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Stroke survivors

The following resources examine caring for people who have had a stroke.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

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Value and learning from carer involvement in a cluster randomised controlled trial and process evaluation - Organising Support for Carers of Stroke Survivors (OSCARSS)

Background: Patient, Carer and Public Involvement (PCPI) should be embedded in health care research. Delivering PCPI can be challenging, but even when PCPI is carried out it is rarely reported resulting in lost opportunities for learning. This paper aims to describe PCPI in the OSCARSS study, a pragmatic-cluster randomised controlled trial with an embedded economic and process evaluation. Methods: A carer research user group (RUG) co-developed OSCARSS to evaluate how to best deliver support to caregivers of stroke survivors. The PCPI activity involved regular meetings and preparatory work, from the initial conceptualisation of the study through to dissemination. Written reports, structured group discussions and individual interviews were carried out with the RUG and researchers to capture the added value and learning. This paper was co-authored by two of the RUG members with contributions from the wider RUG and researchers. Results: The core six members of the caregiver RUG attended the majority of the meetings alongside three researchers, one of whom was the co-chief investigator. PCPI was instrumental in changing many aspects of the research protocol, design and delivery and contributed to dissemination and sharing of good practice. There were challenges due to the emotional toll when PCPI members shared their stories and the extensive time commitment. Positive experiences of learning and fulfilment were reported by the individual researchers and PCPI members. Wider organisational administrative and financial support facilitated the PCPI. The researchers’ existing positive regard for PCPI and the clear focus of the group were key to the successful co-design of this research. Conclusions: The value and learning from the PCPI collaborative work with the researchers was of benefit to the study and the individuals involved. Specific PCPI influences were a challenge to pinpoint as successful co-design meant the researchers’ and carers’ contributions were intertwined and decision-making shared.

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Caregiving Self-efficacy and Knowledge Regarding Patient Positioning Among Malaysian Caregivers of Stroke Patients

Background Most family caregivers of stroke patients in Malaysia do not receive adequate prior preparation or training. This study aimed to determine levels of patient positioning knowledge and caregiving self-efficacy among caregivers of stroke patients. Methods This cross-sectional study was conducted at an urban teaching hospital involving 128 caregivers of stroke patients. The caregivers were conveniently sampled and completed the data collection forms, which comprised their socio-demographic data, patients' functional status, the Caregiving Knowledge For Stroke Questionnaire: Patient Positioning (CKQ-My(C) Patient Positioning) to measure caregiver's knowledge on patient positioning, and the Family Caregiver Activation Tool (FCAT(C)) to measure caregivers' self-efficacy in managing the patient. Descriptive and multivariate inferential statistics were used for data analysis. Results Among the caregivers sampled, 87.3% had poor knowledge of positioning (mean score 14.9 +/- 4.32). The mean score for FCAT was 49.7 +/- 6.0 from a scale of 10 to 60. There was no significant association between knowledge on positioning and self-efficacy. Multiple linear regression showed that caregivers' age (B = 0.146, p = 0.003) and caregiver training (B = 3.302, p = 0.007) were independently associated with caregivers' self-efficacy. Conclusion Caregivers' knowledge on the positioning of stroke patients was poor, despite a fairly good level of self-efficacy. Older caregivers and receiving caregiver training were independently associated with better caregiver self-efficacy. This supports the provision of caregiver training to improve caregiver self-efficacy.

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Getting back to life after stroke: co-designing a peer-led coaching intervention to enable stroke survivors to rebuild a meaningful life after stroke

Purpose: Rebuilding one’s life after stroke is a key priority persistently identified by patients yet professionally led interventions have little impact. This co-design study constructs and tests a novel peer-led coaching intervention to improve post-stroke leisure and general social participation. Methods: This study followed the principles of co-design by actively engaging and harnessing the knowledge of stroke survivors in order to develop and test a peer-lead coaching intervention. Phase 1 assessed function, mood, and involvement in leisure and social activities 6 months following stroke (n = 79). Phase 2 involved semi-structured, in-depth interviews with 18 stroke survivors, and 10 family carers to explore experiences related to social and leisure participation. Phase 3 tested the co-designed peer-led coaching intervention. Data collected also included co-design feedback sessions and a training workshop with selected peer coaches and in addition, interviews with stroke survivors and their peer coaches at two time-points: following the training program (n = 5) and delivery of the intervention (n = 2). Results: A peer-coaching intervention was successfully co-designed and tested combining the use of lay knowledge sociocognitive and self-regulatory theories with principles of transformational leadership theory. Both peers and stroke survivors reported having benefited at a personal level. Conclusions: This study reports on an innovative community-based and peer-led intervention and its results have generated new evidence on how stroke survivors engage with and respond to peer coaching support. It further provides a theoretical platform for designing and implementing peer interventions. Hence, these results have the potential to inform the development of future peer coaching intervention not only for stroke rehabilitation but also for a wide range of chronic conditions.Implications for rehabilitation The results of this co-design study, if replicated and extended, provide a theoretical framework to guide rehabilitation professionals about the optimal timing of peer-coaching interventions and contextual factors that need to be taken into account. Applying transformational leadership theory principles to the training of peers may prove useful at the time of the implementation of a coaching intervention. Peer-led coaching interventions, which are community-based and tailored to stroke survivors at the time of discharge, may help support re-engagement in social and leisure activities.

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A nurse-led health coaching intervention for stroke survivors and their family caregivers in hospital to home transition care in Chongqing, China: a study protocol for a randomized controlled trial

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.

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“Caregiving is a full‐time job” impacting stroke caregivers' health and well‐being: A qualitative meta‐synthesis

Family caregivers contribute to the sustainability of healthcare systems. Stroke is a leading cause of adult disability and many people with stroke rely on caregiver support to return home and remain in the community. Research has demonstrated the importance of caregivers, but suggests that caregiving can have adverse consequences. Despite the body of qualitative stroke literature, there is little clarity about how to incorporate these findings into clinical practice. This review aimed to characterise stroke caregivers' experiences and the impact of these experiences on their health and well‐being. We conducted a qualitative meta‐synthesis. Four electronic databases were searched to identify original qualitative research examining stroke caregivers' experiences. In total, 4,481 citations were found, with 39 studies remaining after removing duplicates and applying inclusion and exclusions criteria. Articles were appraised for quality using the Critical Appraisal Skills Programme (CASP), coded using NVivo software, and analysed through thematic synthesis. One overarching theme, ‘caregiving is a full‐time job’ was identified, encompassing four sub‐themes: (a) restructured life, (b) altered relationships, (c) physical challenges, and (d) psychosocial challenges. Community and institution‐based clinicians should be aware of the physical and psychosocial consequences of caregiving and provide appropriate supports, such as education and respite, to optimise caregiver health and well‐being. Future research may build upon this study to identify caregivers in most need of support and the types of support needed across a broad range of health conditions.

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The lived experience of supporting people with mild stroke

Background: Mild stroke occurrences are rising and in order to comprehensively understand the experience of this health phenomenon, the context in which people with mild stroke live must be explored. Spouses are an important part of the lives of this population, but their experiences are yet to be fully understood. Aims/Objectives: To answer the question: “What is the essence of the mild stroke experience from the perspective of spouses during the first 9-months after acute hospital discharge, in Australia?” Materials and Methods: Qualitative study involving four spouses at 9-months post-acute hospital discharge for their family member. Interpretative phenomenological analysis used to analyze interview transcripts. Results: Two themes identified: (1) Activities gained but time lost, and (2) Small changes but big impacts. The first theme portrays the increase in daily activity that spouses experienced due to caregiving related activities, which impacted on their occupational participation. The second highlights the impact that people with mild strokes’ behavioral and emotional changes can have on spouses. Conclusions and Significance: Whilst spouses generally return to their daily routines after a family members’ mild stroke, some will experience increased time pressures and occupational disruptions. Health providers should prepare spouses for behavioral and emotional changes in people with mild stroke. 

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Adaptation and Validation of the Capacity Scale for Informal Caregivers of Elderly Stroke Patients to be Used in Brazil

Background and Purpose: The Portuguese instrument for informal caregivers' skills providing care of aged people after a stroke (ECPICID-AVC) evaluates the capacities that informal caregivers must have for supporting aged stroke survivors. The purpose was to adapt and validate the ECPICID-AVC to be used in Brazil. Methods: A methodological study was conducted. Results: The terms with the lowest degree of comprehension were adapted. The factor analysis suggested the exclusion of three items and that the remaining be grouped into six domains. The factor loadings varied from 0.525 to 0.924. The internal intra-assessor consistency was satisfactory (ICC = 0.94, CI 95%). Total reliability was considered excellent (Cronbach's alpha = 0.914). Conclusions: The ECPICID-AVC is considered appropriate for using in Brazil.

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Factors associated with suicidal ideation in caregivers of stroke survivors

Objective: to identify factors associated with the presence of suicidal ideation in caregivers of stroke survivors. Methods: cross-sectional survey conducted with 151 primary informal caregivers. The Depression Anxiety and Stress Scale-21 and a questionnaire were used to evaluate the presence of thoughts of suicidal ideation, whose data were analyzed by descriptive and inferential statistics. Results: most caregivers had normal levels of depression (76.8%), anxiety (76.2%) and stress (79.5%), and showed no thoughts of suicidal ideation (70.9%). The correlation between scales showed that thoughts of suicidal ideation rise proportionally to the increase of anxiety, depression and stress levels. Conclusion: it was observed that high levels of depression, anxiety and stress favored the increased frequency of suicidal thoughts among caregivers of stroke survivors.

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Recovering together: Building resiliency in dyads of stroke patients and their caregivers at risk for chronic emotional distress; A feasibility study

Background: A stroke is a sudden, life-altering event with potentially devastating consequences for survivors and their loved ones. Despite advances in endovascular and neurocritical care approaches to stroke treatment and recovery, there remains a considerable unmet need for interventions targeting the emotional impact of stroke for both patients and their informal caregivers. This is important because untreated emotional distress becomes chronic and negatively impacts quality of life in both patients and caregivers. Our team previously used mixed methods to iteratively develop a six-session modular dyadic intervention to prevent chronic emotional distress in patients with stroke and their informal caregivers called "Recovering Together" (RT) using feedback from dyads and the medical team. The aim of the current study is to test the feasibility of recruitment, acceptability of screening and randomization methods, acceptability of RT, satisfaction with RT, feasibility of the assessment process at all time points, and acceptability of outcome measures. Secondarily, we aimed to explore within-treatment effect sizes and change in clinically significant symptoms of depression, anxiety, and post-traumatic stress (PTS). The larger goal was to strengthen methodological rigor before a subsequent efficacy trial. Methods: We conducted a feasibility randomized controlled trial to evaluate the RT intervention relative to minimally enhanced usual care (MEUC) in stroke patients admitted to a Neurosciences Intensive Care Unit (Neuro-ICU). Dyads were enrolled within 1 week of hospitalization if they met specific eligibility criteria. Assessments were done via paper and pencil at baseline, and electronically via REDCap or over the phone at post-intervention (approximately 6 weeks after baseline), and 3 months later. Assessments included demographics, resiliency intervention targets (mindfulness, coping, self-efficacy, and interpersonal bond), and emotional distress (depression, anxiety, and PTS). Primary outcomes were feasibility and acceptability markers. Secondary outcomes were depression, anxiety, PTS, mindfulness, coping, self-efficacy, and interpersonal bond. Results: We consented 20 dyads, enrolled 17, and retained 16. Although many patients were missed before we could approach them, very few declined to participate or dropped out once study staff made initial contact. Feasibility of enrollment (87% of eligible dyads enrolled), acceptability of screening, and randomization (all RT dyads retained after randomization) were excellent. Program satisfaction (RT post-test M = 11.33/12 for patients M = 12/12 for caregivers), and adherence to treatment sessions (six of seven RT dyads attending 4/6 sessions) were high. There were no technical difficulties that affected the delivery of the intervention. There was minimal missing data. For both patients and caregivers, participation in RT was generally associated with clinically significant improvement in emotional distress symptoms from baseline to post-test. Participation in MEUC was associated with clinically significant worsening in emotional distress. Although some of the improvement in emotional distress symptoms decreased in the RT group between post-test to 3 months, these changes were not clinically significant. RT was also associated with substantial decrease in frequency of individuals who met criteria for clinically significant symptoms, while the opposite was true for MEUC. There were many lessons that informed current and future research. Conclusions: This study provided evidence of feasibility and signal of improvement in RT, as well as necessary methodological changes to increase recruitment efficiency before the future hybrid efficacy-effectiveness trial. Trial registration: NCT02797509. © 2020 The Author(s).

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The readiness of family in treating post-stroke patients at home: A literature review

Objective: The aims of this systematic review are to review studies on the patient's family readiness in caring for stroke patients at home, the instruments used to assess family readiness and the factors that influence family readiness. Methods: The method used is an electronic database that has been published through PubMed, ScienceDirect, and Wiley online library. The keywords used for article searching is based on the study question. Results: The review of six research articles stated that family readiness in stroke patients is essential to note that the instrument most often used in family preparedness assessments is the Preparedness Caregiver Scale (PCS) instrument. Factors that influence family readiness include Pre-stroke caregiver experience, the strength of caregiver relationships with patients, family understanding and involvement in care, caregiver roles and responsibilities. Conclusion: Family preparedness assessment is critical to note especially for health workers, and the selection of the right instruments will significantly affect the caregiver's family readiness in treating stroke patients at home.

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Interpersonal relationship challenges among stroke survivors and family caregivers

A strong interpersonal relationship after stroke is important for the well-being of survivors and family caregivers. However, as many as 54% of families experience relationship problems after stroke and as many as 38% of couples experience overt conflict. The purpose of this study is to enhance understanding about relationship challenges among stroke dyads and to identify implications for direct practice in social work. Semi-structured interviews were conducted with N = 19 care dyads. Qualitative data were analyzed through an interpretive description lens. Seven themes about relationship challenges were identified. Findings highlight areas to consider in promoting strong relationships between survivors and family caregivers. Social workers may have the opportunity to assist dyads with disrupting negative communication cycles, strengthening empathy and collaboration, and achieving a balance so that each person's needs are met.

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Depressive Symptoms After Ischemic Stroke: Population-Based Comparisons of Patients and Caregivers With Matched Controls

Background and Purpose- Persistent depression after ischemic stroke is common in stroke survivors and may be even higher in family caregivers, but few studies have examined depressive symptom levels and their predictors in patient and caregiver groups simultaneously. Methods- Stroke survivors and their family caregivers (205 dyads) were enrolled from the national REGARDS study (Reasons for Geographic and Racial Differences in Stroke) into the CARES study (Caring for Adults Recovering from the Effects of Stroke) ≈9 months after a first-time ischemic stroke. Demographically matched stroke-free dyads (N=205) were also enrolled. Participants were interviewed by telephone, and depressive symptoms were assessed with the 20-item Center for Epidemiological Studies-Depression scale. Results- Significant elevations in depressive symptoms (Ps<0.03) were observed for stroke survivors (M=8.38) and for their family caregivers (M=6.42) relative to their matched controls (Ms=5.18 and 4.62, respectively). Stroke survivors reported more symptoms of depression than their caregivers (P=0.008). No race or sex differences were found, but differential prediction of depressive symptom levels was found across patients and caregivers. Younger age and having an older caregiver were associated with more depressive symptoms in stroke survivors while being a spouse caregiver and reporting fewer positive aspects of caregiving were associated with more depressive symptoms in caregivers. The percentage of caregivers at risk for clinically significant depression was lower in this population-based sample (12%) than in previous studies of caregivers from convenience or clinical samples. Conclusions- High depressive symptom levels are common 9 months after first-time ischemic strokes for stroke survivors and family caregivers, but rates of depressive symptoms at risk for clinical depression were lower for caregivers than previously reported. Predictors of depression differ for patients and caregivers, and standards of care should incorporate family caregiving factors.

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Canadian Stroke Best Practice Recommendations: Rehabilitation, Recovery, and Community Participation following Stroke. Part Two: Transitions and Community Participation Following Stroke

The sixth update of the Canadian Stroke Best Practice Recommendations for Transitions and Community Participation following Stroke is a comprehensive set of evidence-based guidelines addressing issues faced by people following an acute stroke event. Establishing a coordinated and seamless system of care that supports progress achieved during the initial recovery stages throughout the transition to the community is more essential than ever as the medical complexity of people with stroke is also on the rise. All members of the health-care team engaged with people with stroke, their families, and caregivers are responsible for partnerships and collaborations to ensure successful transitions and return to the community following stroke. These guidelines reinforce the growing and changing body of research evidence available to guide ongoing screening, assessment, and management of individuals following stroke as they move from one phase and stage of care to the next without "falling through the cracks." It also recognizes the growing role of family and informal caregivers in providing significant hours of support that disrupt their own lives and responsibilities and addresses their support and educational needs. According to Statistics Canada, in 2012, eight million Canadians provided care to family members or friends with a long-term health condition, disability, or problems associated with aging. These recommendations incorporate aspects that were previously in the rehabilitation module for the purposes of streamlining, and both modules should be reviewed in order to provide comprehensive care addressing recovery and community reintegration and participation. These recommendations cover topics related to support and education of people with stroke, families, and caregivers during transitions and community reintegration. They include interprofessional planning and communication, return to driving, vocational roles, leisure activities and relationships and sexuality, and transition to long-term care.

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Stroke Survivor and Family Caregiver Reports of Caregiver Engagement in Stroke Care

Purpose: The aim of the study was to identify areas of caregiver engagement in stroke care as viewed by stroke survivors and family caregivers.; Design: Interviews with stroke survivor/caregiver dyads (N = 71) from a population-based study of incident stroke.; Methods: We interviewed stroke survivors and caregivers about caregiver involvement at multiple stages of stroke care. We assessed similarities and differences between stroke survivor and caregiver reports and analyzed responses to open-ended questions.; Findings: Stroke survivor and caregiver reports of engagement were highly correlated (r = .89), although caregivers reported higher involvement. Open-ended comments suggested that, in about 25% of cases, stroke survivors and caregivers agreed that caregiver engagement led to major improvements in stroke survivor care, most commonly during onset of symptoms.; Conclusions: Stroke survivors and caregivers report significant and impactful caregiver engagement throughout the course of stroke.; Clinical Relevance: Clinicians may enhance stroke care by recognizing and facilitating caregiver efforts across all phases of stroke care.

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Implementing Caregiver Support Programs in a Regional Stroke System

Background and Purpose- Family caregivers play a central role in the recovery of people with stroke. They need support to optimize the care they provide and their own health and well-being. Despite support from the literature and best practice recommendations, healthcare systems are not formally adopting caregiver programs. This study aimed to describe system-level facilitators and barriers to caregiver support program implementation in a regional stroke system. Methods- Using a qualitative descriptive study design, focus groups were conducted with regional rehabilitation specialists, education coordinators, community and long-term care specialists, and regional/district program directors. Semi-structured interviews were conducted with regional medical directors, health professionals providing stroke care in acute care, rehabilitation and community settings, regional health executives, and primary care leaders. Data were analyzed using inductive thematic analysis. Results- Four focus groups (n=43) and 29 interviews were conducted. We identified 4 themes related to caregiver program implementation: (1) establishing the need for caregiver education and support in an integrated healthcare system; (2) incorporating caregiver programs into the system of care across the care continuum; (3) uncertainty regarding ownership and responsibility for implementation; and (4) addressing regional variations related to access, availability, and culture. Conclusions- This study provides a comprehensive understanding of organization and system-level considerations for implementing caregiver programs in a regional stroke system. Program implementation requires evidence to establish the need for caregiver programs, practical strategies, and establishing ownership to incorporate programs into existing healthcare systems, and consideration of regional variations across healthcare systems. Ultimately, adopting programs to support caregivers will improve recovery in people with stroke and caregiver well-being.

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Family experience in providing support and the achieving of post-stroke late adulthood development

Objectives: Supporting the achievement of post-stroke late adulthood development is a unique experience that impacts heavily on families. The purpose of this study was to provide an overview of family experience in providing support post-stroke to a family member and enabling them to achieve late adulthood development and then to interpret this.; Method: The research used a qualitative design with a descriptive phenomenology approach. The participants were 14 caregivers of the elderly.; Results: The results (1) the impact of the bio-psycho-socio-spiritual on the elderly post-stroke survivor, (2) how the family fulfills the needs of the post-stroke elderly person, (3) the impact of the post-stroke period on the elderly by family members, (4) the achievement of post-stroke late adulthood development by family members, and (5) the meaning of providing care for the post-stroke elderly survivor.; Conclusions: This research identified 5 themes and recommendations are that psychoeducation for the carers of stroke survivors should be improved.

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Factors associated with willingness to use eRehabilitation after stroke: A cross-sectional study among patients, informal caregivers and healthcare professionals

Objective: Despite the increasing availability of eRehabilitation, its use remains limited. The aim of this study was to assess factors associated with willingness to use eRehabilitation.; Design: Cross-sectional survey.; Subjects: Stroke patients, informal caregivers, health-care professionals.; Methods: The survey included personal characteristics, willingness to use eRehabilitation (yes/no) and barriers/facilitators influencing this willingness (4-point scale). Barriers/facilitators were merged into factors. The association between these factors and willingness to use eRehabilitation was assessed using logistic regression analyses.; Results: Overall, 125 patients, 43 informal caregivers and 105 healthcare professionals participated in the study. Willingness to use eRehabilitation was positively influenced by perceived patient benefits (e.g. reduced travel time, increased motivation, better outcomes), among patients (odds ratio (OR) 2.68; 95% confidence interval (95% CI) 1.34-5.33), informal caregivers (OR 8.98; 95% CI 1.70-47.33) and healthcare professionals (OR 6.25; 95% CI 1.17-10.48). Insufficient knowledge decreased willingness to use eRehabilitation among patients (OR 0.36, 95% CI 0.17-0.74). Limitations of the study include low response rates and possible response bias.; Conclusion: Differences were found between patients/informal caregivers and healthcare professionals. However, for both groups, perceived benefits of the use of eRehabilitation facilitated willingness to use eRehabilitation. Further research is needed to determine the benefits of such programs, and inform all users about the potential benefits, and how to use eRehabilitation.

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Effectiveness of Family-Engaged Multidimensional Team Planning and Management for Recovery in Patients With Severe Stroke and Low Functional Status

Objective To evaluate the effectiveness of family-engaged multidimensional team planning and management for patients with severe stroke and low functional status and to identify factors predictive of improved outcome at 1 month after admission. Methods We retrospectively evaluated 50 patients who underwent family-engaged multidimensional rehabilitation for recovery from severe stroke due to primary unilateral cerebral lesions. The rehabilitation consisted of three phases: comprehensive multidimensional assessment, intensive rehabilitation, and evaluation. Functional Independence Measure (FIM) scores were calculated and used to predict the patients’ status at discharge. Results Although all FIM scores significantly improved after 1 month of rehabilitation, the motor FIM (mFIM) score improved the most (from 20.5±1.0 to 32.6±2.0). The total FIM (tFIM) and mFIM scores continued to improve from the first month to discharge (mean mFIM efficiency, 0.33). The high-efficiency patient group (mFIM efficiency ≥0.19) had a significantly higher discharge-to-home rate (44% vs. 13%), lower frequency of hemispatial neglect, and more severe finger numbness than the low-efficiency patient group (mFIM efficiency <0.19). The regression analyses revealed that besides lower mFIM and cognitive FIM scores at admission, unilateral spatial neglect, systemic comorbidities, and age were predictive of worse 1-month outcomes and tFIM scores (conformity, R²=0.78; predictive power, Akaike information criterion value=202). Conclusion Family-engaged multidimensional team planning and management are useful for patients with severe stroke and low functional status. Furthermore, FIM scores at admission, age, unilateral spatial neglect, and systemic comorbidities should be considered by rehabilitation teams when advising caregivers on the probability of favorable outcomes after rehabilitation.

