was difficult and at times she felt ignored or treated as a token presence. Gradually she became more involved in support groups for carers, using her own experiences to advising on training matters and act as advocates for carers. She is now a member of the Carers and User Group at the University of Dundee.
Reports on what the proposed legislation Carers (Equal Opportunities) Bill, will mean for the provision of services to carers. It aims to provide carers who end their caring role with information on opportunities for education, training and employment.
The views of people with experiences of using services and the views of their carers about the 2005 Mental Capacity Act (England and Wales) are reported in this article. Interviews with ten people about the detail of the Act prior to its implementation revealed that they welcomed the principles of the Act, and were able to relate these to aspects of their experiences. The Act's framework for planning around care and treatment and for making advance decisions was seen as offering greater choice and empowerment. Comments were made about the need for the Act to be publicized by professionals, for practitioners to provide specific information and for people with experiences of using services and carers to be included in training and monitoring. The data also revealed some concerns about implementation processes, about missed opportunities for legislative reform and the difficulty of balancing risks and safeguards. Such issues are likely to be highly relevant to social work practice; social workers are alerted to the expertise existing among many people with experiences of using services and carers and to the variations in opinion and knowledge likely to be found among people using services and carers.
It is frequently asserted that the views of patients or service users should inform the structure and delivery of health and social care services. In the UK, patient participation, the expertise of service users and user involvement in the design and outcomes of research have been repeatedly emphasized as producing services which are more responsive, better coordinated and less stigmatizing. The NHS has highlighted the importance of involving service users in education and training. This article reports on user and carer views about learning disability nursing. Data were collected as part of a larger project considering the changing roles and education of learning disability nurses in England.The article concludes with a series of challenges for future educational and service development.
The title introduces care workers to dementia and aims to: Develop an understanding of the condition and how it affects the person; Explore myths and stereotypes and consider how these can influence the quality of care given; Introduce the person-centred qualities that a skilled carer would reflect in their day-to-day practice Show how person-centred values and modified techniques can improve carers’ ability to provide responsive and supportive dementia care.
Six million informal carers provide support for aged and disabled people in the United Kingdom. Government policies suggest that primary care teams are the main support for carers. This postal survey of 300 general practitioners (GPs) and 272 district nurses (DNs) aimed to determine current practice and views on their role in supporting informal carers. In practice, GPs and DNs lack time, resources, and training to provide support, and see themselves in a reactive role only.
Objectives: To explore the perceptions of family carers, older people and health professionals in Australia about what constitutes elder abuse.
Methods: The Caregiving Scenario Questionnaire (CSQ) was disseminated to health professionals from two metropolitan hospitals, older volunteers and carers of older people with dementia recruited for other studies.
Results: One hundred and twenty health professionals, 361 older people and 89 carers returned the surveys. χ2 analyses indicated that significantly more health professionals than older people identified locking someone in the house alone all day (χ2 (2) = 10.20, p = 0.006, Cramer's V = 0.14), restraining someone in a chair (χ2 (2) = 19.984, p = 0.0005, Cramer's V = 0.19) and hiding medication in food (χ2 (2) = 8.72, p = 0.013, Cramer's V = 0.13) as abusive. There were no significant differences between healthy volunteer older people and carers in their perceptions of elder abuse. A significant minority (40.8%) of health professionals and over 50% of carers did not identify locking the care recipient alone in the house all day as abusive.
Conclusion: In Australia, there is limited consensus between older people, carers and health professionals regarding what constitutes elder abuse. Health professionals were more likely to identify abusive and potentially abusive strategies correctly than carers or healthy older people, but nonetheless between one quarter and two-fifths [correction made here after initial online publication] of health professionals did not identify the abusive strategies. Copyright © 2010 John Wiley & Sons, Ltd.
Aims. This paper presents the results of a systematic review examining the practical information needs of informal caregivers providing home-based palliative and end-of-life care to people with advanced cancer.
Background. Modern hospice care has led to increases in home-based palliative care services, with informal caregivers assuming responsibility for the majority of care. In response, health policy emphasises the provision of palliative care services in which both the patient and carer receive adequate support throughout illness and death. While the emotional needs of carers have been extensively researched, their practical needs with respect to the provision of physical care are yet to receive systematic attention.