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Dyadic approach to post-stroke hospitalizations: role of caregiver and patient characteristics

Aim: To study the association of caregiver factors and stroke patient factors with rehospitalizations over the first 3 months and subsequent 3-12 months post-stroke in Singapore.; Methods: Patients with stroke and their caregivers were recruited in the Singapore Stroke Study, a prospective yearlong cohort. While caregiver and patient variables were taken from this study, hospitalization data were extracted from the national claims database. We used Poisson modelling to perform bivariate and multivariable analysis with counts of hospitalization as the outcome.; Results: Two hundred and fifty-six patient with stroke and caregiver dyads (N = 512) were analysed, with patients having spouse (60%), child (29%), sibling (4%) and other (7%) as their caregivers. Among all participants, 89% of index strokes were ischemic, 57% were mild in severity and more than half (59%) of the patients had moderate or severe disability post-stroke as measured on the Modified Rankin Scale. Having social support in the form of a foreign domestic worker for general help of caregiver reduced the hospitalization rate over 3 months post-stroke by 66% (IRR: 0.342; 95% CI: 0.180, 0.651). Compared to having a spousal caregiver, those with a child caregiver had an almost three times greater rate of hospitalizations over 3-12 months post-stroke (IRR: 2.896; 95% CI: 1.399, 5.992). Higher reported caregiving burden at the 3-month point was associated with the higher subsequent rate of hospitalization.; Conclusion: Recommendations include the adoption of a dyadic or holistic approach to post-stroke care provision by healthcare practitioners, giving due importance to both patients with stroke and their caregivers, integrating caregivers in the healthcare system to extend the care continuum to include informal care in the community and provision of timely support for caregivers.

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Determining the Needs of Family Caregivers of Stroke Patients During Inpatient Rehabilitation Using Interview, Art, and Survey

The purpose of this study is to explore the needs of family members at the bedside of stroke patients (n = 12) admitted to an inpatient rehabilitation facility (IRF). Family members' needs were determined through semistructured interviews, "Draw a Bridge" art therapy technique, and the Family Inventory of Needs. Family members described a family-centered approach to care that addressed the following needs: assistance with preparing for discharge, staff caring for family members, communication about the plan of care and what to expect postdischarge, and trusting the care provided by IRF staff. Art therapy revealed that stroke was a crisis with many unmet needs for the interviewer to explore. Descriptive statistical analysis of the Family Inventory of Needs revealed that both met and unmet needs were consistent with the interviews and the interpretations of the drawings. These findings inform the need for interventions during IRF to enhance communication, support, and effective caregiver education amidst the crisis of stroke.

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Contradiction, Similarity, and Uncovered Factors of Depression among Post-Stroke Patients Family-Caregivers

Background: Family caregivers of post-stroke patients face many challenges that may result in depressive symptoms and ineffective care performance. This generates a negative correlation spiral related to the quality of life for both family caregivers and patients. Examining factors related to depressive symptoms among family caregivers is necessary to develop effective care and education programs. Objective: The study aimed to identify the contradictions, similarity, and uncovered factors related to depressive symptoms scores among family caregivers through comparison of examined variables. Methodology: A literature search from December 1988 to March 2016 was carried out using CINAHL and PubMed databases. The initial search found 84 articles. After eliminating duplicates and screening based on inclusion and exclusion criteria, 16 articles were reviewed. Results: Three main factors found were: (1) contradictory factors which included gender, family relationship status, and depressive symptoms scores between caregivers and stroke patients, (2) Similarity factors which included race, age, caregiving burden of family caregivers, functional status of stroke patient, and (3) uncovered factors which included the role of nurses, spiritual value, knowledge of depressive symptoms, conducive living environment, and types of family structure. Conclusions: The contradictions of findings and uncovered factors observed be used as evidence for subsequent investigations. Gender, the different roles of family, relationship, and the severity of stroke should be considered in identifying depressive symptoms among family caregivers in the early stages during hospitalization. Nurses have an important role to identify depressive symptoms because of their active role and greater interaction with family caregivers compared with other health professionals. Implication for nursing and health policy: The study findings highlights the important factors to consider and use in developing health policy related to family education program and early screening for depressive symptoms to reduce and prevent depressive symptoms among family caregivers.

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Burden of Care and Quality of Life in Home Caregivers of Patients With Stroke in Iran

The purpose of this study was to investigate the relationship between Burden of Care and Quality of Life in informal home caregivers of stroke patients in Iran. Also we were trying to explore the factors that affect the burden of care. In this cross-sectional study, we have selected 62 informal home caregivers of the patients admitted to "the stroke outpatient unit of the neurology clinic" of the central hospital in Semnan province, Iran, to take part in the investigation. We interviewed them using the Caregiver Burden Inventory and SF-36 Questionnaire for assessing their quality of life. There was a negative and significant correlation between different aspects of quality of life and burden of care. In the bivariate regression model, being married and having lower levels of education (minimum years of schooling) were associated with higher levels of the burden. Our study shows that increasing burden of care in informal home caregivers reduces the quality of life in all domains. Thus, the results of this study indicate that an increase in the burden of caregiving on caregivers lowers their quality of life in all aspects; especially, caregivers who provide care to their spouses encountered more burden. Therefore, these caregivers must be in the center of interest while planning to reduce the burden of care.

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Nurses striving to provide caregiver with excellent support and care at a distance: a qualitative study

BACKGROUND: In Norway, changes in life expectancy have led to increased attention to older people who are ageing at home, by means of home care services, adapted technology and informal caregivers. The caring situation has become difficult for many caregivers. The use of telecare has now offered them the possibility to receive support at home. The purpose of this study was to explore how nurses provide support and care at a distance, using a web camera and a web forum in a closed telecare network for caregivers to persons suffering from stroke and dementia. METHODS: The study had an explorative design with a qualitative approach. The data sources consisted of interviews with nurses and excerpts from posts in a closed telecare network. Content analysis was used to analyse the text from the interviews and the text from the web forum. RESULTS: The main theme, "Balancing asymmetric and symmetric relationships" described nurses' relationship with caregiver. Two categories, "Balancing personal and professional qualities" and "Balancing caregivers' dependence versus independence" were identified. The first describing the tension in their dialogue, the second describing how nurses provided the caregivers with a sense of security as well as strengthening them to master their daily lives. CONCLUSIONS: The nurses provided long distance support and care for the caregivers, by using computer-meditated communication. This communication was characterized by closeness as well as empathy. To strengthen the caregivers' competence and independence, the nurses were easy accessible and provided virtual supervision and support. This study increases the knowledge about online dialogues and relationship between nurses and caregivers. It contributes to knowledge about balancing in the relationship, as well as knowledge about bridging the gap between technologies and nursing care as potential conflicting dimensions. Maintenance of ethical principles are therefore critical to be aware of.

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Development and validation of a quality of relationship intervention for stroke survivor-family caregiver dyads

Background: The relationship between stroke survivors and family caregivers is critical for the well-being of both dyad members. Currently, there are few interventions targeted at dyads and focused on strengthening the relationship between survivors and family caregivers. Objectives: This study reports on the development of a customizable, strengths-based, relationship-focused intervention driven by the real-world experience and advice of stroke dyads. It also describes the "tips" that survivors and family caregivers offered for dealing with relationship challenges after stroke. Methods: Content of the intervention, including relationship tips, was derived from semi-structured interviews with N= 19 stroke dyads. A modified Delphi process with a national panel of 10 subject matter experts was used to evaluate and refine the content of the intervention and the associated screening tool. Results: Seventeen domains of relationship challenges and tips were identified. Consensus was reached among experts that the intervention content was relevant to the goal of helping survivors and family caregivers maintain a strong relationship after stroke; (2) clear from the perspective of stroke survivors and family caregivers who would be using it; (3) accurate with respect to the advice being offered, and; (4) useful for helping stroke survivors and family caregivers improve the quality of their relationship. Conclusions: This study extends the limited body of research about dyadic interventions after stroke. The next steps in this line of research include feasibility testing the intervention and evaluating its efficacy in a larger trial.

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Effect of a Passive Intervention on Carers of Stroke Survivors During the Early Poststroke Period

BACKGROUND: Care partners of stroke survivors are often characterized by high burden levels and depression. Passive and active interventions have been proposed to help reduce burden and depression. The aim of this quality improvement report was to evaluate the effects of a single passive intervention on reported burden and depression in carers of stroke survivors. METHODS: A quality improvement report was conducted on carers who participated in a short passive intervention (n = 56) and a control group (n = 44). The Family Strain Questionnaire-Short Form (FSQ-SF) and the Beck Depression Inventory II were administered in both groups at patients' admission and before discharge, with the intervention taking place between the 2 data collection periods. RESULTS: No significant difference between groups was observed in FSQ-SF score and prevalence of depression at admission and in FSQ-SF at discharge. However, compared with admission, FSQ-SF at discharge was significantly reduced only in the intervention group (pre: 14, and interquartile range, 12-15; post: 9, and interquartile range, 9-13; P < .01). Moreover, a smaller proportion of carers classified as "depression" was found at discharge in the intervention group compared with controls (4% vs 28%, respectively; P < .01). CONCLUSION: Results encourage the development and use of short passive intervention to reduce burden and depression in care partners of stroke survivors.

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How to improve eRehabilitation programs in stroke care? A focus group study to identify requirements of end-users

Background: A user-centered design approach for eHealth interventions improves their effectiveness in stroke rehabilitation. Nevertheless, insight into requirements of end-users (patients/informal caregivers and/or health professionals) for eRehabilitation is lacking. The aim of this study was to identify end-user requirements for a comprehensive eHealth program in stroke rehabilitation. Methods: Eight focus groups were conducted to identify user requirements; six with patients/informal caregivers and two with health professionals involved in stroke rehabilitation (rehabilitation physicians, physiotherapists, occupational therapists, psychologists, team coordinators, speech therapist). The focus groups were audiotaped and transcribed in full. Direct content analysis was used to identify the end-user requirements for stroke eHealth interventions concerning three categories: accessibility, usability and content. Results: In total, 45 requirements for the accessibility, usability and content of a stroke eRehabilitation program emerged from the focus groups. Most requirements concerned content (27 requirements), followed by usability (12 requirements) and accessibility (6 requirements). Patients/informal caregivers and health professionals each identified 37 requirements, respectively, with 29 of them overlapping. Conclusions: Requirements between stroke patients/informal caregivers and health professionals differed on several aspects. Therefore, involving the perspectives of all end users in the design process of stroke eRehabilitation programs is needed to achieve a user-centered design. Trial registration: The study was approved by the Medical Ethical Review Board of the Leiden University Medical Center [P15.281].

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Predictors of caregiver burden after stroke in Nigeria: Effect on psychosocial well-being

Background: Family caregivers (CGs) are critical to the care and recovery of stroke survivors (SSs), particularly in the community. However, little is known about their psychosocial well-being, especially in developing countries. In this study, we assessed CG burden, psychiatric morbidity, quality of life (QoL), and predictors of burden. Materials and Methods: We recruited 150 dyads of CGs/SSs from two outpatient clinics in Nigeria. Data were collected through sociodemographic/clinical questionnaire, the Zarit caregiver burden interview, the World Health Organization QoL-BREF, and the Mini-International Neuropsychiatric Interview. Disability in SSs was graded with the Modified Rankin Scale. Results: Compared to CGs who were mostly females (86.7%) with a mean age of 42.8 (±12.6) years, SSs were older with a mean age of 61.6 (±12.5) years and were mainly males (62.7%). The mean CG burden score was 31.6 (±10.5) and eight in 10 CGs, 124 (82.7%) reported moderate-to-severe burden scores. Mental disorders in the form of depression and/or anxiety disorders were diagnosed in 26 (17.3%) CGs. Significant predictors of high-burden scores (P < 0.05) were incontinence in SSs, psychological symptoms in SS, worse poststroke disability, and performance of more CG tasks (B = 8.3, 4.5, 3.9, and 3.5, respectively). CGs QoL scores correlated negatively with burden scores, with medium-to-large effect sizes (r =-0.4-0.6) across QoL spheres. Conclusion: In this study, psychosocial burden in CGs was indexed by various determinants and impacted QoL negatively. Given the integral role of CGs to the care of SSs in the community, mental health services, psychosocial support programs, and stratification based on known vulnerability factors seems viable options for intervention, assessment, and planning. 

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Correlates of social support on report of probable common mental disorders in Zimbabwean informal caregivers of patients with stroke: A cross-sectional survey

Objective: Stroke is a major global public health burden. Unfortunately, stroke invariably leads to functional limitations, consequently, most stroke survivors are hugely dependent on family members/informal caregivers in carrying out essential daily activities. The increased demands of caregiving negatively impact caregivers' mental health. Nevertheless, caregivers who receive an adequate amount of social support are likely to adjust better to the caregiving role. We sought to determine the impact of social support on the mental wellbeing of 71 caregivers of patients with stroke in Zimbabwe, a low-resourced country. Results: The mean caregiver age was 41.5 (SD 13.8) years. Patients had a mean age of 65.2 (SD 15.3) years with most being functionally dependent (93.2%). 45.1% of the caregivers showed excessive psychiatric morbidity. The mean Multidimensional Scale of Perceived Social Support (MSPSS) score was 44 (SD 9.4), denoting high levels of social support. Caregivers who received an adequate amount of social support were likely to report of lower psychiatric morbidity (Rho = - 0.285, p = 0.016). Furthermore, caregiver who were; poorer, were caring for more functionally-dependent patients, and did not receive additional assistance were likely to report of poor mental health functioning. There is therefore a strong need to implement context-specific caregivers wellness programs. 

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Optimizing Participation of Older Adults with Cognitive Deficits Post-stroke: Types of Help and Caregiver Burden

This longitudinal mixed-method study examined the types of help provided by caregivers to optimize participation of older adults with cognitive deficits post-stroke (care recipients), and how these types of help varied with caregiver's burden. Twelve family caregivers of care recipients post-stroke completed a burden questionnaire and semi-structured interviews one month, three months, and six months following care recipient's discharge home from acute care, rehabilitation, or day hospital. Care recipients completed cognitive tests and a social participation questionnaire. Types of help caregivers provided differed according to the amount of daily living support, degree of concern for care recipient's well-being, and impact on caregivers' social life. Interestingly, types of help fostering care recipient's social participation, self-esteem, and abilities were unrelated to a negative impact on caregivers' social life. Understanding how different types of help relate to caregiver burden could improve the types of help to optimize care recipients' social participation without overburdening caregivers

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Informal caregivers in stroke: Life impact, support, and psychological well-being-A Swedish Stroke Register (Riksstroke) study

Background: Informal caregivers provide a large amount of day-to-day assistance and are crucial for the ability of survivors to recover and adapt to life after stroke.; Aim: The development of caregiver support programs is limited by lack of large long-term follow-up studies. We present a comprehensive study of Swedish stroke caregivers' life situation in relation to degree of functional dependency of the survivor.; Patients and Methods: In 2016, the Swedish Stroke Register, Riksstroke, conducted a long-term follow-up survey on caregivers to patients with stroke three and five years earlier. Items on psychological well-being were adapted from the 36-item short-form health survey and poor outcome was defined using the 36-item short-form health survey reference material. Survivor degree of dependency was indicated by the caregiver as independent, partially dependent, or completely dependent.; Results: A total of 5063 community dwelling dyads were included: 56.5% of survivors were independent, 33.4% partially dependent, and 10.1% completely dependent. Caregiver life impact, need of support, and proportion of poor psychological well-being increased incrementally with survivor degree of dependency. In the completely dependent group where 41.1% of survivors could not be left unattended for more than 1 h, 23.7% of caregivers expressed unmet need of caregiver support; 51.4% reported poor psychological well-being compared to 19.3% in the independent group.; Conclusion: The caregiver situation varies greatly with degree of survivor dependency which makes generalizations of caregiver needs difficult. Our results emphasize the need for integrating support aimed specifically at caregivers to survivors of stroke with a large degree of dependency.

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Effectiveness of Structured Teaching Programme on the Knowledge about Rehabilitation of Stroke Patients among Caregivers in a Selected Hospital, Kolkata, India

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. 

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Factors predicting the health status of caregivers of stroke survivors: A cross-sectional study

In this cross-sectional study, we aimed to determine factors influencing the health status of caregivers of stroke survivors. A total of 126 caregivers of stroke survivors were recruited from three outpatient clinics in Thai Nguyen National General Hospital, Vietnam, from November 2016 to March 2017. Data were collected through six instruments: a demographic questionnaire, the Modified Barthel Index, the Zarit Burden Interview Scale, the Multidimensional Scale of Perceived Social Support, the Family Caregiver Conflict Scale, and the Short Form-36 Health Survey. Stepwise multiple regression was employed to analyze the data. Caregiver burden, patient's functional status, caregiver's age, and social support together explained 80.3% of the variations in health status of caregivers of stroke survivors. Caregiver burden was the strongest predictor of health status of these caregivers. Based on the findings, nurses should take caregiver's age, functional status of stroke survivors, caregiver burden, and social support into consideration when preparing family caregivers to provide care for stroke survivors. To reduce perceived caregiver burden, family support interventions should be embraced to enhance health status of the caregivers of stroke survivors.

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The use of carer perspectives and expert consensus to define key components of a biopsychosocial support intervention for stroke carers

Objective: To identify the key components of a biopsychosocial support intervention to improve mental wellbeing for informal stroke carers within the first year post-stroke based on the combined perspectives of experts in the field of psychological care after stroke and informal stroke carers themselves. Methods: After reviewing the existing literature a cross-sectional mixed-methods design was adopted comprising 1) focus groups with informal stroke carers about their psychological support needs, and 2) nominal group technique with academic and clinical stroke care experts to reach consensus on intervention priorities. Transcripts were thematically analyzed and combined with the ranked priorities from the nominal group to identify key components for intervention content. Results: Key themes for informal stroke carers were associated with: 1) changes in relationships, roles, and dynamics; 2) emotional impact and acceptance; 3) drawing on inner resources; 4) looking for information, solutions, and explanations; 5) support from others. The expert nominal group placed priority on eight ranked areas: 1) acknowledging "normal" emotions; 2) education about the effects of a stroke; 3) reactions to loss and adjustment; 4) recognizing signs and symptoms of not coping; 5) knowing how and when to access practical and emotional support; 6) strategies for taking care of own health; 7) dealing with difficult emotions; and 8) problem solving skills. Conclusions: Themes from the informal carer focus groups, and ranked priority areas will inform the development of a biopsychosocial support intervention for stroke carers to be tested in a feasibility randomized controlled trial.

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Quality of life perceptions of family caregivers of older adults stroke survivors: A longitudinal study

There are few formal outreach and out-patient support services to help family caring for older adults who have had a stroke in developing countries. Family caregivers experience negative changes in their quality of life. To assess quality of life perceptions of spouse and non-spouse caregivers of older adult stroke survivors. A longitudinal survey study. A convenience sample of forty-eight family caregivers was recruited from the Special Care Stroke Unit at a University Hospital in South Brazil. Quality of life was measured using the World Health Organization's Quality of Life BREF survey upon discharge from the hospital (Time 1) and two months after (Time 2). Non-spouse caregivers had the lowest Social Relationship scores at Time 1 (p <.001) and at Time 2 (p =.005), both in terms of personal relationship, the quality of their sex lives and support received from others. Unfortunately, formal community support programs for family caregivers in Brazil are lacking. Post-stroke caregiving is largely a family affair. Quality of Life assessments among family caregivers of older adult stroke survivors are crucial, particularly after discharge.

  • Non-spouse caregivers of older adults stroke survivors have lower quality of life regarding social relationships.
  • QOL among family caregivers should be assessed before and after discharge from a Stroke Care Unit.
  • Our findings provide knowledge of the QOL priorities of family caregivers and recommendations for nurse practitioners.
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“This is our life now. Our new normal”: A qualitative study of the unmet needs of carers of stroke survivors

Many stroke survivors require care from informal carers such as family members and friends who may experience adverse impacts. This study aimed to qualitatively explore the unmet needs of carers of stroke survivors, and their preferences for interventions and support services. We conducted 24 semi-structured, qualitative interviews with carers of stroke survivors from the Hunter region, Australia. Inductive thematic analysis was used in the context of a needs-led framework to identify key themes of their unmet needs. Key unmet needs identified by carers of stroke survivors in this study centred on four main themes: (1) social relationships and support; (2) adequacy of information; (3) taking care of oneself; and (4) accessing appropriate services. Carers of stroke survivors desired the development of services which provide connectivity to information, training, education and community support; and inclusion in a community with social relationships and other carers of stroke survivors. Ongoing unmet needs often result in adverse health and quality of life outcomes for carers of stroke survivors. Co-designed programs and resources for carers, particularly relating to unmet needs in social, information, self-care and service access domains are needed.

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Six mechanisms behind carer wellbeing effects: A qualitative study of healthcare delivery

Health and care services for patients may improve or harm the wellbeing of their family carers. Formal consideration of these effects (also known as spillovers) in decision-making is advocated, but, to date, little is known about how they occur. This paper presents the first empirical study to determine the mechanisms by which health and care services affect family carers' wellbeing. The study focused on three major health conditions: dementia, stroke, and mental health. Focus groups and interviews were conducted with 49 purposefully sampled care professionals and family carers in the UK between December 2016 and September 2017. Transcripts were coded and analysed thematically, using descriptive accounts and an explanatory account. The analysis generated six over-arching mechanisms by which health and care services affect family carers' wellbeing, through:

  • (i) information (degree to which service delivery informs and trains family carers)
  • (ii) management of care (shifts of responsibility for care between formal and family sectors)
  • (iii) patient outcomes (services changing patient outcomes)
  • (iv) alienation (feelings of alienation or inclusion created by service delivery)
  • (v) compliance (barriers to patients complying and engaging with services)
  • and (vi) timing or location (changes in the timing or location of services).

Each mechanism was associated with sub-themes relating to both positive and negative spillovers on the family carers. The six mechanisms can be summarised with the mnemonic ‘IMPACT’. The IMPACT mechanisms may be useful in designing and evaluating services to optimise the wellbeing of carers as well as patients. •First qualitative study to identify mechanisms behind family carer spillovers.•Mechanisms were ‘information’, ‘management’, ‘patient’, ‘alienation’, ‘compliance’, ‘timing’.•Summarised by mnemonic IMPACT and relevant across conditions.•Each mechanism generated positive and negative spillover.

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Determinants of caregiver burden of patients with haemorrhagic stroke in China

Aim: The aim of this study was to assess the caregiver burden over time of patients with haemorrhagic stroke and the determinants of this. Background: Identification of the predictors for caregiver burden can be used to improve the outcomes of stroke survivors and caregivers. Few studies focus on the caregiver burden of patients with haemorrhagic stroke and how this changes over time. Design This was a prospective longitudinal study. Methods: A convenience sample of 202 stroke survivor/caregiver pairs were recruited in the neurosurgery unit from March 2015 to March 2016. The participants were assessed at three different times by face to face or telephone interview. Caregiver burden was assessed using the Bakas Caregiver Outcomes Scale. Sociodemographic data and other characteristics of the pairs were also collected. Multiple linear regression was performed to identify the determinants. Results: Caregiver burden decreased from T1 to T3 significantly. The physical function, depression of stroke survivors, and self‐rated burden of caregivers were the most important determinants for overall caregiver burden. The factors identified explained 41.6% to 67.4% of overall burden. Conclusion: Caregiver burden decreased over time, affected by factors from patients and caregivers. More professional caregivers are needed to support informal carers. 

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Meaning in Stroke Family Caregiving in China: A Phenomenological Study

Meaning in caregiving plays an influential role in stroke family caregiver's perception and adaptation to caregiving. Although the role meaning plays in stroke family caregiving has been recognized, knowledge about this subject among the Chinese population is fragmented and sparse. Therefore, a hermeneutic phenomenological study was conducted as a first step in a program of research focused on Chinese caregivers utilizing a purposive sample of five stroke family caregivers living in China to explore the meaning of the lived caregiving experience. Data were collected through in-depth interviews and analyzed by a phenomenological hermeneutic interpretation. Meaning in stroke family caregiving was interpreted as suffering, an obligation, a personal choice, a meaningful opportunity, and a natural part of living. These meanings were dynamic and interconnected and were affected deeply by the Chinese culture in how caregivers experience, interpret, and cope with caregiving. Findings highlight the need to understand the culture-shaped meanings in caregiving to better support family caregivers and develop culturally tailored interventions.

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Effect of family education program on cognitive impairment, anxiety, and depression in persons who have had a stroke: A randomized, controlled study

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.

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Needs and rights awareness of stroke survivors and caregivers in urban and rural China: a cross-sectional, multiple-centre questionnaire survey

Objectives: Stroke survivors require assistance and support in their daily lives. This survey aims to investigate the needs and rights awareness in Chinese stroke survivors and caregivers in rural and urban settings.; Setting: This survey was adapted from the one created by the World Stroke Organization. The questionnaire included demands for psychological support, treatment and care, social support and information. From January 2015 to January 2016, the survey was pilot tested with urban and rural-dwelling stroke survivors and caregivers from 12 hospitals. Stroke survivors were invited to participate if they were over 18 years old and had experienced a stroke. Exclusion criteria were patients who had disorders of consciousness, significant cognitive impairment, aphasia, communication difficulties or psychiatric disorders. Only caregivers who were family members of the patients were chosen. Paid caregivers were excluded.; Participants: One thousand, one hundred and sixty-seven stroke survivors and 1119 caregivers were enrolled.; Primary Outcome Measures: The needs of stroke survivors and caregivers in rural and urban areas were compared. The correlations between needs of rural and urban stroke survivors and caregivers and potential effect factors were analysed, respectively.; Results: Among the cohort, 93.5% reported the need for psychological support, 88.6% for treatment and care, 84.8% for information and 62.7% for social support. The total needs and each aspect of needs of stroke survivors in urban settings were greater than of those in rural settings (p<0.01). In rural areas, total needs and each aspect of needs were positively correlated with education level (p<0.01).; Conclusions: Needs and rights awareness of stroke survivors should also be recognised in both urban and rural China. According to the different needs of patients and their caregivers, regional and individualised services were needed by stroke survivors and their caregivers.

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Stroke survivor cognitive decline and psychological wellbeing of family caregivers five years post-stroke: a cross-sectional analysis

Background: Family members frequently provide long-term care for stroke survivors, which can lead to psychological strain, particularly in the presence of cognitive decline.; Objectives: To profile anxious and depressive symptoms of family caregivers at 5 years post-stroke, and to explore associations with stroke survivor cognitive decline.; Methods: As part of a 5-year follow-up of the Action on Secondary Prevention Interventions and Rehabilitation in Stroke (ASPIRE-S) cohort of stroke survivors, family members completed a self-report questionnaire. Symptoms of anxiety and depression were assessed using the HADS-A and CES-D. Cognitive decline in stroke survivors was assessed from the caregiver's perspective using the IQCODE, with cognitive performance assessed by the MoCA. Data were analyzed using logistic regression models.; Results: 78 family members participated; 25.5% exhibited depressive symptoms, 19.4% had symptoms of anxiety. Eleven stroke survivors (16.7%) had evidence of cognitive decline according to both the IQCODE and MoCA. Family members of stroke survivors with cognitive decline were significantly more likely to report symptoms of depression [age-adjusted OR (95% CI): 5.94 (1.14, 30.89)] or anxiety [age-adjusted OR (95% CI): 5.64 (1.24, 25.54)] than family members of stroke survivors without cognitive decline.; Conclusions: One-fifth of family caregivers exhibited symptoms of anxiety and one-quarter symptoms of depression at 5 years post-stroke. Stroke survivor cognitive decline was significantly associated with both depressive and anxious symptoms of family caregivers. Family members play a key role in the care and rehabilitation of stroke patients; enhancing their psychological wellbeing and identifying unmet needs are essential to improving outcomes for stroke survivors and families.

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An Examination of a Simplified Stroke Rehabilitation Program for Reducing Family Caregiver's Burden for Stroke Patients in Rural China

With stroke being one of the leading causes of disability worldwide, families and social systems may face strain as they adjust to a caregiving role. This strain may be amplified in family systems living in rural areas due to limited access to resources. Thus, it is important for helping professionals such as couple, marriage, and family therapists to understand what facets of this disability are linked with caregiver strain as well as to explore and understand various interventions that may ease caregiver burden. Using existing data from 177 pairs of stroke patients and their family caregivers in rural Mainland China, the present study utilized a moderation analysis to examine (1) the association between stroke patient physical functioning, patient mental health, and their family caregiver burden and (2) how a developed patient rehabilitation intervention program for caregivers moderated the association between patient physical functioning as well as mental health and caregiver burden 6-month post intervention. Results suggested that better patient physical functioning were related to lower levels of caregiver burden (b = − 1.418, p <.001, β = − 0.33). However, the developed rehabilitation intervention program did not significantly moderate the association between stroke patient physical functioning as well as mental health and caregiver burden. These findings provide insight into correlates of stroke patients' caregiver burden in rural China. Development of more effective rehabilitation programs and interventions for stroke patients and their family caregivers as well how couple, marriage, and family therapists may be uniquely qualified to contribute to such interventions is discussed.

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Organising Support for Carers of Stroke Survivors (OSCARSS): study protocol for a cluster randomised controlled trial, including health economic analysis

Background: Stroke often results in chronic disability, with partners and family members taking on the role of informal caregiver. There is considerable uncertainty regarding how best to identify and address carers' needs. The Carer Support Needs Assessment Tool (CSNAT) is a carer-led approach to individualised assessment and support for caregiving that may be beneficial in palliative care contexts. CSNAT includes an implementation toolkit. Through collaboration, including with service users, we adapted CSNAT for stroke and for use in a UK stroke specialist organisation providing long-term support. The main aims of OSCARSS are to investigate the clinical and cost-effectiveness of CSNAT-Stroke relative to current practice. This paper focuses on the trial protocol, with the embedded process evaluation reported separately. Methods: Longitudinal, multi-site, pragmatic, cluster randomised controlled trial with a health economic analysis. Clusters are UK services randomised to CSNAT-Stroke intervention or usual care, stratified by size of service. Eligible carer participants are: adults aged > 18 years; able to communicate in English; referred to participating clusters; and seen face-to-face at least once by the provider, for support. The 'date seen' for initial support denotes the start of intervention (or control) and carers are referred to the research team after this for study recruitment. Primary outcome is caregiver strain (FACQ - Strain) at three months after 'date seen'. Secondary outcomes include: caregiver distress; positive caregiving appraisals (both FACQ subscales); Pound Carer Satisfaction with Services; mood (HADs); and health (EQ-5D5L) at three months. All outcomes are followed up at six months. Health economic analyses will use additional data on caregiver health service utilisation and informal care provision.Discussion: OSCARSS is open to recruitment at the time of article submission. Study findings will allow us to evaluate the clinical and cost-effectiveness of the CSNAT-Stroke intervention, directed at improving outcomes for informal carers of stroke survivors. Trial findings will be interpreted in the context of our embedded process evaluation including qualitative interviews with those who received and provided services as well as data on treatment fidelity. OSCARSS will contribute to knowledge of the unmet needs of informal stroke caregivers and inform future stroke service development.Trial Registration: ISRCTN Registry, ISRCTN58414120 . Registered on 26 July 2016.

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Informal caregivers' well-being and care recipients' quality of life and community reintegration - findings from a stroke survivor sample

Background: Stroke is highly debilitating and requires long-term care. Informal caregivers of stroke survivors play important roles in stroke rehabilitation. Caring for stroke survivors can negatively affect the caregivers' well-being and may adversely impact on their caregiving quality and subsequently on stroke survivors' well-being. There seems to be a dearth of research on the relationships between caregivers' and stroke survivors' well-being.; Aims and Objectives: This study was designed to determine the relationships among informal caregivers' burden and quality of life (QOL) and stroke survivors' QOL and community reintegration.; Methods: This ethically certified cross-sectional survey involved 82 stroke survivors (mean age = 60.48 ± 11.13 years) and their 82 primary caregivers (mean age = 36.13 ± 13.69 years) consecutively recruited from seven conveniently sampled tertiary hospitals in Nigeria. Caregivers Strain Index, Igbo-culture adapted Maleka Stroke Community Reintegration Measure and Short-Form 36-item Health Survey questionnaires were used to assess the caregivers' burden, survivors' community reintegration and QOL (of survivors and caregivers), respectively. Data were analysed using descriptive statistics, Spearman rank, Mann-Whitney U and Kruskal-Wallis tests at alpha level of 0.05.; Results: The mean stroke survivors' community reintegration and QOL were 34.05 ± 21.54% and 34.93 ± 16 ± 49%, respectively. The mean caregivers' QOL and burden scores were 74.49 ± 12.61% and 9.13 ± 3.18, respectively. About 80.5% of the caregivers experienced significant burden. Stroke survivors' QOL and community reintegration, and caregivers' QOL and burden significantly correlated with one another (p < 0.05). Poststroke duration, survivor-caregiver cohabitation duration, survivors' community-dwelling duration and daily care-giving hours significantly correlated with each of stroke survivors' community reintegration and QOL, and caregivers' burden and QOL (p < 0.05).; Conclusions: Stroke survivors' community reintegration and QOL were poor while caregivers' had moderate QOL and high prevalence of significant burden. Significant correlations exist between caregivers' well-being and stroke survivors' QOL and community reintegration. Interventions targeted at reducing caregivers' burden may help improve both caregivers and survivors' well-being.

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Living on the edge: Family caregivers' experiences of caring for post-stroke family members in China: A qualitative study

Background: Globally, one-third of the 15 million people with stroke suffer permanent physical, cognitive, and emotional impairment. Because of traditional Chinese culture and the limited development of the primary healthcare system, most stroke survivors are cared for and live with their family after hospital discharge. However, previous literature shows a lack of qualitative studies on family caregivers' experience of caring for their relatives in China.; Objectives: The aim of this study was to explore the experience of family caregivers taking care of stroke survivors in China.; Methods: An explorative design was used wherein qualitative semi-structured interviews were conducted with family caregivers in China. Family caregivers were selected from one city and three communities using a purposive sampling method until no new data were generated (n = 26). A thematic analysis was used for the data analysis in this study.; Findings: Family caregivers' experience was described as living on the edge, which pulled their lives in multiple directions, created an unstable situation, and reduced their well-being and health. The participants believed they had total responsibility and felt that this was expected from both themselves and society. Little external understanding and insufficient support was emphasised, resulting in the caregivers feeling all alone, drained by caring, and like prisoners in their own lives. The family caregivers had to face all of the family events and make all of the decisions by themselves. They expressed love for their family members with stroke, but this was often overshadowed by feelings of sadness, depression, sensitivity, and anger. This resulted in an inability to see how things could improve and in the family caregivers being uncertain about the future.; Conclusion: All of these findings increased understanding and added knowledge of this topic that has been seldom studied in China. Healthcare authorities and professionals should recognise and understand the lives and situations of family caregivers since their relatives had a stroke to further identify their difficulties and needs. Appropriate and effective support, both from government and society, should be planned and implemented for family caregivers to relieve them from caring for their relatives with stroke and maintaining the quality of their own lives.

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The effect of patient care education on burden of care and the quality of life of caregivers of stroke 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.

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Emotional and social repercussions of stroke on patient-family caregiver dyads: Analysis of diverging attitudes and profiles of the differing dyads

For patients, the social and emotional repercussions of stroke include shame, personality changes, and upheavals experienced by the couple (i.e. patient and main family caregiver). These impacts on the couple ‘patient/family caregiver’ are scarcely documented. Focusing on the perceptions of the patients and the family caregivers living at home, two years after a stroke occurrence, the aims of the study were to analyse the concordance of attitudes towards the emotional and social repercussions of stroke and to determine the profiles of the differing dyads. Two researchers conducted separate face-to-face structured interviews with stroke survivors and their family caregivers. Eleven items, identified through a content analysis of interviews and after a qualitative process of generating questionnaire items, assessed the commonly experienced impact of stroke on the family, the social repercussions of stroke, and its emotional effects on the stroke survivors. The kappa concordance coefficient was used to determine the response convergence between patients and family caregivers. Four items, selected by a panel of experts, were included in logistic regressions (i.e., demographic characteristics and patients’ impaired functions) to identify the differing dyadic profiles. Family caregivers’ and patients’ attitudes towards the social repercussions of stroke were similar. Patients with motor deficiencies tended to underestimate the upheaval brought to their couple by stroke, whereas caregivers of language-impaired patients tended to underestimate their feelings of shame and demeaning. Communication disturbances, but also residual physical disabilities in stroke survivors, may affect the understanding of each other’s attitudes within dyads. In order to avoid dysfunctional relationships between family caregivers and patients, healthcare professionals need to pay special attention to this issue, especially in cases of aphasia and motor deficiencies.

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Male Caregivers Report Problems in Caring at Home After Spouses Survive Stroke

Stroke is sudden and often traumatic with results that affect both the patient and family members who provide care. Approximately 40% of individuals caring for family members/friends are male. Transitioning from the noncaregiver role to caregiver can be unsettling. Guided by Friedemann's framework of systemic organization, this secondary data analysis examined problems reported by men caring for spouses in the first year after stroke. Using a mixed methods design, 73 caregivers (CGs) participated in bimonthly telephone interviews for 1 year. For this analysis, only the males caring for spouses (n = 12 married and n = 1 unmarried partner) were examined. These data were analyzed using Colaizzi's rigorous method of content analysis. Five problem themes emerged: 1) adjusting to multitasking in everyday living (Friedemann's system maintenance and individuation), 2) recognizing physical and mental disabilities (coherence), 3) dealing with outside forces and limited resources (individuation), 4) struggling to return to normal (system maintenance), and 5) feeling physically, mentally, and emotionally exhausted (system maintenance). These problem themes demonstrated incongruence as the men sought to maintain their prior lives. Theory-based themes of male stroke CGs' problems were uncovered that can be used to target interventions to help them achieve balance between incongruence and congruence in their lives.

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Family-led rehabilitation in India (ATTEND)—Findings from the process evaluation of a randomized controlled trial

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.

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Caring for stroke survivors: experiences of family caregivers in Sri Lanka - a qualitative study

Background: Stroke is a life-changing event for both stroke survivors and their family caregivers. After receiving acute care at the hospital, family members are expected to take care of stroke survivors at home and to continue treatment and rehabilitation. The new role of "informal caregiver" is a challenge that creates many difficulties for family caregivers that are not explicit in the Sri Lankan context.; Objectives: This study aimed at exploring family caregivers' experiences of providing informal care for dependent stroke survivors.; Methods: The sample was chosen by purposive sampling with a maximum variation by age, ethnicity, religion, educational level, relationship, and monthly income. Ten informal family caregivers to stroke survivors with hemiplegia who had been treated at the National Hospital of Sri Lanka participated in in-depth interviews analyzed using conventional content analysis.; Results: Qualitative content analysis of data resulted in an overriding theme, "Caring with love, against all odds," along with four categories, "Life alterations," "Lack of resources," "Compassionate care," and "Coping strategies." Although the increased workload, restricted social life, physical problems, and knowledge and financial deficits were challenging for the family caregivers, self-strength and supportive social networks helped them to compassionately care for their stroke survivor.; Conclusions: The phenomenon of family caregivers providing informal care for stroke survivors was explicated as compassionate care, notwithstanding numerous difficulties. The findings motivate further research and strategies to minimize family caregivers' burden and facilitate the positive aspects of caregiving to promote the health and well-being of both stroke survivors and their families.

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Experiences of patients with stroke and their caregivers with caregiver-mediated exercises during the CARE4STROKE trial

Purpose: Caregiver-mediated exercises are a novel way of delivering augmented exercise therapy for patients with stroke, in which patients do additional therapeutic exercises together with a caregiver. This explorative qualitative study is part of the CARE4STROKE trial and focused on how participants manage these exercises together. The research questions were: (1) how do the patient-caregiver couples exercise together? and (2) what does exercising together bring about, besides more hours of practice?; Methods: Semi-structured interviews were conducted with patients and caregivers who participated in the CARE4STROKE intervention. Inductive thematic data analysis was applied.; Results: Seven patients and seven caregivers were interviewed. Three different role-dynamics were found during caregiver-mediated exercises: (1) patient in control, (2) in concert, and (3) the caregiver as informal carer. In addition, three themes were identified about what exercising together brings about: (a) tailor-made exercises through active involvement, (b) preparation for the home situation, and (c) opportunity to be involved.; Conclusion: Different role-dynamics are at play in caregiver-mediated exercises, and it is important for participating staff to be aware of their possible effects on the strain of patient or caregiver. Caregiver-mediated exercises were found to enhance individualization of the treatment plan and preparation for home discharge. Implications for rehabilitation Caregiver-mediated exercises, in which a caregiver does exercises with a patient, are currently under investigation as a new form of augmented exercise delivery after stroke Doing exercises together seems to make patient and caregivers actively involved in rehabilitation, which they appreciate, and which seems to help them prepare for the home situation Caregiver selection and monitoring role-dynamics during exercising is an important task of the rehabilitation team.

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‘Call me if you need’: Social support experiences under economic and social change

Social interactions play an important role in people’s life and people’s health but their scope and intensity tend to decrease with age, challenging social support dynamics and increasing the risk of social isolation and helplessness. In Portugal, policymakers still seem to rely on traditional social relations in eldercare, while contextual changes and trends are redefining family roles and behaviors and defying the established social support structure. In this work, we aim to examine the scope, structure and experiences of the informal social support network available in the country for stroke patients 6 months after their discharge from the acute care unit in the context of a larger study. The results seem to confirm the importance of family as a source of social support and shed light on different bonding experiences with non-kin social groups, such as neighbors and friends. A coordinated care provision, combining formal and informal support is vital and beneficial for patients, their caregivers and the care system.

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Investigation into the needs of informal caregivers of stroke survivors in Antananarivo, Madagascar

Background: Stroke is the second leading cause of disability in Madagascar, half of those affected are <50. All treatment must be paid for; however, 92% live on <2€/day, so informal caregivers are very important. Method: In 2017, 15 caregivers of stroke survivors were interviewed by a medical student, in the rehabilitation department of the university hospital in Antananarivo, Madagascar. A semi-structured interview guide was devised exploring their understanding of stroke, assistance in activities of daily living (ADL) (using visual cues), and care burden (based on caregiver burden tools). Audio recordings and notes were analysed using thematic analysis. Results/Findings: Caregivers often lacked understanding on preventing stroke recurrence and the extent of possible recovery. Care burden was considerable, including impact on own well-being and finances, and caregivers felt that they had little access to specialized equipment or help. Participants were desperate for information regarding stroke care and recovery; this may have influenced how they approached the interviewer, as a potential information source, and therefore not been as critical of the health service. Discussion: These findings are similar to other literature on stroke survivors and caregivers in high- and middle-income countries; no literature was found in low-income countries. Limitations to this study include that a high-income group were interviewed and a translator was used. There are no occupational therapists in Madagascar, which limits the exploration of their potential benefit. Conclusion: This study is the first to explore the needs of caregivers of stroke survivors in Madagascar, the findings of which can help to inform future work in low-income countries on stroke carers. 

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An Evaluation of the Family Informal Caregiver Stroke Self-Management Program

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.

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Preventing Chronic Emotional Distress in Stroke Survivors and Their Informal Caregivers

Background/objective: Chronic emotional distress (e.g., depression, anxiety, post-traumatic stress) is common after stroke and interdependent between patients and their informal caregivers. We measured stroke survivors', caregivers', and neurocritical care nurses' views of primary drivers of distress during the stroke experience, and needs and preferences for the structure, topics, mode of delivery, and timing of an intervention to promote emotional recovery.; Methods: We conducted semi-structured interviews with 24 patient-caregiver dyads within the Neuroscience Intensive Care Unit (Neuro-ICU). Additionally, we conducted two focus groups with 15 nurses. Interviews and focus groups were audio-recorded, transcribed, and coded using NVivo 11 (QSR International) software.; Results and Conclusions: The challenges and impacts of stroke most commonly reported by dyads were: uncertainty about future health, fear of recurrent strokes, negative emotions, and role changes post-stroke. Dyads and nurses agreed that resiliency skills such as mindfulness/focusing on the present, problem solving, gratitude/optimism, self-care, interpersonal communication and developing a supportive team of family, friends, and medical staff are beneficial to optimize recovery. The potential barrier to intervention delivery was accessibility, due to challenges of time and travel to appointments. Participants agreed that starting the intervention at hospitalization and continuing via live video after discharge is an ideal delivery modality. Stroke survivors, caregivers, and Neuro-ICU nurses believe that a resiliency skills-based intervention to prevent chronic emotional distress is necessary and urgent. This qualitative study provides valuable information on the challenges faced by dyads, intervention topics to prioritize, and strategies to maximize feasibility, acceptability, and effect.

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Association between incongruence about survivor function and outcomes among stroke survivors and family caregivers

Background: Stroke survivors and family caregivers often have incongruent appraisals of survivor cognitive, physical, and psychosocial function. Partner incongruence contributes to poor outcomes for survivors and caregivers. Objectives: This study explored whether partner incongruence: (1) differs by function domain; (2) increases or decreases over time, and; (3) is associated with self-rated health, distress, stress, and depressive symptoms. Methods: Structured surveys were administered to 32 survivors and caregivers at approximately 3 (enrollment) and 7 months (follow-up) post-stroke. Paired t-tests were used to examine partners' ratings of survivor function at enrollment and follow-up, and changes in incongruence over time. Partial correlations were used to examine the association between incongruence at enrollment and outcomes at follow-up. Results: Survivors consistently rated their own memory and thinking as significantly better than caregivers rated their memory and thinking. At follow-up, survivors rated their own communication as significantly better than caregivers rated their communication. Incongruence about survivor memory and thinking was associated with survivor distress, as well as caregiver distress, stress, and depressive symptoms. Incongruence about survivor ADLs was associated with caregiver stress and depressive symptoms. Incongruence about survivor social participation was associated with caregiver distress. Conclusions: Findings from this study suggest that survivors and caregivers often have incongruent appraisals of survivor function, that incongruence does not improve naturally over time, and that incongruence may be detrimental for survivor and caregiver outcomes. Further research should be directed at the mitigation of incongruence and strategies to improve outcomes for both survivors and family caregivers.