Design. Systematic review.
Methods. Eligible articles were identified via electronic searches of research and evidence-based databases, hand-searching of academic journals and searches of non-academic grey literature websites. Quality of research was assessed via accepted guidelines for reviewing non-randomised, observational and qualitative literature. Data were synthesised by comparing and contrasting the findings to identify prominent themes.
Results. Research consistently highlights this lack of practical support, often related to inadequate information exchange. These deficits typically manifest in relatives adopting a ‘trial and error’ approach to palliative care. Informal carers request a greater quantity of practically-focussed information, improvements in quality and increased methods of dissemination.
Conclusion. Synthesis of the literature suggests that home-based palliative care services have been insufficiently focussed on assisting informal caregivers acquire practical nursing skills.
Relevance to clinical practice. Enhanced access to professional advice represents a potentially effective method of increasing carers’ confidence in their ability to undertake practical aspects of home-based care. Evidence suggests that nurses and other health providers may better assist home-based carers by providing the information and skills-training necessary to facilitate this. This may necessitate the involvement of carers in the design and testing of new educational interventions.
Objectives: To determine whether a social support intervention (access to an employed befriending facilitator in addition to usual care) is effective compared with usual care alone. Also to document direct and indirect costs, and establish incremental cost-effectiveness.
Design: The Befriending and Costs of Caring (BECCA) trial was a cost-effectiveness randomised controlled trial. Data on well-being and resource use were collected through interviews with participants at baseline and at 6, 15 and 24 months.
Setting: This research was carried out in the English counties of Norfolk and Suffolk, and the London Borough of Havering. It was a community-based study.
Participants were family carers who were cohabiting with, or providing at least 20 hours' care per week for, a community-dwelling relative with a primary progressive dementia.
Interventions: The intervention was 'access to a befriender facilitator' (BF). BFs, based with charitable/voluntary-sector organisations, were responsible for local befriending schemes, including recruitment, screening, training and ongoing support of befriending volunteers, and for matching carers with befrienders. The role of befrienders was to provide emotional support for carers. The target duration for befriending relationships was 6 months or more.
Main outcome measures: Depression was measured by the Hospital Anxiety and Depression Scale (HADS) at 15 months postrandomisation. The health-related quality of life scale EQ-5D (EuroQol 5 Dimensions) was used to derive utilities for the calculation of quality-adjusted life-years (QALYs).
Results: A total of 236 carers were randomised into the trial (116 intervention; 120 control). At final follow-up, 190 carers (93 intervention; 97 control) were still involved in the trial (19% attrition). There was no evidence of effectiveness or cost-effectiveness from the primary analyses on the intention-to-treat population. The mean incremental cost per incremental QALY gained was in excess of 100,000 pounds, with only a 42.2% probability of being below 30,000 pounds per QALY gained. Where care-recipient QALYs were included, mean incremental cost per incremental QALY gained was 26,848 pounds, with a 51.4% probability of being below 30,000 pounds per QALY gained. Only 60 carers (52%) took up the offer of being matched with a trained lay befriender, and of these only 37 (32%) were befriended for 6 months or more. A subgroup analysis of controls versus those befriended for 6 months or more found a reduction in HADS-depression scores that approached statistical significance (95% CI -0.09 to 2.84).
Conclusions: 'Access to a befriender facilitator' is neither an effective nor a cost-effective intervention in the support of carers of people with dementia, although there is a suggestion of cost-effectiveness for the care dyad (carer and care recipient). In common with many services for carers of people with dementia, uptake of befriending services was not high. However, the small number of carers who engaged with befrienders for 6 months or more reported a reduction in scores on HADS depression that approached statistical significance compared with controls (95% CI -0.09 to 2.84). While providing only weak evidence of any beneficial effect, further research into befriending interventions for carers is warranted.