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The development of a positive behaviour support programme for families following acquired brain injury

Background/Aims: Families require more specialised support to manage behaviours of concern following acquired brain injury within community settings. Evidence supports the involvement of family caregivers in behaviour interventions, however there are no validated behaviour support approaches for individuals with acquired brain injury emphasising family involvement. This research aims to (1) gain insight from rehabilitation professionals and family caregivers on best practice in behaviour support following acquired brain injury in community settings, and (2) obtain feedback on the proposed Family-directed Positive Behaviour Support Programme, which aims to enhance the capability of family caregivers in supporting behavioural changes in an individual following acquired brain injury. Methods: Rehabilitation professionals (n=8) and family caregivers (n=3) completed a three-round Delphi study with the aim of reaching consensus (75% agreement) regarding research objectives. Findings: All items presented regarding best practice in supporting family caregivers with behaviour support reached consensus. Results were used to refine the content and format of delivery of the Family-directed Positive Behaviour Support programme. Conclusions: Findings suggest an agreement regarding what support is needed, yet this is still not being provided. The Delphi process has made significant contribution to the Family-directed Positive Behaviour Support programme, which aims to inform a family-directed approach to behaviour support following acquired brain injury in community settings. 

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Validation of the caregiving knowledge questionnaire-my: Measuring knowledge regarding positioning and feeding among Malaysian informal caregivers of stroke patients

Aim: The majority of caregivers for stroke patients in Malaysia are informal caregivers, although there are no valid tools to measure their knowledge regarding caregiving. Therefore, this study validated the Caregiving Knowledge Questionnaire (CKQ-My) as an assessment of Malaysian stroke caregivers' knowledge regarding patient positioning and feeding. Methods: Back-to-back translation was used to produce a bilingual version of the questionnaire. Hand drawings were used to replace photographs from the original questionnaire. Face validity and content validity were assessed, and construct validity was determined by comparing responses from informal caregivers, medical students, and primary care doctors. Finally, the internal consistencies of the subscales were determined. Results: Pretesting showed that the translated version was sufficiently easy to understand. Internal consistency for the positioning subscale (28 items, Cronbach's α = 0.70) and feeding subscale (15 items, Cronbach's α = 0.70) was good. Mean scores for the positioning subscale for caregivers (mean: 17.1 ± 3.9), medical students (mean: 18.9 ± 3.1), and doctors (mean 21.5 ± 2.2) were significantly different (F = 5.28, P ' = 0.011). Mean scores for the feeding subscale for caregivers (mean 13.1 ± 2.5), medical students (mean 16.1 ± 1.9), and doctors (mean 16.1 ± 2.4) also differed significantly (F = 6.217, P = 0.006). Conclusions: CKQ-My has good internal consistency and construct validity for the subscales measuring stroke caregivers' knowledge about positioning and feeding of stroke patients. It has potential as an assessment of effectiveness of caregiver training and for future studies on long-term stroke outcomes in Malaysia.

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A Community Based Program for Family Caregivers for Post Stroke Survivors in Thailand

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.

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The Relationship Between Mutuality and Health-Related Quality of Life in Adult Child Caregivers in China

The strain inherent in caregiving relationships between adult children and aging parents is a prominent issue in contemporary China due to a combination of demographic and socioeconomic changes. The purpose of this study was to explore how mutuality, a positive quality of caregiving relationships, contributes to the physical health and mental health (health-related quality of life [HRQoL]) of adult child caregivers [ACCs] of parent stroke survivors. A cross-sectional correlational study was conducted on a nonproportional quota sample of 126 ACCs, using questionnaires of demographics, the 15-item Mutuality Scale, and the Second Version of the Standard 12-Item Health Survey (SF-12v2). Higher mutuality was found to be correlated with better caregiver physical health and mental health. However, after adjusting for the covariates, mutuality significantly explained 4.6% of the variance of caregiver physical health (β = .22, ΔR 2 = .046, p < .01) but it did not significantly explain the variance of caregiver mental health. Although multiple factors correlate with Chinese family caregivers' HRQoL, this was the first study exploring the impact of caregiver-care receiver dyadic relationships on caregiver HRQoL in mainland China by using a mutuality scale with SF-12v2. Despite the fact that the Chinese tradition of filial piety can facilitate mutuality, socioeconomic changes and legislation that require adult children to care for aging parents appear to create high stress among family caregivers. Higher levels of mutuality contribute to better physical health in Chinese family caregivers. Therefore, culturally appropriate family nursing strategies and social policies in China could enhance caregiver mutuality and potentially promote their HRQoL, in particular physical health.

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Examining associations of functional deficits and mood states with empathic responses of stroke family caregivers

Background: Stroke is one of the most prevalent chronic illnesses worldwide. Family caregivers can make a significant contribution toward patients' recovery. However, the patient's functional deficits and the caregiver's mood states can impact the caregiver's motivation to engage in empathic responses toward patients. Clinicians need help in recognizing patients at risk for not receiving empathic responses from family caregivers who are pivotal in long-term help and emotional support. Objective: The aim of this study was to examine possible associations of family caregiver perceptions of functional deficits of patients who are poststroke and caregiver mood states with their empathic responses toward patients who are poststroke. Methodology: As guided by Davis' organizational model on empathy, we conducted a correlational descriptive study of associations among patient functional deficits, caregiver mood states, and caregiver empathic responses toward patients who are poststroke. Participants were requested to complete four questionnaires. Results: Caregiver fatigue was the only mood state significantly associated with their empathic responses toward patients who are poststroke. Conclusions: The results of the current study contribute to the current state of the literature on poststroke care at home by highlighting the impact of caregiver mood states, particularly caregiver fatigue, on their empathic responses toward patients who are poststroke. Recommendations for clinical practice and future studies were made based on this study's results. 

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The Impact of Caring for Persons with Stroke on the Leisure Occupations of Female Caregivers

Aim: The purpose of this phenomenological study is to contribute to the literature surrounding caregivers of persons with stroke and to understand the caregivers' perspective on leisure participation and quality of life. Methods: Caregivers (n = 4) of clients with stroke were recruited for the study via convenience sampling. Participants were audio-recorded during a semi-structured interview lasting 60–80 minutes. The interview guide included open-ended questions about the participant's leisure participation and quality of life. Recorded data was transcribed and in-vivo coding was completed. Results: Eight categories were developed from the identified codes and narrowed into primary themes: role shift, loss of control, and occupational deprivation, consistent with Moustakas (1994) as adapted by Creswell (2013). Conclusions: Understanding the essence of the lived experience of caregivers is important to the occupational therapy profession because of the prevalence of caregiver burden and the impact such role-transition has on their occupational participation and that of the client.

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Reconciling Marriage and Care after Stroke

Most research on stroke's impact on couples has focused on the transition to caregiving/receiving. Despite considerable evidence that marriage is the primary source of support in the face of chronic conditions, little is known about what happens to marriage in the context of care after stroke. To address this gap, we undertook a qualitative grounded-theory study of 18 couples in which one partner had experienced a stroke. Findings revealed two interrelated themes of the couple processes: working out care, which involved discovering and addressing disruptions in day-to-day activities; and rethinking marriage, which involved determining the meaning of their relationship within the new context of care and disability. Three distinct types of marriages evolved from these processes: reconfirmed around their pre-stroke marriage; recalibrated around care; and a parallel relationship, "his" and "her" marriage. Our findings highlight the need to consider relationship dynamics in addition to knowledge about stroke and care.

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Disciplinary power and the process of training informal carers on stroke units

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.

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Quality of life, anxiety, depression and burden among stroke caregivers: A longitudinal, observational multicentre study

Aim To longitudinally describe stroke caregivers’ quality of life, anxiety, depression and burden and to identify predictors of stroke caregivers’ quality of life, anxiety, depression and burden. Background Caregivers have a key role in stroke survivor care and the first year of caregiving is the most challenging. To give tailored interventions, it is important to capture changes and identify predictors of caregiver quality of life, anxiety, depression and burden during the first year. Design A 12‐month longitudinal study. Data were collected between June 2013–May 2016. Methods Changes in stroke caregiver quality of life, anxiety and depression and burden and their predictors were identified using linear mixed‐effects models. Results The caregivers (N = 244) were 53 years old and mostly female. Caregiver quality of life did not change significantly over the 12 months, anxiety and depression decreased up to 9 months and caregiver burden decreased from baseline to 3 months, then increased up to 9 months. Higher caregiver quality of life was predicted by caregiver younger age, higher education, living with a stroke survivor, survivor older age and higher physical functioning; higher anxiety and depression were predicted by older caregiver age and younger survivor age; higher burden was predicted by caregiver male gender, the caregiver not living with survivor and survivor lower physical functioning. Conclusion The first 9 months of caregiving are particularly problematic for caregivers. The trajectories of the above variables and their predictors may be useful for policy makers, clinicians, investigators and educators to give better care to stroke caregivers and their survivors.

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Effects of modified 8-week reminiscence therapy on the older spouse caregivers of stroke survivors in Chinese communities: A randomized controlled trial

Objective: Our aim was to evaluate the effectiveness of a modified 8‐week reminiscence therapy on the burden, positive experience, and life satisfaction of older spouse caregivers and the life satisfaction of stroke survivors. Methods: We conducted a randomized controlled trial by using 75 older stroke couples recruited from communities in Zhengzhou, China. We randomly assigned participants to 1 of 3 groups: Group 1 (G1, 25 couples, all attend intervention) and Group 2 (G2, 22 couples, only caregivers attend intervention), who participated in a modified 8‐week reminiscence therapy, and a waiting list (control) group (G3, 28 couples). Interviewers blinded to treatment group assignment administered the life satisfaction to both stroke survivors and caregivers, caregiver burden, and positive experience for caregivers, at preintervention, immediately postintervention, and at 1 month and 3 months after cessation of the intervention. Results: We found a statistically significant interaction between treatment groups and assessment time points for the 4 outcome measures (P < .001). Although the effects were decreased after intervention at 1 month, the improvement in caregivers' positive experience, life satisfaction, burden, and life satisfaction of stroke survivors were still significant (P < .001). Conclusions: The use of a modified 8‐week reminiscence therapy in this study sample improved the life satisfaction of stroke survivors and their spouse caregivers, improved the positive experience of caregivers, and decreased the burden of caregivers.

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Trajectories of positive aspects of caregiving among family caregivers of stroke-survivors: the differential impact of stroke-survivor disability

Objective To delineate positive aspects of caregiving trajectories among family caregivers of stroke-survivors and determine the impact of stroke-survivor disability, a time-varying factor, on the delineated trajectories. Methods In a longitudinal study, family caregivers of 173 stroke-survivors in Singapore were administered the Positive Aspects of Caregiving scale (PAC scale) thrice (baseline/3 months/6 months). Group-based trajectory modeling delineated positive aspects of caregiving trajectories and identified the impact of stroke-survivor disability on the trajectories. Results Two distinct positive aspects of caregiving trajectories, Persistently Low and Persistently High were delineated. Increase in stroke-survivor disability was associated with a significant downward shift (reduction in positive aspects of caregiving) of the Persistently Low trajectory and a significant upward shift (increase in positive aspects of caregiving) of the Persistently High trajectory. Older caregivers were more likely to follow the Persistently High trajectory. Conclusions Care professionals should be mindful of the heterogeneity in the longitudinal pattern of positive feelings resulting from care provision among family caregivers of stroke-survivors, and the differential impact of stroke-survivor disability on the pattern of positive feelings. Younger caregivers as well as family caregivers who have low positive feelings at the start of their caregiver journey and experience worsening functional disability of their care recipient (stroke-survivor) require greater attention and support.

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The unmet needs of informal carers of stroke survivors: a protocol for a systematic review of quantitative and qualitative studies

Introduction Stroke events deeply affect not only the stroke survivor but also often the quality of life and physical and psychological health of the family and friends who care for them. There is a need for further information about the unmet needs of these informal carers in order to develop support services and interventions. The primary objective of this review is to report and synthesise the research describing the unmet needs of carers of stroke survivors. Methods and analysis A systematic review of quantitative and qualitative studies that report on the unmet needs of carers will be conducted. The following databases will be searched for relevant articles: MEDLINE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, EMBASE, Allied and Complementary Medicine Database and Scopus. No publication date constraints will be applied. Studies will be limited to those published in English and conducted among humans. Eligible studies will report on the unmet needs of informal carers of stroke survivors, defined as family members, friends and other unpaid caregivers. Studies which focus on formal, clinical or medical caregivers will be excluded. A narrative synthesis and pooled analysis of the main outcomes will be reported. Ethics and dissemination This review will be submitted to a peer-reviewed journal. Our findings are expected to provide new insights into the unmet needs of stroke survivors’ carers. Knowledge about the unmet needs of carers will inform the development and refinement of interventions and services to address these needs and better support carers of stroke survivors. The findings of this systematic review will be disseminated publicly and in peer-reviewed journals and may be the topic of research presentations. Trial registration number CRD42017067391.

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Effectiveness of a strength-oriented psychoeducation on caregiving competence, problem-solving abilities, psychosocial outcomes and physical health among family caregiver of stroke survivors: A randomised controlled trial

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.

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Meaning in stroke family caregiving: A literature review

Meaning plays an important role in stroke family caregiving. Understanding meaning facilitates the development of effective interventions that support stroke family caregivers. However, knowledge about this subject is fragmented and sparse. This review fills this knowledge gap by examining existing findings regarding meanings in stroke family caregiving. Specifically, a search of seven databases and a manual search produced a total of five articles for review. Embedded in the lived experience of caregivers, meanings in stroke family caregiving were interpreted as a physical, psychological, and social suffering: an obligation resulting from moral ethics, religion doctrines, others' expectations, and social norms and a subjective choice based on love, hope, and a sense of reciprocity. However, the detailed process of how and when caregivers identify meaning in caregiving needs further exploration. To gain a full picture of meaning in caregiving, more studies should be conducted among stroke family caregivers from different cultural, economic, and social backgrounds.

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Information, connection and giving back: peer support outcomes for families following acquired brain injury in South Australia

This study aimed to identify the experiences and outcomes of participation in Families4Families Inc., a peer support network for families following acquired brain injury (ABI) in South Australia. Prior to the programme's launch in January 2013, new members of the network were invited to participate in pre- and post-programme phone interviews to identify benefits and limitations of the programme, and identify outcomes of participation. Fifty-five members (20 people with ABI 35 caregivers) participated in pre-programme interviews, with 34 repeating the final interview at the end of the 18-month pilot programme in June 2014. Interview transcripts were imported into Nvivo 10, where comments were analysed using inductive data-driven thematic analysis. Responses to rating questions were analysed using SPSS 20. Attendance records indicate that 39 of 55 participants were involved in the programme (12 active, 27 occasional) and 16 participants did not attend. Active attenders reported that they provided and received higher levels of support and information than those who attended only occasionally, including the significantly higher development of new friendships and contacts (P < 0.001). Statistically significant improvements in knowledge of services by both active and occasional attenders were reported (P = 0.014 and 0.026 respectively) with non-significant improvements for non-attenders. Qualitative analysis of interview transcripts revealed three major thematic benefits of involvement. These include the opportunity to access information, receive emotional support and give back to others in the network. Reasons for no longer participating in the network are explored. Peer support programmes can enable families to share experiences, knowledge, positive coping strategies, understanding of systems and develop new social networks that last beyond the programme. The continuing need for extended regional access is highlighted, with follow-up and referral to counselling and other services also critical to ensure members are appropriately supported through difficult personal experiences.

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Long-term cost of spouses' informal support for dependent midlife stroke survivors

Objectives: Stroke is a major global disease that requires extensive care and support from society and relatives. The aim of this study was to identify and quantify the long‐term informal support and to estimate the annual cost of informal support provided by spouses to their stroke surviving partner. Method: Data were based on the 7‐year follow‐up of the Sahlgrenska Academy Study on Ischemic Stroke. One‐third of the spouses stated that they provided support to their stroke surviving partner. The magnitude of the support was assessed with a study‐specific time‐diary and was estimated for independent and dependent stroke survivors based on the scores of the modified Rankin Scale. To deal with skewed data, a two‐part econometric model was used to estimate the annual cost of informal support. Result: Cohabitant dyads of 221 stroke survivors aged <70 at stroke onset were included in the study. Spouses of independent stroke survivors (n = 188) provided on average 0.15 hr/day of practical support and 0.48 hr/day of being available. Corresponding figures for spouses of dependent stroke survivors (n = 33) were 5.00 regarding practical support and 9.51 regarding being available. The mean annual cost of informal support provided for independent stroke survivors was estimated at €991 and €25,127 for dependent stroke survivor. Conclusion: The opportunity cost of informal support provided to dependent midlife stroke survivors is of a major magnitude many years after stroke onset and should be considered in economic evaluations of health care.

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Stroke survivors' long-term QALY-weights in relation to their spouses' QALY-weights and informal support: a cross-sectional study

Background: Healthcare interventions that have positive effects on the stroke survivors’ health-related quality of life (HRQoL) and quality-adjusted life-years (QALYs) might also have positive effects for their spouses in terms of improved HRQoL and/or reduced spousal informal support. However, knowledge about stroke survivors’ HRQoL and QALY and the consequences for their spouses’ HRQoL and QALY is limited. Therefore, the aim of this study was to describe the HRQoL and QALY-weights in dyads of stroke survivors in comparison with dyads of healthy controls, and to study the relationship between the stroke survivors’ QALY-weights and consequences for spouses in terms of QALY-weight and annual cost of informal support, using a long-term perspective.

Methods: Data on stroke survivors, controls, and spouses were collected from the seven-year follow-up of the Sahlgrenska Academy Study on Ischemic Stroke (SAHLSIS). HRQoL was assessed by the SF-36, and the preference-based health state values were assessed with the SF-6D. The magnitude of the support was assessed with a study specific time-diary. An ordinary least squares (OLS) regression was used to estimate the association between stroke survivors’ and spouses’ QALY-weights. A two-part econometric model was used to estimate the association between stroke survivors’ QALY-weights and the time spent and cost of spouses’ informal support.

Results: Cohabitant dyads of 248 stroke survivors’ aged <70 at stroke onset and 245 controls were included in the study. Stroke survivors had lower HRQoL in the SF-36 domains physical functioning, physical role, general health, vitality (P < 0.001), and social functioning (P = 0.005) in comparison with their cohabitant spouses. There was no significant difference in HRQoL for the dyads of controls. The results from the regression analyses showed that lower QALY-weights of the stroke survivors were associated with lower QALY-weights of their spouses and increased annual cost of spousal informal support.

Conclusion: Our results show that the QALY-weights for stroke survivors had consequences for their spouses in terms of annual cost of spousal informal support and QALY-weights. Hence, economic evaluation of interventions that improve the HRQoL of the stroke survivors but ignore the consequences for their spouses may underestimate the value of the intervention.

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Female Caregivers and Stroke Severity Determines Caregiver Stress in Stroke Patients

Background: Stroke is among the major causes of short- and long-term disability. This study aimed to understand the caregivers (CGs) stress in stroke survivors. Materials and Methods: A 22-item questionnaire was administered to 201 CGs of stroke survivors. The variables tested were physical and mental health, social support, financial, and personal problems. CGs were divided into Group A (Barthel index [BI] <75) and B (BI >75) according to patient's BI, according to gender (male and female CG) and relation; spouses (wife, husband), daughters, sons, daughter-in-law, grandchildren, and rest (father, mother, brother, sister, and in-laws). Data were analyzed using SPSS software version–21. Data were analyzed to determine which variables of the patient effects the CG stress. Results: Majority of the CGs (74.62%) were females. 65% of CGs graded their burden as moderate to severe. 81% of CGs had left their work for caregiving. More than half of the CGs felt sleep disturbance and physical strain. Psychological instability and financial burdens were reported in 3/4th of CGs. Group A CGs faced more sleep, financial, health, and social life disturbance. Patient's bladder and bowel problems, shoulder pain, patients noncooperative attitude for medication administration, and physiotherapy were more upsetting for Group A CGs. Female CGs were subjected to more sleep disturbance, physical and psychological stress, faced more difficulty regarding the patient's bladder, bowel, personal hygiene needs, and physiotherapy. Female CGs felt less motivated in caregiving than male CGs. Wives and daughters-in-law experienced more burden. Time spent and burden perceived was more by female CGs (χ2 = 15.199, P = 0.002) than males (χ2 = 11.931, P = 0.018); wives and daughters than other relations (χ2 = 32.184, P = 0.000), (χ2 = 35.162, P = 0.019). Conclusion: Our study showed that caregiving burden was predominantly shouldered by females CGs. CGs faced physical, psychological, and socioeconomic burden. The burden was more evident in female CGs and in patients with severe stroke.

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Improving Stroke Caregiver Readiness for Transition From Inpatient Rehabilitation to Home

Purpose: As the population ages, older adults are more often living with functional limitations from chronic illnesses, such as stroke, and require assistance. Because stroke occurs suddenly, many stroke family caregivers in the United States are unprepared to assume caregiving responsibilities post-discharge. Research is limited on how family members become ready to assume the caregiving role. In this study, we developed a theoretical model for improving stroke caregiver readiness and identifying gaps in caregiver preparation. Design and Methods: We interviewed 40 stroke family caregivers caring for 33 stroke survivors during inpatient rehabilitation and within 6 months post-discharge for this grounded theory study. Data were analyzed using dimensional analysis and constant comparative techniques. Results: Caregivers identified critical areas where they felt unprepared to assume the caregiving role after discharge from inpatient rehabilitation. Steps to improve preparation include (a) conducting a risk assessment of the patient and caregiver; (b) identifying and prioritizing gaps between the patient’s needs and caregiver’s commitment and capacity; and (c) developing a plan for improving caregiver readiness. Implications: The model presented provides a family-centered approach for identifying needs and facilitating caregiver preparation. Given recent focus on improving care coordination, care transitions, and patient-centered care to help improve patient safety and reduce readmissions in this population, this research provides a new approach to enhance these outcomes among stroke survivors with family caregivers.

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Economic burden of informal care attributable to stroke among those aged 65 years or older in China

Stroke is a leading cause of disability in China, frequently resulting in the need for informal care. No information, however, is available on costs of informal care associated with stroke, required to understand the true cost of stroke in China. Using the 2011 China Health and Retirement Longitudinal Study, we identified 4447 respondents aged ≥65 years suitable for analyses, including 184 stroke survivors. We estimated the economic burden of informal care associated with stroke using a two-part model. The monthly number of hours of informal caregiving associated with stroke was 29.2 h/stroke survivor, and the average annual cost of informal care associated with stroke was 10,612 RMB per stroke survivor. The findings stress the necessity of proper interventions to prevent stroke and will be useful for estimating the economic burden of stroke.

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Psychological health of caregivers and association with functional status of stroke patients

Objective: Stroke does not only affect the physical state of patients but also the emotional state of their relatives, most effectively their caregivers. The study aims to examine the mood of caregivers experienced with care for patients with stroke who are highly dependent on the assistance and also to establish the relationship between the emotional state of caregivers and the severity of disability of the patients.

Methods: This study contained a total of 76 patients with sufficient cognitive functions and severe physical disabilities with hemiplegia caused by a cerebrovascular accident and their caregivers and 94 controls. The functional state of patients was assessed by the Barthel Index (BI). Furthermore, emotional state of the caregivers was assessed by the Hospital Anxiety and Depression Scale (HADS) and their life quality was assessed by the SF36 Health Survey.

Results: The mean anxiety (9.73 ± 4.88) and depression rates (9.81 ± 5.05) in the caregivers were significantly higher than those in controls (p<0.001, respectively). Significant impairments were observed in both their mental and physical health. Regression analysis also showed a significant negative correlation between the BI scores and the HADS scores.

Conclusion: Caregivers had an impaired emotional state and the level of their anxiety was associated with the severity of functional disability of the patients. Therefore, the support provided to the caregiver might be influential on the functional recovery of the patients.

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Changes in caregiver burden among informal caregivers of stroke patients in Mongolia

Background: Modern therapeutics and health care improvements prolong stroke patients’ survival however, the degree of disability remains high. Stroke survivors often require caregivers, particularly in the first year after the onset of the stroke. Longitudinal assessment of and factors associated with caregiver burden (CGB) among caregivers of stroke patients has been scarcely discussed. This study aimed to define the changes in CGB in the first year of caregiving among the caregivers of stroke patients and to identify associated factors. Methods: A prospective, multi-centered observational study was conducted in nine public hospitals in Mongolia. We used the Montgomery CGB Scale for assessing CGB, and repeated the assessment after 1 year. Stroke patient characteristics were included in the analyses. Multinomial logistic regressions were conducted to analyze changes in CGB. Results: A paired t-test analysis revealed that demand burden increased (from 12.61 to 11.50, p  = 0.034), whereas stress burden decreased (from 10.69 to 11.60, p  = 0.016). Although objective burden decreased, the difference was not significant. Factors associated with these changes in CGB were the caregiver’s marital status, the caregiver’s relationship with the patient, financial difficulties, and the patient’s sex and dependency.  Discussion: The information on factors predicting changes in CGB in the first year of caregiving provided in this study suggests that social or financial support can assist in reducing CGB among the caregivers of post-stroke patients.

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Independence and cognition post-stroke and its relationship to burden and quality of life of family caregivers

Background: Stroke is a chronic disease responsible for changes in the functional capacity of the patients. Patient care is usually provided by family caregivers, but with great burden and negative impact on their quality of life.

Objectives: (1) To investigate whether a correlation existed between the levels of independence and cognition in stroke patients and the burden and quality of life of their caregivers; (2) to assess whether periods of injury, rehabilitation and care, and age of the stroke patients interfered with these correlations.

Methods: This was a cross-sectional and correlational study that included 60 participants, of which 30 were post-stroke patients and 30 were their caregivers. The data collection instruments were the Mini Mental State Examination and the Functional Independence Measure for the post-stroke participants, and the Zarit Burden Interview Scale and the World Health Organization Quality of Life-BREF, for the caregivers. The Pearson’s product-moment correlation was used for the data analysis.

Results: Independence and cognition showed no correlation with the burden and quality of life of the caregivers. We identified a strong positive correlation between independence and cognition (r = 0.882), and a moderate negative correlation between independence and rehabilitation period (r = −0.398) and between burden and quality of life of the caregivers (r = −0.414). Conclusions: Our data suggest the need for health interventions aimed not only at stroke patients, but also at their family caregivers, given the association between the burden and the low levels of quality of life of the caregivers.

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"I Don't Believe in Leading a Life of My Own, I Lead His Life": A Qualitative Investigation of Difficulties Experienced by Informal Caregivers of Stroke Survivors Experiencing Depressive and Anxious Symptoms

Objectives: Health and social care services are increasingly reliant on informal caregivers to provide long-term support to stroke survivors. However, caregiving is associated with elevated levels of depression and anxiety in the caregiver that may also negatively impact stroke survivor recovery. This qualitative study aims to understand the specific difficulties experienced by caregivers experiencing elevated symptoms of anxiety and depression.; Methods: Nineteen semi-structured interviews were conducted with caregivers experiencing elevated levels of depression and anxiety, with a thematic analysis approach adopted for analysis.; Results: Analysis revealed three main themes: Difficulties adapting to the caring role; Uncertainty; and Lack of support.; Conclusions: Caregivers experienced significant difficulties adapting to changes and losses associated with becoming a caregiver, such as giving up roles and goals of importance and value. Such difficulties persisted into the long-term and were coupled with feelings of hopelessness and worry. Difficulties were further exacerbated by social isolation, lack of information and poor long-term health and social care support.; Clinical Implications: A greater understanding of difficulties experienced by depressed and anxious caregivers may inform the development of psychological support targeting difficulties unique to the caring role. Improving caregiver mental health may also result in health benefits for stroke survivors themselves.

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What is Important in E-health Interventions for Stroke Rehabilitation? A Survey Study among Patients, Informal Caregivers and Health Professionals

Incorporating user requirements in the design of e-rehabilitation interventions facilitates their implementation. However, insight into requirements for e-rehabilitation after stroke is lacking. This study investigated which user requirements for stroke e-rehabilitation are important to stroke patients, informal caregivers, and health professionals. The methodology consisted of a survey study amongst stroke patients, informal caregivers, and health professionals (physicians, physical therapists and occupational therapists). The survey consisted of statements about requirements regarding accessibility, usability and content of a comprehensive stroke e-health intervention (4-point Likert scale, 1=unimportant/4=important). The mean with standard deviation was the metric used to determine the importance of requirements. Patients (N=125), informal caregivers (N=43), and health professionals (N=105) completed the survey. The mean score of user requirements regarding accessibility, usability and content for stroke e-rehabilitation was 3.1 for patients, 3.4 for informal caregivers and 3.4 for health professionals. Data showed that a large number of user requirements are important and should be incorporated into the design of stroke e-rehabilitation to facilitate their implementation.

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The perspectives of spouses of stroke survivors on self-management - a focus group study

Purpose: This qualitative study explored how stroke survivors' spouses described their own self-management, their partner's self-management post-stroke and how they had been supported in developing self-management.; Method: Focus group interviews were conducted with 33 spouses of stroke survivors 34-79 years of age. A constant comparative framework was used for the analysis.; Result: Stroke also affected the spouses, gave changes in their relationships and challenged in being a caregiver beside being partner. They felt burdened, lonely, sad, and guilty. To manage themselves, many participants created time for themselves. For most spouses, self-management was connoted with co-management because they perceived their partners were not able to manage themselves completely post-stroke. They often felt lost after their partners came home and reported that they learned how to coach their partners post-stroke by trial and error, without much professional support. Moreover, many spouses experienced informal peer support as helpful.; Conclusion: Spouses of stroke survivors should be involved as soon as possible in stroke-rehabilitation and continue at home post-discharge. In addition to enhancing the spouses' skills in caregiving and supporting self-management, stroke survivors' spouses also need support in their own emotional and role management. Moreover, peers can play a role in rehabilitation post-stroke. Implications for Rehabilitation Spouses of stroke survivors should be considered as full participants of stroke-self-management programs to enhance their skills in caregiving and supporting self-management. Stroke survivors' spouses need support in their own emotional and role management. Peer support can play a role in rehabilitation post-stroke for stroke survivors as well as their spouses.

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Quality of Life Trajectories Among Stroke Survivors and the Related Changes in Caregiver Outcomes: A Growth Mixture Study

Objectives: To identify the distinct quality of life (QOL) trajectories among stroke survivors, and to evaluate the associations with their caregivers' burden, anxiety, and depression.; Design: This was a longitudinal dyadic study.; Settings: Stroke survivors and their informal caregivers were enrolled upon discharge from several rehabilitation hospitals, and they were followed during this multisite longitudinal study.; Participants: The stroke survivors (N=405, mean age=70.7y) included older adult men (52.0%), most of whom (80.9%) had had ischemic strokes. The caregivers (n=244, mean age=52.7y) included mostly women (65.2%), most of whom were the survivors' children (50.0%) or spouses (36.1%).; Interventions: Not applicable.; Main Outcome Measures: Latent growth mixture modeling was used to identify the distinct QOL trajectories among the stroke survivors over the course of 12 months of recovery. The longitudinal associations between the stroke survivor QOL trajectories and the caregivers' burden, anxiety, and depression were evaluated. A multinomial regression was then used to identify the predictors of the various survivor QOL trajectories.; Results: Three distinct survivor QOL trajectories were identified: high and slightly improving QOL, moderate and slightly worsening QOL, and markedly improving QOL. The caregivers' burden, anxiety, and depression mirrored the survivors' QOL trajectories. In the multinomial models, an older survivor age, hemorrhagic stroke, lower education, and coexisting chronic obstructive pulmonary disease or thyroid disease were significantly associated with a moderate and slightly worsening QOL trajectory. Women and blindness were associated with a markedly improving QOL survivor trajectory.; Conclusions: A survivor's QOL trajectory after a stroke was associated with their caregiver's burden, anxiety, and depression. Those survivors belonging to the moderate and slightly worsening QOL trajectory and their caregivers, in particular, need special care, because they are at risk for the worst outcomes.

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Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services - A systematic review and meta-ethnography

Objective: To describe and explain stroke survivors and informal caregivers' experiences of primary care and community healthcare services. To offer potential solutions for how negative experiences could be addressed by healthcare services.; Design: Systematic review and meta-ethnography.; Data Sources: Medline, CINAHL, Embase and PsycINFO databases (literature searched until May 2015, published studies ranged from 1996 to 2015).; Eligibility Criteria: Primary qualitative studies focused on adult community-dwelling stroke survivors' and/or informal caregivers' experiences of primary care and/or community healthcare services.; Data Synthesis: A set of common second order constructs (original authors' interpretations of participants' experiences) were identified across the studies and used to develop a novel integrative account of the data (third order constructs). Study quality was assessed using the Critical Appraisal Skills Programme checklist. Relevance was assessed using Dixon-Woods' criteria.; Results: 51 studies (including 168 stroke survivors and 328 caregivers) were synthesised. We developed three inter-dependent third order constructs: (1) marginalisation of stroke survivors and caregivers by healthcare services, (2) passivity versus proactivity in the relationship between health services and the patient/caregiver dyad, and (3) fluidity of stroke related needs for both patient and caregiver. Issues of continuity of care, limitations in access to services and inadequate information provision drove perceptions of marginalisation and passivity of services for both patients and caregivers. Fluidity was apparent through changing information needs and psychological adaptation to living with long-term consequences of stroke.; Limitations: Potential limitations of qualitative research such as limited generalisability and inability to provide firm answers are offset by the consistency of the findings across a range of countries and healthcare systems.; Conclusions: Stroke survivors and caregivers feel abandoned because they have become marginalised by services and they do not have the knowledge or skills to re-engage. This can be addressed by: (1) increasing stroke specific health literacy by targeted and timely information provision, and (2) improving continuity of care between specialist and generalist services.; Systematic Review Registration Number: PROSPERO 2015:CRD42015026602.

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Determinants of Informal Care, Burden, and Risk of Burnout in Caregivers of Stroke Survivors: The CONOCES Study

Background and Purpose: The aim of this article was to analyze the likelihood of receiving informal care after a stroke and to study the burden and risk of burnout of primary caregivers in Spain.; Methods: The CONOCES study is an epidemiological, observational, prospective, multicenter study of patients diagnosed with stroke and admitted to a Stroke Unit in the Spanish healthcare system. At 3 and 12 months post-event, we estimated the time spent caring for the patient and the burden borne by primary caregivers. Several multivariate models were applied to estimate the likelihood of receiving informal caregiving, the burden, and the likelihood of caregivers being at a high risk of burnout.; Results: Eighty percent of those still alive at 3 and 12 months poststroke were receiving informal care. More than 40% of those receiving care needed a secondary caregiver at 3 months poststroke. The likelihood of receiving informal care was associated with stroke severity and the individual's health-related quality of life. When informal care was provided, both the burden borne by caregivers and the likelihood of caregivers being at a high risk of burnout was associated with (1) caregiving hours; (2) the patient's health-related quality of life; (3) the severity of the stroke measured at discharge; (4) the patient having atrial fibrillation; and (5) the degree of dependence.; Conclusions: This study reveals the heavy burden borne by the caregivers of stroke survivors. Our analysis also identifies explanatory and predictive variables for the likelihood of receiving informal care, caregiver burden, and high risk of burnout.

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Outcomes, experiences and palliative care in major stroke: a multicentre, mixed-method, longitudinal study

Background: Case fatality after total anterior circulation stroke is high. Our objective was to describe the experiences and needs of patients and caregivers, and to explore whether, and how, palliative care should be integrated into stroke care.; Methods: From 3 stroke services in Scotland, we recruited a purposive sample of people with total anterior circulation stroke, and conducted serial, qualitative interviews with them and their informal and professional caregivers at 6 weeks, 6 months and 1 year. Interviews were transcribed for thematic and narrative analysis. The Palliative Care Outcome Scale, EuroQol-5D-5L and Caregiver Strain Index questionnaires were completed after interviews. We also conducted a data linkage study of all patients with anterior circulation stroke admitted to the 3 services over 6 months, which included case fatality, place of death and readmissions.; Results: Data linkage (n = 219) showed that 57% of patients with total anterior circulation stroke died within 6 months. The questionnaires recorded that the patients experienced immediate and persistent emotional distress and poor quality of life. We conducted 99 interviews with 34 patients and their informal and professional careers. We identified several major themes. Patients and caregivers faced death or a life not worth living. Those who survived felt grief for a former life. Professionals focused on physical rehabilitation rather than preparation for death or limited recovery. Future planning was challenging. "Palliative care" had connotations of treatment withdrawal and imminent death.; Interpretation: Major stroke brings likelihood of death but little preparation. Realistic planning with patients and informal caregivers should be offered, raising the possibility of death or survival with disability. Practising the principles of palliative care is needed, but the term "palliative care" should be avoided or reframed.

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Determining the feasibility and preliminary efficacy of a stroke instructional and educational DVD in a multinational context: a randomized controlled pilot study

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.

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Valued activities and informal caregiving in stroke: a scoping review

Purpose: Map the literature about valued activities and informal caregiving post stroke and determine the nature, extent, and consequences of caregivers' activity changes.; Methods: A scoping review was undertaken, searching Pubmed, Cinahl, PsycInfo, and Google Scholar. Two researchers independently identified relevant articles, extracted study characteristics and findings, and assigned codes describing the topics and outcomes. Using thematic analysis, the main study topics and study outcomes were described.; Results: The search yielded 662 studies, 30 of which were included. These were mainly qualitative and cross-sectional studies assessing caregivers' activity changes and related factors, or exploring caregivers' feelings, needs and strategies to deal with their activity challenges. Although caregivers often lost their social and leisure activities, which made them feel unhappy and socially isolated, we found no studies about professional interventions to help caregivers maintain their activities. Over the years, caregivers' activity levels generally increased. However, some caregivers suffered from sustained activity loss, which, in turn, relates to depression.; Conclusion: Loss of valued activities is common for stroke caregivers. Although high-level evidence is lacking, our results suggest that sustained activity loss can cause stroke caregivers to experience poor mental health and wellbeing. Suggestions to help caregivers maintain their valued activities are presented. Implications for rehabilitation Not only stroke survivors but also their informal caregivers tend to lose their valued activities, such as their social and leisure activities. Although many caregivers manage to resume their valued activities over time, others suffer from sustained activity loss up to at least two years post stroke. Loss of valued activities in stroke caregivers can result in lower levels of wellbeing, depression, and social isolation. Rehabilitation professionals should screen stroke caregivers for activity loss and assist them in resuming their valued activities and maintaining their social contacts.;

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Effectiveness of two home ergonomic programs in reducing pain and enhancing quality of life in informal caregivers of post-stroke patients: A pilot randomized controlled clinical trial

Background: Informal caregivers of post-stroke patients usually undergo high levels of pain and stress and have a reduced quality of life.; Objective: To evaluate the effectiveness of two home ergonomic interventions aimed at reducing pain intensity and perceived stress and enhancing the quality of life in informal caregivers of chronic post-stroke patients.; Methods: A randomized single-blind controlled clinical trial was conducted, with a sample of 33 informal caregivers of patients with stroke. Three groups were included: one received postural hygiene training and kinesiotherapy, for 12 weeks, two days a week, one hour per session; another received adaptation of the home environment, and the third was a control group. Pain intensity, stress level and general quality of life were evaluated at three-time points: pre-intervention, post-intervention, and after a follow-up period of three months.; Results: Neck pain decreased in the two experimental groups, and increased in the control group. Pain in the shoulders and knees was alleviated in the group that received postural hygiene and kinesiotherapy. In addition, regarding quality of life, this group obtained an improvement in the physical health dimension, while the home adaptation group reported improved social relationships.; Conclusions: These results suggest that 12 weeks of training in postural hygiene, combined with kinesiotherapy, and home adaptations can reduce pain and improve several aspects of the quality of life of this population. CLINICALTRIALS.; Gov Id: NCT03284580.; Copyright © 2018 Elsevier Inc. All rights reserved.

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Multimodal rehabilitation in the late phase after stroke enhances the life situation of informal caregivers

Purpose The burden of caregiving for stroke survivors is well known, but the effect of late stroke rehabilitation on the life situation of informal caregivers is unknown. Here, we assessed changes in the life situation of informal caregivers of stroke survivors enrolled in a multimodal intervention trial. Methods This controlled study was a questionnaire-based survey accompanying a three-armed randomized controlled trial of 123 stroke survivors. The care recipients of 106 caregivers who chose to participate were assigned to rhythm-and-music-based therapy (R-MT; n = 37), horse-riding therapy (H-RT; n = 37), or delayed intervention (control group, n = 32). Perceived changes in the life situation of the caregivers were evaluated with the Life Situation among Spouses after the Stroke Event (LISS) questionnaire before randomization, after the 12-week intervention, and 3 and 6 months later. Results After the intervention, the change in the median LISS score was significantly higher among intervention caregivers (1.5 [interquartile range (IQR) 8.8]) than controls (1.5 [IQR 8.8] vs. 0.0 [IQR 12.0], p = 0.036). The improvement was maintained at 3 months (1.5 [IQR 9.0] vs. 0.0 [IQR 10.5], p = 0.039) but not at 6 months (p = 0.284). Conclusion Engaging stroke survivors in multimodal interventions late after stroke appears to have potential to produce gains also in the general life situation of informal caregivers.

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Training informal caregivers to care for older people after stroke: A quasi-experimental study

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.

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Biopsychosocial Intervention for Stroke Carers (BISC): protocol for a feasibility randomised controlled trial (RCT)

Introduction: Reducing length of hospital stay for stroke survivors often creates a shift in the responsibility of care towards informal carers. Adjustment to the caregiving process is experienced by many carers as overwhelming, complex and demanding and can have a detrimental impact on mental and physical health and well-being. National policy guidelines recommend that carers' needs are considered and addressed; despite this, few interventions have been developed and empirically evaluated. We developed a biopsychosocial intervention in collaboration with carers of stroke survivors. Our aim is to determine whether the intervention can be delivered in a group setting and evaluated using a randomised controlled trial (RCT).; Methods and Analysis: Feasibility RCT and nested qualitative interview study. We aim to recruit up to 40 stroke carers within 1 year of the stroke onset. Carers are randomised to usual care or usual care plus biopsychosocial intervention. Each intervention group will consist of five stroke carers. The intervention will focus on: psychoeducation, psychological adjustment to stroke, strategies for reducing unwanted negative thoughts and emotions and problem-solving strategies. The main outcome is the feasibility of conducting an RCT. Carer outcomes at 6 months include: anxiety and depression, quality of life and carer strain. Data are also collected from stroke survivors at baseline and 6 months including: level of disability, anxiety and depression, and quality of life.; Ethics and Dissemination: Favourable ethical opinion was provided by East Midlands - Nottingham2 Research Ethics Committee (14/EMI/1264). This study will determine whether delivery of the biopsychosocial intervention is feasible and acceptable to stroke carers within a group format. It will also determine whether it is feasible to evaluate the effects of the biopsychosocial intervention in an RCT. We will disseminate our findings through peer-reviewed publications and presentations at national and international conferences.; Trial Registration Number: ISRCTN15643456; Pre-results.

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Caregiver-proxy reliability of the Igbo-culture adapted Maleka Stroke Community Reintegration Measure: a validation study

Objectives: This study was designed to determine the caregiver-proxy reliability of the Igbo-culture adapted urban version of the Maleka Stroke Community Reintegration Measure (I-MSCRIM).; Methods: This was a validation study involving 74 consenting stroke survivors and their 74 primary informal caregivers consecutively recruited from selected tertiary hospitals in South-East Nigeria (Igboland). The I-MSCRIM was researcher-administered to the participants. Obtained data was analyzed using frequency counts, percentages, range, mean, standard deviation, Spearman rank order correlation, Mann-Whitney U test, Kruskal-Wallis test and Intra-class Correlation Coefficient. Alpha level was set at 0.05.; Results: The mean ages of the stroke survivors (55.4% males) and their primary informal caregivers (41.9% males) were 50.14 ± 12.24 and 31.93 ± 10.9 years respectively. There was no significant difference in the community reintegration (CR) scores as rated by stroke survivors and their primary informal caregivers (p > 0.05). The correlations between stroke survivors' and primary informal caregivers' rated CR scores were all adequate and acceptable (ICC = 0.602-0.917). The discrepancy in the total CR scores between the two ratings was significantly influenced by primary informal caregivers' educational attainment (k = 13.15; p < 0.01).; Conclusion: The I-MSCRIM has acceptable caregiver-proxy reliability among Igbo stroke survivors in South-East Nigeria. This suggests that primary informal caregivers of stroke survivors can reliably estimate the CR of their care recipients when I-MSCRIM is administered to them. This will be useful when a stroke survivor cannot respond to I-MSCRIM.

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Balancing satisfaction and stress: carer burden among White and British Asian Indian carers of stroke survivors

Objectives: This paper presents the findings of a qualitative study exploring White and British Indian informal stroke carers' experiences of caring, factors contributing to their stress, and strategies used to overcome stress.; Design: A qualitative approach involving in-depth interviews was used to explore informal carers' experiences of caring for stroke survivors and the stress of caring at one and three to six months from the onset of stroke. Interviewers bilingual in English and Gujarati or Punjabi conducted interviews with carers. Socio-demographic data of carers and stroke survivors were collected at one, and three to six months by dedicated stroke research nurses.; Results: A total of 37 interviews with carers caring for stroke survivors with a wide range of physical and mental impairments were completed. A majority of carers had assumed the task of caring within a few weeks of the stroke. Irrespective of ethnicity, carers' emotional and physical well-being was undermined by the uncertainty and unpredictability of caring for stroke survivors, and meeting their expectations and needs. The strain of managing social obligations to care was common to all carers irrespective of gender and ethnicity, but the higher levels of anxiety and depression reported by Indian British female carers appeared to stem from the carers' pre-existing physical ailments, their cultural and religious beliefs, and household arrangements. Carers' strain in extended households was exacerbated by the additional responsibility of caring for other dependent relatives.; Conclusion: Since the role of carers is clearly indispensable in the successful rehabilitation of survivors, it is vital to ensure that their well-being is not undermined by a lack of information and training, and that their need for professional support is prioritised.