This paper reviews the advances in gerontechnology and describes determinants of interest levels in new technologies among older persons and their caregivers. The first section presents a literature review of new technologies. We then examine the result of two focus groups we conducted on technology, one with elderly people living in an independent living apartment building, and one with caregivers in a special care unit. Focus group results revealed that the elderly participants had mixed attitudes toward technology, although most participants had interest in specific technologies for everyday use. Caregivers were similarly interested in specific types of technology, especially to assist with activities of daily living. Finally, barriers to use of technology are described and include lack of interest, need for training and consumer assistance, and design problems. We conclude that more attention needs to be paid to the tailoring of technology to the preferences of this older age group.
High levels of stress among family and professional caregivers of older adults with dementia are associated with physical and mental health problems, and decreased quality of care. Existing stress reduction interventions are based on the western medical model of care. They typically focus on providing caregivers with support, psychoeducation or behaviour management skills, and these interventions have typically had modest outcomes. An especially promising intervention for dementia caregivers, which is based on the eastern holistic model of care, is mindfulness training. Despite more than 20 years of research demonstrating the effectiveness of mindfulness-based interventions, their applicability for caregivers has received very little attention in the psychological research literature. We discuss how mindfulness training, as an alternative or adjunct to existing interventions, can help caregivers cope with providing care to dying older adults more skilfully, leading to reduced stress, enhanced well-being and improved quality of care.
Background: Most studies of exercise training for heart failure have been conducted on relatively young patients with little comorbidity. Such programmes are unsuitable for the majority of older frail heart failure patients.
Aims: To test the acceptability and tolerability of an outpatient exercise programme in older heart failure patients with comorbid disease.
Methods: 17 patients aged 70 years and over with left ventricular systolic dysfunction attended twice weekly group exercise classes for 12 weeks, focussing on endurance exercise and everyday functional tasks. Outcome measures were proportion of sessions attended; adverse events and reasons for non-attendance; six-minute walk, accelerometry, hospital depression and anxiety score, Guyatt quality of life scale, carer strain and satisfaction scores.
Results: 83% of sessions were attended; 80% of subjects attended at least 80% of allocated sessions. One adverse incident occurred in 324 person-sessions. Encouraging improvements were seen in six minute walk test (+ 19 m, p = 0.14) and in Functional Limitation Profile score (− 82 points, p = 0.02). 50% of informal carers attended at least one session. No increase in carer strain was noted.
Conclusions: Twice-weekly group exercise focussing on aerobic endurance and everyday functional tasks was acceptable and well-tolerated in this patient group.
Context: In 2003 the Department of Health introduced a new qualification for social workers. Previously a diploma, for the first time the social work qualification became a three-year degree course, a move which reflected the difficulty and professionalism of the job. Also for the first time, universities and colleges offering the degree were required to involve service users and carers in the design and delivery of the programme.
Purpose: This guide focuses on how service users, carers and providers of social work education and training can work together on the social work degree. It covers the principles, practicalities and range of approaches to building and sustaining these partnerships.
Audience: The guide is for all those involved in the degree - from programme heads to administrators - but is especially aimed at those responsible for educating and training social workers.
The key messages of the guide apply also to developing service users’ and carers’ involvement in all types of training for social work and social care staff and in the design and delivery of services.
This document sets out the social services national outcomes framework for Wales. The framework describes the well-being outcomes that people who need care and support and carers who need support should expect in order to lead fulfilled lives; sets national direction for services to promote the well-being of people who need care and support, and carers who need support; and provides greater transparency on whether care and support services are improving well-being outcomes for people using consistent and comparable indicators. The well-being outcomes and associated indicators cover a whole range of personal and social dimensions, including: securing rights and entitlements; physical and mental health and emotional well-being; protection from abuse and neglect; education, training and recreation; domestic, family and personal relationships; contribution made to society; social and economic wellbeing; and suitability of living accommodation.
When young people care for a parent with illness or disability their lives are different. This study 'examines the young carer's transition to adulthood'. The profile of 60 young carers is described; half were in lone parent families. Almost all were performing domestic tasks as well as providing general and/or personal care; some were also caring for younger children. Education, training and employment opportunities were, in reality, not available to them. Most of the families were outside the labour market and received welfare benefits. Social exclusion and poverty were widespread. One third of the families received no services at all. Caring had both positive and negative effects on the young carers who remained at home longer than their peers but matured earlier and had high levels of life skills and stress. The implications for policy and practice emphasize the need for services for these young carers.