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Burden of informal caregivers of stroke survivors: Validation of the Zarit burden interview in an African population

Background: Informal care giving can be burdensome particularly where the option of institutionalized informal care scarcely exist.; Objective: To look at the burden of informal caregivers of stroke survivors using the Zarit burden interview (ZBI).; Method: 64 stroke survivors were assessed for demographics of age, gender, duration of follow-up since discharged from in-patient care, modified Rankin score at the time of discharge and at the time of evaluation for this study and the most important informal care giver at home was also assessed for whether care giving was telling on their health or life in any negative way. All the caregivers were subsequently assessed with the ZBI.; Results: Mean age of most important informal care givers was 40.67 ± 14.27 years and the sex distribution was 33(51.6%) female and 29(45.4%) males. 21(32.8%) reported that caregiving was a health burden. Mean ZBI scores were significantly higher (30.19 ± 14.81 vs 20.30 ± 12.96, P < 0.01) in those that reported that caregiving was telling on their health. ZBI overall rating of burden of caregiving was also significantly associated with whether caregiving was telling on the health of caregiver (P = 0.01) and also symmetrically agreed with whether the burden of caregiving was telling on health (k = 0.33, P< 0.01). The sensitivity and specificity of ZBI were 70% and 68.4% respectively on ROC statistics (AUC = 0.67, P = 0.017).; Conclusion: Reported burden of informal caregiving of about 33% is in our opinion huge. The moderate sensitivity and specificity of the ZBI means it could be safely used in the population studied.

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Assessing satisfaction with social care services among black and minority ethnic and white British carers of stroke survivors in England

Overall satisfaction levels with social care are usually high but lower levels have been reported among black and minority ethnic (BME) service users in England. Reasons for this are poorly understood. This qualitative study therefore explored satisfaction with services among informal carer participants from five different ethnic groups. Fifty-seven carers (black Caribbean, black African, Asian Indian, Asian Pakistani and white British) were recruited from voluntary sector organisations and a local hospital in England, and took part in semi-structured interviews using cognitive interviewing and the critical incident technique. Interviews took place from summer 2013 to spring 2014. Thematic analysis of the interviews showed that participants often struggled to identify specific 'incidents', especially satisfactory ones. When describing satisfactory services, participants talked mostly about specific individuals and relationships. Unsatisfactory experiences centred on services overall. When rating services using cognitive interviewing, explicit comparisons with expectations or experiences with other services were common. Highest satisfaction ratings tended to be justified by positive personal characteristics among practitioners, trust and relationships. Lower level ratings were mostly explained by inconsistency in services, insufficient or poor care. Lowest level ratings were rare. Overall, few differences between ethnic groups were identified, although white British participants rated services higher overall giving more top ratings. White British participants also frequently took a more overall view of services, highlighting some concerns but still giving top ratings, while South Asian carers in particular focused on negative aspects of services. Together these methods provide insight into what participants mean by satisfactory and unsatisfactory services. Cognitive interviewing was more challenging for some BME participants, possibly a reflection of the meaningfulness of the concept of service satisfaction to them. Future research should include comparisons between BME and white participants' understanding of the most positive parts of satisfaction scales and should focus on dissatisfied participants.

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Musculoskeletal Symptoms among Family Caregivers of Community-Dwelling Stroke Survivors in Nigeria

Introduction: Caring for stroke survivors may be burdensome with adverse consequences on caregivers' physical health. This study examined the prevalence of musculoskeletal symptoms and associated factors among family caregivers of stroke survivors in Nigeria. Methods: A hospital-based cross-sectional study involving 90 stroke caregiver and stroke survivor dyads was conducted. Data on the participants' demographics and post-stroke duration were obtained. Seven-day prevalence of musculoskeletal symptoms among the caregivers and level of stroke survivors' disability were respectively assessed using the Nordic Musculoskeletal Questionnaire and Modified Rankin Scale. Prevalence of musculoskeletal symptoms was presented as percentages while participants' characteristics associated with prevalence of musculoskeletal symptoms were examined using inferential statistics. Results: Mean (SD) age of caregivers and stroke survivors was 33.2 (10.7) years and 58.9 (9.7) years respectively. Majority of the caregivers were females (61.1%), and children of the stroke survivors (58.9%). Prevalence of musculoskeletal symptoms was 82.2%. The low back was the most affected body region (72.2%) followed by the upper back (40%) while musculoskeletal symptoms in the wrist was least prevalent (3.3%). Female caregivers, caregivers of female stroke survivors and spousal caregivers had significantly higher prevalence of musculoskeletal symptoms compared to other categories of caregivers. Only 5 (5.6%) caregivers had however received any training on safe care giving methods while only 21 (28.4%) caregivers with musculoskeletal symptoms had received treatment. Conclusion: With the high prevalence of musculoskeletal symptoms among family caregivers of stroke survivors, effective preventive strategies including training and education as well as timely access to treatment would be required. 

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Like an extended family: Relationships that emerge when older caregivers use written messages to communicate in an ICT-based healthcare service

Objective: To explore the relationships that emerge amongst caregivers of persons with dementia and stroke when caregivers use written messages as their communication tool in a closed information and communication technology (ICT)-based support group. Methods: An explorative design with a qualitative approach was used that applied systematic text condensation (STC) to analyse 173 written messages extracted from a web forum.Results: Empathetic, empowering and familiar relationships emerged amongst peers of older caregivers when the caregivers used written messages as their communication tool. The empathetic relationship was characterised by sincerity and openness when the caregivers shared emotions related to caregiving. The empowering relationship reflected a fellowship based on solidarity influenced by a sense of optimism and a willingness to share knowledge to support one another in overcoming challenges. In the familiar relationship, the caregivers were thoughtful and good-humoured with one another and displayed an attitude of consideration towards one another, as in an extended family. Practice Implication: The use of computer-mediated communication in health care service will change the context of establishing and maintaining interpersonal relationships. Therefore, greater knowledge regarding how the peers of caregivers interact with one another is vital so nurses may better support and educate ICT-based support groups. 

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Reduced mortality rates among caregivers: Does family caregiving provide a stress-buffering effect?

Multiple studies have confirmed a seemingly paradoxical finding that family caregivers have lower mortality rates than comparable samples of noncaregivers. Caregivers are often also found to report more symptoms of depression and higher stress levels, but psychological distress and mortality are rarely examined in the same study. This study tests a possible mechanism for the mortality effect by applying a theoretical model that posits psychological and physiological stress-buffering benefits from prosocial helping behaviors. Participants in the population-based REasons for Geographic and Racial Differences in Stroke (REGARDS) study included 3,580 family caregivers who were individually matched to 3,580 noncaregivers on 15 demographic, health history, and health behavior variables using a propensity score matching algorithm. Baseline measures of depressive symptoms and perceived stress levels were also collected. The results indicated that caregivers reported significantly more depressive symptoms and higher perceived stress levels than propensity-matched noncaregivers (ps < .0001). However, consistent with our previous analysis (Roth et al., 2013), an analysis of 7-year survival rates showed that caregivers had a 16.5% lower mortality rate than noncaregivers (hazard ratio = 0.835, 95% CI = 0.719, 0.970). Significant caregiving*psychological distress interaction effects supported the stress-buffering hypothesis. Both depressive symptoms and perceived stress scores were significant predictors of mortality for the matched noncaregivers (ps < .0001), but not for the caregivers (ps > .49). Family caregiving appears to be similar to other prosocial helping behaviors in that it provides stress-buffering adaptations that ameliorate the impact of stress on major health outcomes such as mortality. (PsycINFO Database Record 

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To be or not to be? A caregiver's question: the lived experience of a stroke family during the first 18 months poststroke

Background: Disability following a stroke often requires family, commonly a spouse, to provide care enabling the stroke survivor to return home. Immediate or extended family and friends may help provide direct care or support the primary caregiver. While family members share the common stroke experience, this is lived within the context of separate lives. Research examining the individual nuances, roles and contribution of family and/or friends forming part of collective stroke networks, has largely been overlooked. Aim: This New Zealand study aimed to explore the lived experience of three stroke family members during the 18 months following a first‐ever stroke. Method: Hermeneutic phenomenology guided the study. Informed consent was obtained prior to individual interviews conducted 6 weeks, 12 months and 18 months poststroke. Findings: Three main themes emerged: (i) Being prepared, (ii) Where you stand changes the view and (iii) Relinquishing and reclaiming. Being prepared revealed how these family members anticipated the stroke and drew on personal and professional experience in facing the phenomenon. The second theme showed the influence of expectation and positionality on family members' experiences. Relinquishing and reclaiming identified loss, grief and a quest for equity in the synthesis of competing stroke survivor and caregiver desires. Conclusions: Familiarity with the caregiving role and experience of unreliable community services led stroke family members to question the primary caregiver's ability to resume caregiving following a family member's stroke. The primary caregiver was physically and emotionally spent, and rest home care for the survivor became the only self‐preserving option. A new caring arrangement was formulated seeking equity for both stroke survivor and caregiver. 

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Benefit finding for Chinese family caregivers of community‐dwelling stroke survivors: A cross‐sectional study

Aims and objectives: To identify whether benefit finding is a mediator or moderator in the relationship between caregiver burden and psychological well‐being (anxiety and depression) in Chinese family caregivers of community‐dwelling stroke survivors. Background: Family caregivers not only bear a heavy burden, a high level of anxiety and depression, but also experience benefit finding (positive effects result from stressful events). However, the relationships among benefit finding, caregiver burden and psychological well‐being in Chinese family caregivers are not well known. Design: This study was a cross‐sectional correlational design. Methods: Caregivers (<italic>n</italic> = 145) of stroke survivors were recruited from two communities in Zhengzhou, China. Data were collected by face‐to‐face interviews with structured questionnaires, examining caregiver burden, benefit finding and psychological well‐being of caregivers. A hierarchical regression analysis explored whether caregiver burden and benefit finding were associated with anxiety and depression of caregivers. The moderator role of benefit finding was examined by testing the significance of the interaction between caregiver burden and benefit finding. A mediational model was used to test benefit finding as a mediator between caregiver burden and psychological well‐being of caregivers using process in spss 21.0. Results: Caregiver burden and benefit finding were significantly associated with both anxiety and depression of caregivers. Benefit finding did not portray a moderating role, but portrayed the mediator role in the relationship between caregiver burden, anxiety and depression in caregivers. Conclusion: This study provides the preliminary evidence to nurses that intervention focus on benefit finding may help improve the psychological well‐being of caregivers. Relevance to clinical practice: This study offers nurses rational for assessing caregiver's negative emotions and benefit finding. By targeting benefit finding, the nurse may guide caregivers in benefit identification and implement interventions to reduce anxiety, depression and caregiver burden. 

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Exemplar models and support for older carers and carers of people with dementia: informing commissioning

This is the report of a project commissioned by NHS England in support of its Commitment to Carers programme. The focus of the work was to scope exemplar models of support for older carers, and carers of people with dementia (of any age). The project reviewed existing literature and knowledge and used this as the foundation for examining developments with invited third sector organisations using an on-line questionnaire and additional semi-structured interviews. The work took place between May 2017 and March 2018 and included a consultation workshop in February 2018 with NHS England and other key stakeholders to refine messages and conclusions. The report describes the work undertaken and presents an analysis of findings, together with conclusions and recommendations for NHS England. 

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Developing a complex intervention programme for informal caregivers of stroke survivors: The Caregivers' Guide

Background Stroke affects the entire family system. Failure to meet the needs of caregivers leads to physical and mental overburdening. Stroke caregivers may benefit from professional support. The literature reviews have shown that there is still no clarity concerning the most appropriate set-up of a support programme. In Germany, there is no stroke caregiver support programme that operates throughout the course of rehabilitation. Aim The aim was to develop a complex intervention programme for stroke caregivers in North-Rhine Westphalia, Germany. Methods A naturalistic enquiry approach, using a mixed-methods design, was applied. Within one overarching qualitative study, three separate, explorative, inductive, qualitative substudies were conducted: (i) seven explorative interviews with experienced stroke caregivers, (ii) six semi-structured interviews with professionals working within stroke rehabilitation and (iii) seventeen participant observations with focus on professional-caregiver interactions. Regional stroke units, rehabilitation centres, outpatient services and the home environment of caregivers were included. By means of a four-step qualitative content analysis, all three data sets were coded, categorised and subsequently condensed into subthemes, clustered into main themes, and finally translated into 'Conceptual Building Blocks' of the programme. Results The need for a personalised, holistic and multicomponent caregiver support programme emerged from all three substudies. Fourteen themes were condensed from the subthemes. Caregivers should be approached directly after stroke using outreach counselling. Support should be provided by a specially trained focal person across the entire patient's rehabilitation trajectory. The newly developed support programme consists of five flexible 'Conceptual Building Blocks': Content, Human Resources, Personalised Approach, Timing and Setting. Conclusion Through a qualitative mixed-methods design, an in-depth contextual understanding of stroke caregiver needs within the rehabilitative support system was reached. This allowed the development of a context tailored comprehensive caregiver support programme consisting of five 'Conceptual Building Blocks'.

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Attitudes towards euthanasia in the context of fear of death among physiotherapists and caregivers of patients with paresis

Background: The permissibility of euthanasia raises many moral dilemmas, dividing the general public on this matter. Attitudes towards euthanasia depend on socio-cultural (age, beliefs) and individual factors (personality traits or working in medical professions). Aim of the study: The aim of the study was to establish attitudes towards euthanasia and the level of anxiety before death among people in close contact with persons suffering from paresis. The hypotheses assumed that contact with disabled patients, who require constant care, and the type of such contact, modify the perceived fear of death and attitudes towards euthanasia. Material and methods: Two clinical groups were involved in the study: physiotherapists dealing with stroke rehabilitation, family caregivers permanently taking care of close relatives of cerebral stroke survivors. The results of the two groups were compared to those of the control group, who were individuals with no personal experience in the care of patients with paresis. Attitudes towards euthanasia were measured in three dimensions: information support, liberal attitudes and conservative attitudes. Results: The results showed no intergroup differences in two dimensions: liberal attitude and the fear of death. Physiotherapists were the least conservative in their attitudes in comparison to other participants and they appreciated the information support more than participants from the control group. Conclusions: The results indicated that everyday contact with the patients suffering from paresis can increase conservative attitudes toward euthanasia but only among caregivers. (English)

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Educational preparation and training of the family caregivers of elderly patients with stroke in the pre-discharge period: A proposed innovation

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. 

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The relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden

Introduction: Stroke is a chronic condition that necessitates multidimensional and overwhelming care. The caregivers of stroke patients are faced with various stressors that can threaten different aspects of their health, especially their mental health. Spiritual attitude and being spiritually oriented contribute significantly to mental health and can be used as a strategy for adapting to the stressful events that are part of the role of caregiving. This study was therefore conducted to investigate the relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden.; Methods: This descriptive cross-sectional study was conducted in 2016. The study population consisted of all the family caregivers of older patients with stroke presenting to health care centers and nursing service companies of Gilan Province in Iran. The participants were selected through convenience sampling and consisted of 407 participants. Data were collected using the Spiritual Attitude Scale and the Caregiver Burden Inventory and were then analyzed in SPSS-18 using Pearson's correlation coefficient at a significance level of 0.05.; Results: The results showed that 88.9% of the caregivers were females. The mean age of the participants was 38.3±8.8 years. The duration of caregiving was <5 years in 84.4% of the participants, while its mean was 4.2±2.5 years. The mean score of spiritual attitude was 108.77±6.20. The majority of the participants (49.3%) had moderate and relatively favorable spiritual attitude (a score of 72-120), 27.8% had high or favorable spiritual attitude; 8.7% had mild burden, 54.4% had moderate burden and 37% had favorable burden. The mean score of burden was 28±12.75. A statistically significant positive relationship was observed in this study between the mean score of spiritual attitude and the total score of burden in all its dimensions, namely, time dependence, as well as the developmental, physical, social and emotional dimensions.; Conclusion: Providing strategies for improving spirituality, such as teaching spiritual self-care, can improve their burden. Given that such strategies are psychologically approved and pose no side effects, they can be used as an effective, low-cost and risk-free approach for all caregivers, so that they can acquire the necessary spiritual support for overcoming the stress caused by caring for family members through the reinforcement of their spiritual beliefs in the ultimate effort to provide effective care to older patients while maintaining their own health and quality of life.

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Evaluation of discharge documentation after hospitalization for stroke patients discharged home in Australia: A cross-sectional, pilot study

In this cross-sectional study, we evaluated the quality of discharge documentation for stroke patients discharged home. Participants were stroke patients discharged from a regional tertiary acute and rehabilitation hospital in Australia from 2014 to 2015. Compliance with expected discharge documentation and its relationship with readmission was measured using an audit instrument for stroke patients (n = 54), and a post-discharge survey of carers was conducted. There were deficits in the documentation of the mechanism of stroke (70%), functional assessments (58%), pending test results (39%), types of support services required after discharge (35%), and patient/carer meetings with the multi-disciplinary stroke team (20%). Readmission was associated with lower compliance scores for information provided to patients or their carer. The survey results suggested that carer burden was high for carers of stroke patients discharged home. Documentation of carer/family meetings with the stroke team, functional assessments, medications, and adequate support services needs to be improved. General practitioners and carers need this information, so that they can address the post-discharge needs of these vulnerable patients.; © 2017 John Wiley & Sons Australia, Ltd.

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Chinese family caregivers of stroke survivors: Determinants of caregiving burden within the first six months

Aims and Objectives: To describe the family caregivers' caregiving experience for stroke survivors and to identify the determinants of caregiving burden over 6 months.; Background: Sociocultural factors influence the caregiving experience in China. However, little is known about the dynamic changes occurring in Chinese caregivers' burden and its determinants.; Design: This is a prospective longitudinal study.; Methods: A total of 328 participants (164 stroke survivors and 164 family caregivers) from the neurological units of three hospitals in Shiyan were examined during a 6-month period at 1-2 days before discharge (T1) and 3 weeks (T2), 3 months (T3) and 6 months (T4) postdischarge using the Short Portable Mental Status Questionnaire, Multidimensional Scale of Perceived Social Support, Caregiver Strain Index and the Center for Epidemiological Studies-Depression.; Results: Of the 209 dyads recruited, 164 completed all data collection phases, with 69% of the female caregivers aged 56.04 (SD = 4.0; range = 22-80) years. Caregivers reported higher mean burden at T1 (7.35 ± 2.9) but slightly decreased over time at T4 (6.34 ± 3.4), had borderline mean depressive symptoms only in T1 (9.71 ± 3.2) and T2 (9.02 ± 3.8) and had moderate mean social support throughout the 6-month period. Determinants of caregiving burden were stroke survivors' physical dependence, caregivers' age, caring hours per day, depressive symptoms and social support, which explained 46.8%-55.0% of the total variance (p < .05).; Conclusion: Caregivers' burden remains a serious problem in the first 6 months. It is an increasing hazard, especially for those at an advanced age who have depressive symptoms and care for severely dependent stroke survivors requiring more caring hours.; Relevance To Clinical Practice: Nurses need to be aware of and understand caregivers' cultural values and beliefs about family obligations when considering an intervention to support them in their role at home.; © 2017 John Wiley & Sons Ltd.

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Correlates of Perceived Social Support in Chinese Adult Child Caregivers of Parent Stroke Survivors

Background: Prevalence of stroke and traditional filial responsibility involve adult children in caregiving to their parent stroke survivors in China. Support resources are insufficient because of the shrinking size of family and the underdeveloped support system. Purpose: The aim of this study was to identify the correlates of perceived social support among adult child caregivers of parent stroke survivors in China. Methods: A cross-sectional correlational design was used in this study. A nonproportional quota sample of 126 adult child caregivers was recruited from Zhejiang Province, China. Data were collected at either the hospital stroke units or the respondents' homes using structured questionnaires of caregiving dyadic demographics and caregiving characteristics, 14-item Activities of Daily Living, 15-item Mutuality Scale, and 12-item Multidimensional Scale of Perceived Social Support. SPSS 17.0 was used for analysis. Results: Caregivers' mutuality, education, full employment or being retired, monthly income, having a co-carer, and having a father as the care receiver were significantly positively associated with caregivers' perceived social support. However, mutuality was not significantly associated with caregivers' perceived social support after the other factors were adjusted. Conclusions/Implications for Practice: Adult child caregivers with higher levels of mutuality, education, or monthly income; who are fully employed or are retired; who have a co-carer; or who are caring for a father perceived more social support. Nursing strategies and social policies need to be directed to enhance caregiver mutuality and support caregiving efforts.

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The influence of Chinese culture on family caregivers of stroke survivors: A qualitative study

Aims and Objectives: To explore and describe the caregiving experiences of Chinese stroke caregivers.; Background: Previous research has indicated that culture can have a significant impact on the stroke caregiving experience. Moreover, scant research exists on stroke caregivers' experience within the Chinese culture.;Design: A qualitative descriptive design was used.; Methods: In-depth, semistructured interviews were conducted with 25 family caregivers of stroke survivors. The interviews were audiotaped, transcribed and analysed. Content analysis was also performed.; Findings: Twenty-five family caregivers of stroke survivors were recruited for the study. On average, respondents were 66 years old (range 45-82 years). Of 25 interviewees, 76% were female, 64% were spouse-caregivers and 36% were children-caregivers. Three themes reflecting the influence of Chinese culture on stroke caregiving emerged from the interviews. (i) Caregiving role perception. Informants accepted caregiving for the sick family member as an expected part of life, a culturally prescribed obligation and an expression of reciprocal love. (ii) Coping strategies. Connecting with family resources and connecting with inner strength were frequently reported coping strategies. (iii) Self-sacrifice. Informants identified self-reliance and feeling of restraint in their utilisation or access of formal caregiving service. Chinese caregivers sacrifice themselves for the care recipients regardless of the hardships and the neglect of their own health.; Conclusion: Our findings provide a comprehensive and culturally sensitive perspective in understanding the experience of stroke caregivers in Chinese communities. Cultural and religious backgrounds were found to influence Chinese stroke caregivers' experience, coping strategies and self-sacrifice behaviour in idiosyncratic ways.; Relevance To Clinical Practice: Research on the practice of culture can serve as a basis for the formulation of specific policies and effective interventions for supporting stroke caregivers of different cultural backgrounds.; © 2017 John Wiley & Sons Ltd.