This article outlines the findings and general implications of Mental Health Foundation research into the needs of older Asians with dementia and their carers. The project was carried out in an area with an Asian majority population in North West Kent. The focus is on the identification of need and on factors which block access to care and support. There are recommendations for practitioners and commissioners about raising awareness, service development and training.
Research findings suggest that nursing assessment and care and psychotherapy of forensic patients with personality disorder should be based on a holistic approach that addresses a wide range of their needs. Such an approach should be in collaboration with patients, informal carers, and other professionals and informed by appropriate education, training, clinical supervision, and support. Holistic care includes areas (such as physical health, cultural, spiritual, and psychosexual needs) that are addressed to a limited extent in the literature on patients with personality disorder. Despite limitations in research evidence, findings suggest that some patients with personality disorder benefit from psychotherapies, sometimes facilitated by nurse-therapists, and therapeutic community principles. These interventions should take account of patients’ cultural and spiritual needs and perspectives. Helping patients to manage anger has potentially positive consequences for their physical health, personal and work relationships, and other areas. Research is needed to consider how to deliver holistic care with limited resources and in organizations, such as prisons, with conflicting goals.
Background: Nonpharmacologic strategies to manage dementia-related behavioral symptoms depend upon caregiver implementation. Caregivers may vary in readiness to use strategies. We examined characteristics associated with readiness, extent readiness changed during intervention, and predictors of change in readiness.
Methods: Data came from a randomized trial involving 119 caregivers in a nonpharmacologic intervention for managing behavioral symptoms. Baseline measures included caregiver, patient, and treatment-related factors. At initial (2 weeks from baseline) and final (16 weeks) intervention sessions, interventionists rated caregiver readiness as pre-action (precontemplation = 1; contemplation = 2; preparation = 3) or action (= 4). Ordinal logistic regression identified baseline characteristics associated with initial readiness. Mc Nemar–Bowker test of symmetry described change in readiness; binary logistic regression identified baseline predictors of change in readiness (initial to final sessions). One-way multivariate analysis of variance identified treatment factors (dose/intensity, number of strategies used, perceived benefits, and therapeutic engagement) associated with change in readiness.
Results: At initial intervention session, 67.2% (N = 80) of caregivers were in pre-action and 32.8% (N = 39) in action. Initial high readiness was associated with better caregiver mood, less financial difficulty, lower patient cognition, and more behavioral symptoms. By final session, 72% (N = 79) were in action and 28% (N = 31) in pre-action; caregivers with less financial difficulty improved in readiness (B = −0.70, p = 0.017); those in action were more therapeutically engaged (F[2,107] = 3.61, p = 0.030) and perceived greater intervention benefits (F[2, 88] = 6.06, p = 0.003).
Conclusion: Whereas patient and caregiver-related factors were associated with initial readiness, financial stability, therapeutic engagement, and perceived benefits enhanced probability of change. Understanding caregiver readiness and factors associated with its change may be important considerations in nonpharmacologic interventions. Copyright © 2013 John Wiley & Sons, Ltd.
In June 2005 it became mandatory for psychiatric trainees to receive training directly from people who experience mental health problems and their carers. This will be checked on approval visits to all training schemes, and accreditation may be withheld until this aspect of training is in place. For many of those who are responsible for training, this may be a new undertaking. The authors outline some of the issues that trainers need to consider when involving service users and carers in their training programmes, including background issues, how to prepare both those delivering and those receiving training, and logistical considerations. It is hoped that this paper will alert trainers to issues that need to be considered if such training is to be successful.
The Caring with Confidence scheme, launched in April 2009, is described. The scheme had been designed to improve support for carers in England over 18 by equipping them with skills to help them in their role. The scheme operates group sessions and online interactive sessions on subjects such as the emotions involved in caring for someone and how to develop coping strategies.
The author examines how a government-backed scheme is helping to give carers the skills to sustain them in their roles.