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Validity and reliability of Chinese version of Adult Carer Quality of Life questionnaire (AC-QoL) in family caregivers of stroke survivors

The Adult Carer Quality of Life questionnaire (AC-QoL) is a reliable and valid instrument used to assess the quality of life (QoL) of adult family caregivers. We explored the psychometric properties and tested the reliability and validity of a Chinese version of the AC-QoL with reliability and validity testing in 409 Chinese stroke caregivers. We used item-total correlation and extreme group comparison to do item analysis. To evaluate its reliability, we used a test-retest reliability approach, intraclass correlation coefficient (ICC), together with Cronbach’s alpha and model-based internal consistency index; to evaluate its validity, we used scale content validity, confirmatory factor analysis (CFA) and exploratory factor analysis (EFA) via principal component analysis with varimax rotation. We found that the CFA did not in fact confirm the original factor model and our EFA yielded a 31-item measure with a five-factor model. In conclusions, although some items performed differently in our analysis of the original English language version and our Chinese language version, our translated AC-QoL is a reliable and valid tool which can be used to assess the quality of life of stroke caregivers in mainland China. Chinese version AC-QoL is a comprehensive and good measurement to understand caregivers and has the potential to be a screening tool to assess QoL of caregiver. 

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Family-led rehabilitation after stroke in India (ATTEND): a randomised controlled trial

Background: Most people with stroke in India have no access to organised rehabilitation services. The effectiveness of training family members to provide stroke rehabilitation is uncertain. Our primary objective was to determine whether family-led stroke rehabilitation, initiated in hospital and continued at home, would be superior to usual care in a low-resource setting. Methods: The Family-led Rehabilitation after Stroke in India (ATTEND) trial was a prospectively randomised open trial with blinded endpoint done across 14 hospitals in India. Patients aged 18 years or older who had had a stroke within the past month, had residual disability and reasonable expectation of survival, and who had an informal family-nominated caregiver were randomly assigned to intervention or usual care by site coordinators using a secure web-based system with minimisation by site and stroke severity. The family members of participants in the intervention group received additional structured rehabilitation training-including information provision, joint goal setting, carer training, and task-specific training-that was started in hospital and continued at home for up to 2 months. The primary outcome was death or dependency at 6 months, defined by scores 3-6 on the modified Rankin scale (range, 0 [no symptoms] to 6 [death]) as assessed by masked observers. Analyses were by intention to treat. This trial is registered with Clinical Trials Registry-India (CTRI/2013/04/003557), Australian New Zealand Clinical Trials Registry (ACTRN12613000078752), and Universal Trial Number (U1111-1138-6707). Findings: Between Jan 13, 2014, and Feb 12, 2016, 1250 patients were randomly assigned to intervention (n=623) or control (n=627) groups. 33 patients were lost to follow-up (14 intervention, 19 control) and five patients withdrew (two intervention, three control). At 6 months, 285 (47%) of 607 patients in the intervention group and 287 (47%) of 605 controls were dead or dependent (odds ratio 0·98, 95% CI 0·78-1·23, p=0·87). 72 (12%) patients in the intervention group and 86 (14%) in the control group died (p=0·27), and we observed no difference in rehospitalisation (89 [14%]patients in the intervention group vs 82 [13%] in the control group; p=0·56). We also found no difference in total non-fatal events (112 events in 82 [13%] intervention patients vs 110 events in 79 [13%] control patients; p=0·80). Interpretation: Although task shifting is an attractive solution for health-care sustainability, our results do not support investment in new stroke rehabilitation services that shift tasks to family caregivers, unless new evidence emerges. A future avenue of research should be to investigate the effects of task shifting to health-care assistants or team-based community care. Funding: The National Health and Medical Research Council of Australia.

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Carer experiences of life after stroke – a qualitative analysis

Aims and objectives. Carers' experiences of caring for a stroke survivor were explored, including reactions and changes in their lives.

Method. A phenomenological approach was taken to the collection and analysis of data. Semi-structured interviews lasting an average of 43 min were carried out with nine informal carers in their own homes. All were married to someone who had survived a stroke.

Results. An overarching theme emerged, entitled: ‘lives turned upside-down’. It took time for participants to understand the long-term impacts of stroke. Carers experienced increased caring and domestic workloads alongside reduced participation and altered expectations of life. They found emotional and cognitive changes in their partners particularly distressing, and would have valued more information and help with adjusting to the increased emotional, physical and cognitive workload of caring.

Conclusions. It is important to support carers of people who have survived a stroke in adjusting to their changed lifestyles. This may affect their quality of life as well as sustainability of caring, and requires further research.

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An investigation of family carers' needs following stroke survivors' discharge from acute hospital care in Australia

Purpose. To expand understanding of informal stroke care-giving, validated tools previously used in Hong Kong and in the UK were used with Australian stroke carers to assess their stroke-related knowledge, perceived needs, satisfaction with services received and sense of burden after stroke patients' discharge home from acute hospital care.

Methods. Record audit and telephone interviews with two cohorts of 32 carers recruited in Sydney and Brisbane 1 and 3 months post-hospital discharge, using validated scales and open questions in May–July 2006.

Results. Female carers, those with prior care-giving responsibility, and those interviewed at three compared to one month post-discharge reported greatest needs and burden from the care-giving role; needs alone significantly predicted burden. Getting information and being prepared for life after discharge were central concerns. Some felt this was accomplished, but inadequate information giving and communication mismatches were apparent.

Conclusions. Service providers need to develop partnership working with stroke families and provide a network of services and inputs that cut across conventional boundaries between health and social care, public, private and voluntary organisations, with care plans that deliver what they delineate. Stroke care-givers have common issues across countries and healthcare systems; collaborative research-based service development is advocated.

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Why do patients with stroke not receive the recommended amount of active therapy (ReAcT)? Study protocol for a multisite case study investigation

Introduction Increased frequency and intensity of inpatient therapy contributes to improved outcomes for stroke survivors. Differences exist in the amount of therapy provided internationally. In England, Wales and Northern Ireland it is recommended that a minimum of 45 min of each active therapy should be provided at least 5 days a week provided the therapy is appropriate and that the patient can tolerate this. Sentinel Stroke National Audit Programme (2014) data demonstrate this standard is not being achieved for most patients. No research been undertaken to explore how therapists in England manage their practice to meet time-specific therapy recommendations. The ReAcT study aims to develop an in-depth understanding of stroke therapy provision, including how the guideline of 45 min a day of each relevant therapy, is interpreted and implemented by therapists, and how it is experienced by stroke-survivors and their families.

Methods and analysis A multisite ethnographic case study design in a minimum of six stroke units will include modified process mapping, observations of service organisation, therapy delivery and documentary analysis. Semistructured interviews with therapists and service managers (n=90), and with patients and informal carers (n=60 pairs) will be conducted. Data will be analysed using the Framework approach.

Ethics and dissemination The study received a favourable ethical opinion via the National Research Ethics Service (reference number: 14/NW/0266). Participants will provide written informed consent or, where stroke-survivors lack capacity, a consultee declaration will be sought. ReAcT is designed to generate insights into the organisational, professional, social, practical and patient-related factors acting as facilitators or barriers to providing the recommended amount of therapy. Provisional recommendations will be debated in consensus meetings with stakeholders who have not participated in ReAcT case studies or interviews. Final recommendations will be disseminated to therapists, service managers, clinical guideline developers and policymakers and stroke-survivors and informal carers.

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Understanding stroke survivors' and informal carers' experiences of and need for primary care and community health services--a systematic review of the qualitative literature: protocol

Introduction Despite the rising prevalence of stroke, no comprehensive model of postacute stroke care exists. Research on stroke has focused on acute care and early supported discharge, with less attention dedicated to longer term support in the community. Likewise, relatively little research has focused on long-term support for informal carers. This review aims to synthesise and appraise extant qualitative evidence on: (1) long-term healthcare needs of stroke survivors and informal carers, and (2) their experiences of primary care and community health services. The review will inform the development of a primary care model for stroke survivors and informal carers.

Methods and analysis We will systematically search 4 databases: MEDLINE, EMBASE, PsycINFO and CINAHL for published qualitative evidence on the needs and experiences of stroke survivors and informal carers of postacute care delivered by primary care and community health services. Additional searches of reference lists and citation indices will be conducted. The quality of articles will be assessed by 2 independent reviewers using a Critical Appraisal Skills Programme (CASP) checklist. Disagreements will be resolved through discussion or third party adjudication. Meta-ethnography will be used to synthesise the literature based on first-order, second-order and third-order constructs. We will construct a theoretical model of stroke survivors’ and informal carers’ experiences of primary care and community health services.

Ethics and dissemination The results of the systematic review will be disseminated via publication in a peer-reviewed journal and presented at a relevant conference. The study does not require ethical approval as no patient identifiable data will be used.

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Supported cognitive-behavioural self-help versus treatment-as-usual for depressed informal carers of stroke survivors (CEDArS): study protocol for a feasibility randomized controlled trial

Background: Increased life expectancy has resulted in a greater provision of informal care within the community for patients with chronic physical health conditions. Informal carers are at greater risk of poor mental health, with one in three informal carers of stroke survivors experiencing depression. However, currently no psychological treatments tailored to the unique needs of depressed informal carers of stroke survivors exist. Furthermore, informal carers of stroke survivors experience a number of barriers to attending traditional face-to-face psychological services, such as lack of time and the demands of the caring role. The increased flexibility associated with supported cognitive behavioral therapy self-help (CBTsh), such as the ability for support to be provided by telephone, email, or face-to-face, alongside shorter support sessions, may help overcome such barriers to access. CBTsh, tailored to depressed informal carers of stroke survivors may represent an effective and acceptable solution.

Methods/Design: This study is a Phase II (feasibility) randomized controlled trial (RCT) following guidance in the MRC Complex Interventions Research Methods Framework. We will randomize a sample of depressed informal carers of stroke survivors to receive CBT self-help supported by mental health paraprofessionals, or treatment-as-usual. Consistent with the objectives of assessing the feasibility of trial design and procedures for a potential larger scale trial we will measure the following outcomes: a) feasibility of patient recruitment (recruitment and refusal rates); (b) feasibility and acceptability of data collection procedures; (c) levels of attrition; (d) likely intervention effect size; (e) variability in number, length and frequency of support sessions estimated to bring about recovery; and (f) acceptability of the intervention. Additionally, we will collect data on the diagnosis of depression, symptoms of depression and anxiety, functional impairment, carer burden, quality of life, and stroke survivor mobility skill, self-care and functional ability, measured at four and six months post-randomization.

Discussion: This study will provide important information for the feasibility and design of a Phase III (effectiveness) trial in the future. If the intervention is identified to be feasible, effective, and acceptable, a written CBTsh intervention for informal carers of stroke survivors, supported by mental health paraprofessionals, could represent a cost-effective model of care.

Trial registration: Current Controlled Trials ISRCTN63590486.

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Care coordination/home-telehealth for veterans with stroke and their caregivers: Addressing an unmet need

Background: Stroke is a life-disrupting, costly event for many stroke patients and their families. An estimated 4.8 million stroke survivors are living in the community with some level of disability, and the incidence of stroke is expected to rise with correspondingly higher costs, both in dollars and other forms of burden for families of patients with stroke. Approximately 80,000 veterans have experienced a stroke, leaving approximately 40% with moderate residual impairments and 15%–30% with severe residual disability. Purpose: The purpose of this study was to identify postdischarge needs of veterans with stroke and their caregivers and to identify how to design a care coordination/home-telehealth (CC/HT) program to address these needs. Method: Veterans and their caregivers (N = 22) were interviewed about their experiences with stroke, their postdischarge stroke recovery needs, and their experiences with the Veterans Administration’s existing Care Coordination/Home-Telehealth (CC/HT) program. Data were analyzed using the process of grounded dimensional analysis. Results: Core concepts identified were (a) assessing and managing the residual effects of stroke, and (b) shifting roles and responsibilities. Conclusion: The findings suggest that a comprehensive care coordination program that includes home telehealth could aid veterans and their caregivers in managing stroke recovery across the continuum of care at home and within the community. The results of the study can provide elements to be included in the CC/HT program.

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Experiences of adult stroke survivors and their parent carers: a qualitative study

Objective: To explore the experiences of adult stroke survivors and their parent carers.

Design: Qualitative methodology: interpretative phenomenological analysis. Setting: Six residential areas across England and south Wales. Participants: Six adult stroke survivors (aged 27–46), six mothers (aged 59–76) and five fathers (aged 55–76).

Method: Semi-structured interviews to explore the relationship and interactions between parent and survivor prior to and after a stroke, with opportunities to explore both positive and negative changes. All interviews were transcribed and analysed by a six step interpretative phenomenological analysis process. Survivors, mothers and fathers were analysed as three separate groups and the results were synthesised.

Results: Identical and interconnected themes emerged from the three groups, permitting synthesis into a single organising framework with four superordinate themes capturing the key issues for all three groups. The four superordinate themes were: ‘emotional turmoil’; ‘significance of parents’; ‘negotiating independence versus dependence’ and ‘changed relationships’.

Conclusions:Parents reported adjusting to caring with relative ease. Survivors did not adjust to being cared for with such ease and felt positioned in a child role. Balancing independence and dependence was a challenge for survivors and parents and is considered within a systemic theory framework. Implications for service developments and guidelines are considered.

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Aphasia blog talk: How does stroke and aphasia affect the carer and their relationship with the person with aphasia?

Background: Carers of stroke survivors with aphasia are at risk of experiencing negative bio-psychosocial consequences and reduced quality of life. So far, in aphasia studies, this has mainly been explored through qualitative interviews and questionnaires. Unsolicited first-person narratives in the form of blogs offer a novel and rich source of data to examine how stroke and aphasia affect the carer and their relationship with the person with aphasia.

Aims: This study explored how carers of people with aphasia perceive their roles and responsibilities; it also examined the consequences of carrying out these carer roles and duties, in terms of both the carer’s own well-being and their relationship with the person with aphasia; furthermore, it investigated facilitative factors in their adaptation to the carer role.

Methods & Procedures: Publically available blogs written by carers of aphasic stroke survivors, which included information on how stroke and aphasia affect the carer and their relationship with the person with aphasia, were analysed using the Framework Method.

Outcomes & Results: The search resulted in nine carer blogs. The number of posts per blog ranged from 13 to 241. For blogs containing over 90 posts, the first and last 30 relevant posts were collected and analysed. New roles and extra responsibilities identified by participants included having to act as therapists, nurses, counsellors, and administrators and carrying out tasks usually assigned to the other person in the relationship. The extra tasks and duties impacted on the carers’ quality of life and their relationship with the person with aphasia in negative ways, such as leading to physical and mental exhaustion, health issues, feeling lonely, and resentful of their circumstances; however, participants also identified positive changes such as new closeness, new appreciation of life, and pride in achievements. A variety of strategies emerged from the data that helped carers adjust to their new roles. Strategies included positive reframing, allocating time to oneself, and seeking support from family and friends. The activity of blogging was also mentioned as having beneficial effects on the carers’ well-being.

Conclusions: The study provides further evidence for the specific challenges faced by carers of people with stroke and aphasia; it thus confirms the importance of addressing carer related needs in intervention and considering psychosocial well-being for both the carer and the person with aphasia.

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The social consequences of living with and dealing with incontinence—A carers perspective

Incontinence is a discrediting and stigmatising condition for those who experience it, as it signifies a person who is lacking in self-control. For their carers, the very nature of undertaking ‘dirty work’ signifies a low status and low paid job. Those health care professionals higher in status and financial reward put distance between themselves and bodywork, especially bodywork that deals with bodily decay. However, little is known or has been highlighted about the social consequences that living with and dealing with incontinence can have on informal carers. In this paper we examine the notion of dirty work and ‘unbounded’ bodies in the role of informal carers. Through qualitative interviews with carers of stroke survivors the negative social consequences of dealing with incontinence for both the survivor and the carer are explored. We also examine the strategies employed by carers and stroke survivors in order to manage the symptom in an attempt to prove the adult status of the survivor and to protect both the identity of the survivor and the carer. The embarrassment of leakage and the moral danger of odour can lead some carers and survivors to make decisions that can isolate both within the confines of their home. In this sense the very meaning of home is transformed into an isolated and marginalised space.

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Cohort study of informal carers of first-time stroke survivors: profile of health and social changes in the first year of caregiving

Informal carers underpin community care policies. An initial cohort of 105 informal live-in carers of new stroke patients from the South Coast of England was followed up before discharge, six weeks after discharge and 15 months after stroke with face-to-face interviews assessing physical and psychological health, and social wellbeing. The carer cohort was compared to a cohort of 50 matched non-carers over the same time period. Carer distress was common (37–54%), started early on in the care-giving experience and continued until 15 months after stroke. Carers were 2.5 times as likely as non-carers to have significant psychological distress. Presence of early distress predicted 90% of those significantly distressed 15 months after stroke. Female carers were likely to develop distress earlier than male carers and in anticipation of the care-giving situation. Male carers developed similar levels of distress but only once the care-giving situation became reality. Further research is needed to establish ways to screen for psychological distress early after onset of caregiving, to find ways to tailor proven support interventions to the individual carer, and to evaluate the effect of early detection and support provision on later carer distress.

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Effect of stroke on family carers and family relationships

The effects of stroke on families are considerable. Family members may struggle to adapt to a care-giving role, and relationships between stroke survivors and those closest to them are often altered by the illness. This article provides an overview of the effects of stroke on family dynamics and identifies interventions to support stroke survivors and their families during this difficult time.

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The effectiveness of psychosocial interventions for stroke family caregivers and stroke survivors: A systematic review and meta-analysis

Objective: To evaluate the effectiveness of psychosocial interventions for family caregivers on their psychosocial and physical wellbeing, quality of life, and the use of healthcare resources by stroke survivors.

Methods: Electronic English and Chinese bibliographic databases were searched (inception to January 2012) for clinical trials. Two reviewers independently selected and appraised study quality. When possible, data from randomized controlled trials (RCTs) were statistically pooled. Otherwise, a narrative summary was used.

Results: Eighteen studies (psychoeducation and social support group) were included. Pooled analysis of two individual psychoeducation programs showed a small effect on improving family functioning (SMD: −0.12; 95% CI: −0.23 to −0.01; p = 0.03). Caregivers receiving psychoeducation that aimed at equipping caregivers with the skills of problem-solving, caregiving, and stress-coping appeared to have a more positive influence on the caregivers’ psychosocial wellbeing and a reduced use of healthcare resources by stroke survivors.

Conclusion: Evidence on the effects of psychosocial interventions was limited. More RCTs of multifaceted psychoeducation programs are needed to further examine the optimal dose and format.

Practical implications: To support caregivers across the stroke trajectory, the core skills of problem-solving and stress-coping should be included in the psychosocial interventions.

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Informal carers’ experience of caring for stroke survivors

Background.  Stroke is the third most common cause of death in industrialized countries and a major cause of adult disability. However, the burden of caring for stroke survivors usually rests with family members who have neither chosen nor volunteered for the role of ‘carer’.

Aims.  This paper reports on a study which aimed to describe the experience of caring for a stroke survivor at one year after stroke in Scotland.

Study design.  Semi-structured, taped interviews were conducted with 90 carers of stroke survivors one year after stroke and the data analysed using NUD*IST. The interviews were part of a larger study, which included the administration of a range of valid and reliable multidimensional instruments to both carers and stroke survivors. The interview prompt schedule had been developed and tested in a previous study.

Findings.  Although a medical emergency, stroke was not always diagnosed or treated as such by either the public or general practitioners. Initially most carers found that they lacked the knowledge and skills to care for the stroke survivor at home and so they had to learn how to obtain the information and assistance required. Carers had to adapt to the changes that stroke effected in the stroke survivor and seek alternative ways of securing the resources they needed for managing their lives. They thought that they had not been prepared adequately for the caring role or assessed satisfactorily in terms of whether they could manage given their skill level, age and/or health status.

Conclusions.  A public health campaign to educate and inform that stroke is a medical emergency is required if stroke disability is to be minimized. The use of new technologies should be considered in facilitating carers’ learning how to care. There is a need to test alternative models of stroke follow-up in multi-centre studies that are holistic and place the carer-stroke survivor at the centre of care.

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British Indian carers of stroke survivors experience higher levels of anxiety and depression than White British carers: findings of a prospective observational study

Carers of stroke survivors face significant burdens, and increased carer strain has negative implications for both the stroke survivor and the carer. In a prospective cohort of White British and British Indian stroke survivors and their carers, we report the incidence of carer strain in each ethnic group, describe patient and carer characteristics, and identify predictors of increased carer strain. Multidimensional outcome measures were used to assess the physical and cognitive function in stroke survivors at one month and 3-6 months from stroke onset. Levels of car strain were assessed at the same time points using the Carer Strain Index and the Hospital Anxiety and Depression Scale. Statistical significance for difference in patient and carer characteristics between White British and British Indian groups was assessed. There were no differences in levels of carer strain between the two ethnic groups. These findings will inform future research, and in turn, may help to guide population-targeted interventions aimed at reducing carer strain.

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Family support for stroke: a randomised controlled trial

BACKGROUND: Attention is currently focused on family care of stroke survivors, but the effectiveness of support services is unclear. We did a single-blind, randomised, controlled trial to assess the impact of family support on stroke patients and their carers.

METHODS: Patients with acute stroke admitted to hospitals in Oxford, UK, were assigned family support or normal care within 6 weeks of stroke. After 6 months, we assessed, for carers, knowledge about stroke, Frenchay activities index, general health questionnaire-28 scores, caregiver strain index, Dartmouth co-op charts, short form 36 (SF-36), and satisfaction scores, and, for patients, knowledge about stroke and use of services, Barthel index, Rivermead mobility index, Frenchay activities index, London handicap scale, hospital anxiety and depression scales, Dartmouth co-op charts, and satisfaction.

FINDINGS: 323 patients and 267 carers were followed up. Carers in the intervention group had significantly better Frenchay activities indices (p=0.03), SF-36 scores (energy p=0.02, mental health p=0.004, pain p=0.03, physical function p=0.025, and general health perception p=0.02), quality of life on the Dartmouth co-op chart (p=0.01), and satisfaction with understanding of stroke (82 vs 71%, p=0.04) than those in the control group. Patients' knowledge about stroke, disability, handicap, quality of life, and satisfaction with services and understanding of stroke did not differ between groups. Fewer patients in the intervention group than in the control group saw a physiotherapist after discharge (44 vs 56%, p=0.04), but use of other services was similar.

INTERPRETATION: Family support significantly increased social activities and improved quality of life for carers, with no significant effects on patients.

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Informal caring for stroke survivors: Meta-ethnographic review of qualitative literature

Stroke is a very common cause of adult disability often leaving stroke survivors dependent on others. Much of this support comes from informal carers. Research has demonstrated the importance of these carers to survivors’ recovery but also suggests that caregiving has adverse consequences. Meta-ethnography was applied to review qualitative research looking at informal stroke carers’ experiences and responses to caring. Electronic databases from 2006 to 2009 were searched and after application of inclusion and exclusion criteria, seven studies were reviewed.

The experience of caring for stroke survivors centres around change and loss overlaid with uncertainty. Change includes changes in roles and relationships. Losses include former relationships, autonomy and taken-for-granted futures. These challenge carers’ perception of their identity.

Carers respond cognitively and practically and attempts to reconstruct their lives may lead to acceptance and adjustment. This process is one of biographical disruption for carers but can result in personal growth.