Purpose: Family carers provide the majority of home-based care for people with motor neurone disease (MND). Carers’ need for, and use of, support services are not fully understood; this study aimed to explore, from a qualitative perspective, the views of current and former family carers of people with MND.
Methods: A qualitative study was undertaken in Northwest England, using narrative interviews with current (18) and former (10) carers of a family member with MND. An optional longitudinal element involving diary completion was offered to the current carers. Data were analyzed using a thematic framework approach.
Results: Carer’s needs vary, but encompass the provision of information and training, availability of respite care, counselling, and access to trained paid-for carers.
Conclusions: There is need for a range of support services to be made available from which carers can select those most appropriate for them. Some support services are not always available for carers of this client group. There is a need for carers to access greater manual handling and training for physical care. Without sufficient support, carer burden can be overwhelming which may impact on the place of care of the patient and ultimately has implications for health and social care services.
Background: Informal caregivers provide a significant part of the total care needed by ill or disabled persons. Although informal care is often the preferred option of those who provide and those who receive informal care, caring can nevertheless be very straining. This study investigates construct validation of an instrument of the impact of caregiving, the CarerQol.
Methods: Data was collected among adult caregivers (n = 1,244) selected from the general population using an online questionnaire in October 2010, in the Netherlands. The CarerQol measures and values the impact of informal care. The CarerQol measures subjective burden (CarerQol-7D) and well-being (CarerQol-VAS). Construct validation comprised clinical, convergent and discriminative validity tests.
Results: Clinical validity was supported by statistically significant associations of CarerQol-VAS and caregivers’ health, income and employment status, care recipients’ health, and the relationship between caregiver and care recipient. Convergent validity was supported by positive associations of CarerQol-VAS with the two positive CarerQol-7D dimensions (fulfillment and support) and negative associations with the five negative CarerQol-7D dimensions (relational problems, mental health problems, problems combining daily activities, financial problems and physical health problems). Moreover, CarerQol-VAS was negatively associated with other instruments measuring caregiving burden.
Conclusions: Construct validity tests in a large, heterogeneous sample of caregivers show that the CarerQol validly measures the impact of caregiving. The CarerQol can be used in informal care research and economic evaluations of health care interventions. Hence, its use can facilitate informed decision making in health care.
Increasingly there is greater emphasis on user/carer involvement in the delivery of mental health care. There are five levels of participation from none at all to partnership and optimal involvement. A two-year pilot steering group was established by a health authority in December 2000 and criteria for independent evaluation agreed. These included the context, data collection, analysis and report, and recommendations based on the findings to increase user/carer involvement in all aspects of mental health service delivery. The steering group evaluation included analysis of documents, non-participant observation and semi-structured interviews. The methodology including measures and analysis follows and then the results. Four broad themes from the interviews with user/carer and manager emerged - for the user/carer these were membership, meeting style, sharing perception and having a voice, while the manager themes comprised representation/consultation, steering the steering group and delivering and achieving the [...]
Introduction: After a major disaster in a developing country, the graphic media coverage of the dead and injured invariably leads to an influx of volunteering healthcare personnel to the disaster zone. Very few studies document the outcomes of the treatment rendered in this field setting, under compromised conditions. We revisited the rural victims of the 2001 Gujarat earthquake in an attempt to analyse their surgical outcome and the status of their physical/psychosocial rehabilitation, 2 years after the disaster.
Method: We traced displaced victims treated for earthquake-related injuries to their new homes. A community health worker interviewed patients with an oral questionnaire in the local language about injuries, the examining physician and first aid, orthopaedic implants, amputations, wounds, disability, deformity, residual pain, occupational and economic rehabilitation, post traumatic stress disorder (PTSD) and perceptions of healthcare rendered.
Results: We located 133 of the 179 non-urban victims, from 11 villages. There were 10% missed injuries, 19% infection rate, restricted range of motion in 12%, non-union rate in 23% and reoperations in 30.5% patients. Fifty-one percent had resumed their previous occupation, but only 30% had recovered economically. Of 98% who had destroyed homes, 89% had their homes rebuilt. Residual sadness was the only significant PTSD symptom.
Conclusion: This trauma outcome study highlights the shortcomings of surgeons for disaster-related work. One-tenth of the injuries were missed, suggesting that field examination at the site of disaster was more difficult than in the comfort of the hospital emergency room. Further there were inappropriately timed, aggressive implant operations, short time commitments, a lack of follow-up and a high rate of reoperations contributing to subsequent morbidity. These pointed to a need for training in disaster medicine within the curriculum of surgical residency. On the brighter side, despite poor sterility, prolonged transport times and no prehospital care, the postoperative infection rate was lower than expected. This perhaps was due to use of potent antibiotics in a previously unexposed rural population. Good physiotherapy given in the temporary shelters, by the informal carers within the family and by voluntary groups, kept up a good range of motion and reduced the final disability. PTSD was marked 3–6 months after the event, but was minimal 2 years postquake. Sadness about the event was the only residual PTSD symptom. While there were varying perceptions of satisfactory outcome, we found good coping mechanisms in place. The simple village folks were largely happy to be alive and accepted the residual deformities and cosmetic blemishes as a “small price to pay”.
Background: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia.
Aim: To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them.
Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual.
Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process.
Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers.
Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia.
The bulk of care in the community is carried out by lay carers. Recent policy initiatives to support them in the United Kingdom are outlined. There remains evidence of significant gaps in support from professional health and social-care workers including community nurses. This paper reports three studies of lay carers: those caring for older people, carers of technology-dependent children, and home-care workers involved in the “direct payments” scheme. Findings are reported in the areas of decisions about appropriate caring roles, the lay–professional boundary, training and respite opportunities and the expertise of lay carers. Recommendations for policy and practices are made.
This article will describe and examine course feedback from a local training initiative, which contributes to the improvements in the health status of people with a learning disability, who have epilepsy. The aim is to analyse how an education programme that focused on epilepsy and its management, together with a borough wide epilepsy protocol developed the skills of the local workforce. This education programme provided a framework for social care staff, enabling them to work both safely and effectively in their support of individuals with learning disabilities that have epilepsy. Learning disability nurses led this training initiative, in response to the health needs of people with learning disabilities. Success was achieved through the collaborative working across a number of agencies and through consultation with family carers and people with learning disabilities. For the purpose of this article the term social care staff refers to people employed within the community residential/day services both in statutory and nonstatutory agencies.
Background Menstruation has been shown to be problematic for many women with intellectual disabilities. There has been a greater focus on menstrual suppression or elimination than on help and training to manage menstrual care successfully. Method A cross‐sectional questionnaire survey was conducted in England to investigate the help and training currently given to women with intellectual disabilities. Results Twenty‐nine percent of the women had never been given the opportunity to learn how to manage their own menstrual care. Where someone had tried to teach the woman, this was most often her mother. Carers were giving considerable amounts of assistance with menstrual care, although some of the women with more profound disabilities were able to manage menstrual care independently. Conclusions The authors argue that all women with intellectual disabilities should have the chance to manage or assist with their own menstrual care, backed by a strategic approach to menstrual education and support.
Objectives This study explores the experience of gastrostomy insertion from the perspective of the patients and their informal carers. Gastrostomy feeding is commonly used to support motor neurone disease (MND) patients with dysphagia. However, there is lack of information describing patient and carer experiences following gastrostomy insertion. The effect of gastrostomy on quality of life for these patients and their family is currently not well understood.
Methods Retrospective qualitative exploration using semistructured interviews with patients and their informal carers to elicit in-depth descriptions of their experiences and views following gastrostomy.
Results 27 patients consented to the study; of these, 23 underwent a successful gastrostomy. 10 patients and 8 carers were interviewed, approximately 3 months following a successful gastrostomy. Participants described clinical complications, practical issues, time restrictions imposed by strict feeding regimens and psychological issues, which adversely impacted on quality of life. However, the establishment of a safe alternative route for feeding and medication, and the reduced worry over difficult meals and weight loss, were described by all as outweighing these negative impacts. Participants also described having received education/training on gastrostomy feeding both in hospital and in the community, which helped them to cope during the transition