If carers and stroke survivors are to be supported, acknowledging specific issues including role and relationship changes and perceptions of reduced autonomy may be more valuable than attempting to reduce carer burden or strain. Clinicians frequently only see families over short periods and may therefore have little understanding of the major, long-term disruptive impact of caregiving. If professionals working with families of stroke survivors are made aware of this and of the necessity for carers to come to terms with their changed roles and identities, they will be better equipped to understand and respond to carers’ practical and emotional needs.

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Caregiver's burden, depression and support as predictors of post-stroke depression: a cross-sectional survey

To examine the effects of caregiver's burden, depression, and support on post-stroke depression (PSD), cross-sectional data were obtained from an epidemiologic survey of 225 stroke survivors and their caregivers living in Seoul, Korea. Multivariate analyses showed that, taking the clinical status of patients into account, caregiver's burden, depression and support were related to higher PSD. Perceived burden exerts adverse effects on PSD through its influence on the depression in caregivers. Hence, the care of stroke survivors that incorporates the care of caregivers is likely to reduce the risk of post-stroke depression in patients.

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Informal primary carers of stroke survivors living at home-challenges, satisfactions and coping: a systematic review of qualitative studies

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.

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Building on carers' stories to enrich research: lessons from a recent study

This paper provides an account of how family carers were involved in a longitudinal research study that aimed to investigate the needs of ‘new’ family carers of stroke survivors. An account of how the researcher involved carers is provided, followed by one carer's description of the benefits and negative consequences of being involved in the study. Suggestions are made about how to develop good practice with regard to involving people in research. The conclusions highlight that, although rewarding, being involved in research is not without its challenges. However, research participants have much to contribute to the entire research process and its products. It is important therefore to learn lessons about how best to maximise the expertise that carers and others have to offer.

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Chronic illness and informal carers: 'Non-persons' in the health system, neither carers, workers or citizens

I give an account of disquieting experiences in relation to my treatment and those with chronic illness in the acute system during my 5 years’ experience as an informal caregiver. People with chronic illness (and their caregivers), particularly stroke survivors face a biased, frustrating and even dangerous acute care hospital system where they are second class. Well-being and stability from rehabilitation and self-management can be undermined. Dow and McDonald’s (2007) concept: ‘disenfranchised care contractors’ within early discharge and ‘hospital in the home’ programs is generalised more broadly. The studies that initiated Hospital at Home programs are scrutinised. The Australian medical system relies on informal carers in a fundamental way but still does not identify or acknowledge them despite the presence of laws such as the Carers Recognition Act (2005). A new concept argues informal caregivers ‘do social bonds’ at a deep level, weaving the social fabric into a denser structure. But as part of the private world, the formal system treats them routinely with disrespect and they can be manipulated to obtain their participation in early discharge programs and long term care.

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Carers living with stroke survivors who were incontinent had minimal social interaction and felt socially isolated

QUESTIONWhat are the social consequences for informal carers who live with stroke survivors who have urinary incontinence?DESIGNIn-depth interviews analysed by constant comparison.SETTINGHomes of stroke survivors.PARTICIPANTSPurposive sample of 20 carers 51-86 years of age (65% women) who lived in the same house and provided care to stroke survivors with incontinence for 7 months to 18 years without remuneration; most were spouses, partners, or daughters of care recipients (CRs). Carers were recruited from a UK Medical Research Council Incontinence study and a local Family Support Office.METHODSCarers were interviewed for 45-90 minutes on topics including physical role of carer, effect of caring for someone with stroke on life of carer, onset of stroke, health problems related to stroke, urinary incontinence and leakage, and the CR's family. Interviews were tape recorded (except for 1 written record), transcribed verbatim, coded hierarchically, and analysed for themes.MAIN FINDINGSStrategies for becoming [...]

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Communication outcome after stroke: a new measure of the carer's perspective

Objective: To validate a measure of the carer’s perspective of a stroke survivor’s communication in everyday life.

Design: Cross-sectional, interview-based, psychometric study.  Setting: A community sample from the northwest of England, UK.  Subjects: Fifty-eight carers and 58 stroke survivors with communication problems (aphasia and/or dysarthria) following a stroke within the previous 4—12 months.

Interventions: Administration of the 20-item Carer Communication Outcome after Stroke (Carer COAST) scale, on two occasions, within a two-week period; the 15-item Carers of Older People in Europe (COPE) Index, the patient Communication Outcome after Stroke (COAST) Scale, and collection of demographic and other data relating to the stroke survivor’s disability (Barthel Index), degree of aphasia (Frenchay Aphasia Screening Test) and hospital diagnosis of aphasia/dysarthria.

Main measures: Acceptability (missing values), reliability (internal consistency and test—retest reliability) and construct validity.

Results: Carer COAST showed good acceptability (no incomplete items, sample spread 24—100%), internal consistency and test—retest reliability for the scale (a = 0.94; intraclass correlation (ICC) = 0.91) and its subscales (a = 0.78—0.90; ICC = 0.75—0.87), and indicative evidence on construct validity (Carer COAST, COPE subscales and COAST). There were statistically significant correlations between the communication items of Carer COAST and the negative impact of caregiving (rs = —0.29) and the financial difficulties of caregiving (rs = —0.38).

Conclusions: The Carer COAST scale has considerable potential as a reliable and valid measure of the carer’s perspective on the communication effectiveness of stroke survivors. Intercorrelations with COPE provide specific evidence of the impact of caring for a person with communication difficulties following a stroke.

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"Sometimes we get it wrong but we keep on trying": A cross-sectional study of coping with communication problems by informal carers of stroke survivors with aphasia

Background: The need to support carers of stroke survivors is widely recognised. However, research on which to base recommendations is scarce. Little research has focused on carers of stroke survivors with aphasia, and that which exists suffers from problems with sample size and methodology. More information is needed about methods used by carers to manage communication difficulties and about coping strategies that promote emotional wellbeing.

Aims: To assess the coping strategies used by informal carers of stroke survivors with aphasia to manage communication problems, and their association with depressive symptoms. To assess whether a problem-specific coping inventory offers an advantage over a generic coping questionnaire for this purpose.

Methods & Procedures: Questionnaires were completed by 150 informal caregivers of stroke survivors with aphasia. The Centre for Epidemiologic Studies Depression Scale measured depressive symptoms. Coping was assessed with the Brief COPE and a problem-specific questionnaire on coping with communication difficulties. Level of social support was also assessed. Multiple regression analysis explored associations between coping and depressive symptoms. Mediation analysis assessed the significance of the indirect effect of coping between the level of communication impairment in the stroke survivor and the degree of depressive symptoms in the carer.

Outcomes & Results: Participants reported a wide range of coping strategies. Avoidant styles of coping were associated with increased depressive symptomatology. Coping by use of positive reframing was linked with fewer symptoms of depression. Anticipated level of social support was also associated with less depressive symptomology. The level of communication impairment of the stroke survivor was not predictive of depressive symptoms in carers after controlling for coping and social support. Limited support was found for a mediating model of coping. Inclusion of one subscale from the problem-specific questionnaire improved the amount of variance accounted for in depressive symptoms, above that explained by the Brief COPE.

Conclusions: The results verify that the impairment of the stroke survivor has less effect on carers' psychosocial functioning compared to coping. Assessment of coping can help to identify carers presenting with increased risk of depression. A traditional coping inventory provides an adequate assessment of the coping strategies used to manage communication problems, and can be supplemented by specific questions about avoidance. Interventions that develop some emotion-focused coping strategies in carers may support adaptation. Interventions should also aim to decrease the use of unhelpful coping strategies rather than solely focusing on increasing problem-focused forms of coping.

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A review of the early discharge experiences of stroke survivors and their carers

Aims and objectives.  Understanding the experiences of stroke patients and their carers during the early days following discharge from hospital is an important aspect of providing appropriate care during this crucial time.

Background.  Due to the diverse changes that can result from a stroke, adjustment to returning home may raise many issues for those involved. A review of research was undertaken with the aim of identifying what is already known about experiences at this time.

Design.  Systematic review.  Method.  Search of electronic databases.

Results.  The review revealed that recognition of the impact of stroke on patients and carers is improving, with many studies focussing on the longer-term aspects of stroke recovery. Research into the early discharge experiences of stroke patients and/or their carers is often limited to retrospective, longitudinal studies. With the continuing shift towards care in the community, patients and carers can increasingly expect more recovery to be taking place at home at an even earlier stage. Earlier discharge may have important implications for those involved. The review also highlighted that patients with aphasia have frequently been excluded from stroke research and that social roles are important aspects in stroke recovery.

Conclusions.  To prepare patients and carers better for the impact of returning home, further research is needed into their experiences at this significant time, particularly in the UK. There is also a need to facilitate the inclusion of those with aphasia in stroke research.

Relevance to clinical practice.  An improved understanding of the issues facing stroke patients and carers during their early days at home should facilitate the preparation for discharge in the hospital setting and allow more focussed follow-up services in the community.

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Stroke: the increasing complexity of carer needs

In Australia, more than 346,000 individuals who experience a stroke return to living in their homes with varying degrees of disability. They rely on emotional and physical support from informal carers, typically family members. Informal carers have an indispensable role in patient care poststroke, and the ability of carers to manage this role effectively is crucial for stroke survivors to be able to return home. The aim of this study was to examine the impact of the caring role on carers of stroke survivors, particularly the services provided and the levels of depression and well-being experienced. The study used a longitudinal design incorporating survey methods. Stroke survivors were assessed for functional ability, quality of life, and depression using three assessment tools: the Stroke Impact Scale, World Health Organization Quality of Life-BREF scale, and Zung Self-Rating Depression Scale. A total of 26 people were surveyed: 13 stroke survivors and their 13 carers. Carer knowledge of stroke support services was also explored. Information was collected by using survey methods and structured interviews at 3 weeks and at 3 months postdischarge. The main finding was that depression scores for carers and stroke survivors were below Australian norms at both assessment time points. The major concern identified by carers was poor follow-up procedures for initiating rehabilitation in the home. This study highlighted that a lack of appropriate discharge planning, in conjunction with early discharge of stroke survivors, can have an impact on the rehabilitation process and place increased and unrealistic demands on carers.

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Rethinking Intervention Strategies in Stroke Family Caregiving

Stroke is a condition that affects both patients and family members who provide care and support. Because stroke is an unexpected traumatic event that suddenly forces family members into a caregiving role, caregivers often experience an overwhelming sense of burden, depression, and isolation; a decline in physical and mental health; and reduced quality of life. Caregiver health is inextricably linked to a stroke survivor's physical, cognitive, and psychological recovery. Evidence suggests that informational interventions alone are not as effective in meeting the complex needs of stroke caregivers as interventions that combine information with other support services. This article discusses issues related to stroke caregiving and proposes comprehensive strategies designed to meet the poststroke recovery needs of both patients and caregivers. Suggested strategies include a comprehensive assessment specific to caregiver needs, skills, and resources and case management services designed to provide continuity of care across the stroke-recovery trajectory.

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Loss of autonomy, control and independence when caring: a qualitative study of informal carers of stroke survivors in the first three months after discharge

Purpose. Stroke has far reaching effects on both stroke survivors and their informal carers. Research has highlighted changes in autonomy of stroke survivors, but insufficient focus has been put on the associated reduced control and independence of their informal carers. This study investigates the experiences of informal carers of stroke survivors from discharge to 3 months later.

Method. A purposive sample of 31 informal carers was interviewed in depth just prior to discharge, 1 month and 3 months post-discharge. Interviews lasted 30–90 min and were audio-taped and transcribed. Data analysis was ongoing starting during data collection and ending with themes that described and helped understand carers' experiences.

Results. Carers described reductions in their autonomy and independence but also over time identified strategies to manage these changes and to increase control in their lives. These strategies included selection, optimisation, compensation, asking for and accepting help and negotiation. Some carers, especially older carers and those with prior caring experience, were less likely to describe changes in autonomy and control.

Conclusions. Carers' reduced autonomy and independence should be recognised by practitioners and service providers. Helping carers to negotiate choice and control over the support offered could help increase their autonomy and independence. To offer improved support to these carers, greater attention should to given to the diversity of their situations and experiences.

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A comparison of working versus nonworking family caregivers of stroke survivors

Because of the trend toward shorter hospital stays, family caregivers of stroke survivors are expected to accept more responsibility for helping survivors during the subacute recovery process. The caregiver role is associated with negative health outcomes, yet existing literature differs on whether work status is a contributor. The purpose of this secondary analysis was to examine how caregiving affects employment and to compare characteristics of working and nonworking caregivers. Baseline data of family caregivers (N = 132) caring for stroke survivors 3-9 months after stroke and enrolled in a national multisite study were used. Caregiver characteristics of physical health, depression, fatigue, family functioning, and family conflict were measured. A total of 36% of caregivers reduced their work hours, resigned, or retired from their jobs to care for their family member. A larger proportion (n= 25, 66%) of minority caregivers were employed (full time or part time) compared to white caregivers (n = 43, 46%). Caregivers employed full time were younger and in better physical health but were at higher risk for depressive symptoms than nonworking caregivers. Family function and conflict were similar between the groups, but working caregivers received more assistance from other family members. Healthcare professionals and employers can use these findings to assist them with recognizing the needs of employed caregivers and offering support measures to facilitate their dual role.

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Effectiveness of sensory discrimination training when delivered by family members: a pilot study

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.

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Stroke survivor and carer perspectives of the concept of recovery: a qualitative study

Purpose: This study was designed to explore the concept of recovery from the perspectives of stroke survivors and informal carers. The aim of this qualitative study was to identify the main factors that are perceived to contribute to recovery after stroke. Method: Data were obtained via focus groups using semistructured questionnaires. One focus group included all participants (n = 14). This was followed by separate focus groups for stroke survivors (n = 8) and informal carers (n = 6). The data from the three focus groups were analysed using thematic analysis, whereby themes and sub-themes were identified and summarised via dual coding. Results: The main theme identified was “individual recovery expectations”. The contributing sub-themes were: “essential elements of recovery”, “returning home” and “the environment of rehabilitation”. The predominant factors to arise from this study surround the concepts of “returning to normality” for the stroke survivor and the “tension of providing care” for informal carers. Conclusions: This study provides a current description of stroke survivor and carer expectations of recovery. There are diverse and ongoing concerns that can be encountered into the chronic phase poststroke. Models of community-based care should adopt targeted interventions that concurrently consider stroke survivor and carer’s individual concepts of recovery.

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An exploratory study of anxiety in carers of stroke survivors

Aims and objectives. To investigate anxiety in informal carers of stroke survivors in the first three months after discharge. Background. Informal carers, also called caregivers, play a vital role in supporting stroke survivors. However, caring for stroke survivors can have adverse consequences amongst carers such as burden, stress and reduced quality of life. Emotional distress is also commonly reported but anxiety has received less attention than depression. Design. Prospective, longitudinal, descriptive study. Method. Forty-five carers completed the Hospital Anxiety and Depression Scale on two occasions – within one month and at three months after discharge from stroke and rehabilitation units. Results. Carers were more likely to have scores indicating anxiety than depression. In the first month, half the carers (51·1%) scored in the cut-off for anxiety and a third were in the cut-off for depression (31·1%). At three months, the picture was very similar with nearly identical proportions in the anxious and depressed categories (48·9% and 28·9%, respectively). Changes in numbers of cases of anxiety and depression and in mean anxiety scores were non-significant but there was a significant decrease in depression scores (p = 0·048). Fourteen carers (31·1%) at one month and eleven (24·4%) at three months fell into both anxious and depressed categories. Conclusions.  Anxiety is a relatively neglected emotional outcome in stroke carers. Our study suggests anxiety is an important issue very early in caring whilst other research suggests it remains prevalent for many months. Given the significant role carers play in rehabilitation of stroke survivors, greater recognition of their emotional state is required. Further, longitudinal research with larger sample sizes from a range of geographical areas and improved understanding of factors associated with anxiety is needed. Relevance to clinical practice.  Nurses working in the community are ideally placed to identify and support carers suffering from anxiety.

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Assessing satisfaction with social care services among black and minority ethnic and white British carers of stroke survivors in England

Overall satisfaction levels with social care are usually high but lower levels have been reported among black and minority ethnic (BME) service users in England. Reasons for this are poorly understood. This qualitative study therefore explored satisfaction with services among informal carer participants from five different ethnic groups. Fifty-seven carers (black Caribbean, black African, Asian Indian, Asian Pakistani and white British) were recruited from voluntary sector organisations and a local hospital in England, and took part in semi-structured interviews using cognitive interviewing and the critical incident technique. Interviews took place from summer 2013 to spring 2014. Thematic analysis of the interviews showed that participants often struggled to identify specific ‘incidents’, especially satisfactory ones. When describing satisfactory services, participants talked mostly about specific individuals and relationships. Unsatisfactory experiences centred on services overall. When rating services using cognitive interviewing, explicit comparisons with expectations or experiences with other services were common. Highest satisfaction ratings tended to be justified by positive personal characteristics among practitioners, trust and relationships. Lower level ratings were mostly explained by inconsistency in services, insufficient or poor care. Lowest level ratings were rare. Overall, few differences between ethnic groups were identified, although white British participants rated services higher overall giving more top ratings. White British participants also frequently took a more overall view of services, highlighting some concerns but still giving top ratings, while South Asian carers in particular focused on negative aspects of services. Together these methods provide insight into what participants mean by satisfactory and unsatisfactory services. Cognitive interviewing was more challenging for some BME participants, possibly a reflection of the meaningfulness of the concept of service satisfaction to them. Future research should include comparisons between BME and white participants’ understanding of the most positive parts of satisfaction scales and should focus on dissatisfied participants.

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Patients' and carers' experiences of gaining access to acute stroke care: a qualitatitve study

Background Rapid access to acute stroke care is essential to improve stroke patient outcomes. Policy recommendations for the emergency management of stroke have resulted in significant changes to stroke services, including the introduction of hyper-acute care.

Objective To explore patients’ and carers’ experiences of gaining access to acute stroke care and identify the factors that enabled or prevented stroke from being treated as a medical emergency.

Methods Qualitative semi-structured interviews were conducted with 59 stroke survivors and carers who had received care at seven UK centres. The interviews were recorded and transcribed verbatim and thematic analysis was undertaken.

Results Themes emerging showed that participants recognised signs and symptoms, they were satisfied with access to emergency medical services (EMS), and they experienced setbacks in the emergency department and delays caused by the lack of availability of specialist services outside normal working hours. Awareness of the importance of time to treatment was generally attributed to the UK stroke awareness campaign, although some felt the message was not sufficiently comprehensive. This awareness led to increased frustration when participants perceived a lack of urgency in the provision of assessment and medical care.

Conclusions The stroke awareness social marketing campaign has contributed to public knowledge and was perceived to assist in reducing prehospital delay. It has also resulted in an enhanced knowledge of the significance of rapid treatment on admission to hospital and raised public expectation of EMS and stroke services to act fast. More research is required to assist organisational change to reduce in-hospital delay.

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Creating a Supportive Environment for Living with Stroke in Rural Areas: Two Low-Cost Community-Based Interventions

With the growing burden of chronic illness affecting aging populations, rural health systems are faced with unique challenges to support and promote health in their communities. The Yarmouth Stroke Project was a 5-year initiative aimed at improving health care services for stroke survivors in rural Nova Scotia, Canada. A needs assessment indicated a lack of support to self-manage stroke during community re-integration. The needs reported by stroke survivors and their caregivers included informational and emotional support. A logic model approach was used to frame program planning leading to the design of two low-cost interventions. The first, a Community Resource Guide, was developed to address informational needs and enable stroke survivors to access community-specific resources. The second intervention, designed to address the emotional support needs of stroke survivors and their caregivers, involved collection and publication of local narratives. The stories described the experiences of community members affected by stroke, offering practical knowledge and messages of hope. The resource guide and stories represent two low-cost strategies for supporting and promoting the health of people living with stroke in rural settings.

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Stroke Survivor Depressive Symptoms Are Associated With Family Caregiver Depression During the First 2 Years Poststroke

Background and Purpose—Behavioral and psychological symptoms associated with stroke are gaining increasing attention in a field in which recovery of physical function has dominated. A small body of research has begun to suggest that stroke survivors' (SSs') behavioral and psychological symptoms contribute to family caregivers' experiences of emotional distress. The objective of this research was to determine the unique contribution of SS behavioral and psychological symptoms on caregiver emotional distress during the first 2 years poststroke.

Method—A longitudinal cohort study was conducted of individuals who have survived their first stroke and their caregivers. Participants completed standardized measures by telephone interviews at 1, 3, 6, and 12 months poststroke. A subsample completed additional assessments 18 and 24 months poststroke. These longitudinal data were analyzed using mixed effects modeling.

Results—Three hundred ninety-nine SS/caregiver dyads participated. Overall, caregivers reported more emotional distress when caring for SSs exhibiting more depressive symptoms and more cognitive impairment and when caregivers were younger, female, in poorer physical health, experienced more lifestyle interference, and reported less mastery. SSs' physical disability, stroke severity, and comorbidity were not significant. The set of significant predictors remained consistent when examined in the subsample followed for 2 years (except SS cognitive impairment).

Conclusions—Interventions aimed at improving caregiver well-being should focus on enhancing clinical management of SSs' depression and better preparing caregivers to manage behavioral and psychological symptoms. In addition, respite programs that encourage caregivers to maintain participation in valued activities may be beneficial.

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Managing uncertainty in life after stroke: a qualitative study of the experiences of established and new informal carers in the first 3 months after discharge

Background: Caring for stroke survivors at home can have an enormous impact on informal carers and past research has tended to focus on the negative emotional consequences of caring, with few identifying any positive outcomes. Despite an awareness that the experiences of these carers change over time, there is a dearth of qualitative studies investigating carers’ experiences over time.

Objectives: To investigate the experiences of informal carers of stroke survivors over time.

Design: Qualitative study.

Setting: Carers of stroke survivors from one acute and two rehabilitation units in South-West London.

Participants: A purposive sample of 31 informal carers of stroke survivors discharged from inpatient treatment and rehabilitation returning home were interviewed. The majority of participants’ were spouses but they also included adult sons and daughters. Most participants were post-retirement age.

Methods: Audio-taped in-depth interviews of 30–90 min duration were undertaken at three time points—close to discharge, 1 month and 3 months post-discharge. Interviews were transcribed immediately after each interview. Analysis was an ongoing process starting during data collection and ending with themes. As themes emerged they were identified and discussed with other members of the team so that any patterns across the interviews were noted. Themes were followed up at subsequent interviews. This process enabled progressive focusing of ideas and also validated respondents’ accounts.

Results: There were a total of 81 interviews and these carers were similar demographically to other carers in stroke research. A central theme of uncertainty with a number of other interconnected themes were identified. Other themes including adopting routines and strategies, absolute and relative positives and questioning the future could be seen to both influence and be influenced by uncertainty. These themes can all be related to the changes in carers’ lives or the management of uncertainty around stroke. Differences in experiences and coping strategies were identified between new carers and those with prior caring experience.

Conclusions: Carers experience considerable uncertainty when caring for stroke survivors. Living with uncertainty is central to these carers’ experiences and this should be acknowledged by clinicians when supporting stroke survivors and carers. Encouraging the identification of the positive aspects of caring may help carers manage the challenges and uncertainties created by stroke.

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A comprehensive assessment of family caregivers of stroke survivors during inpatient rehabilitation

Purpose: Stroke caregivers have been identified as a group at high risk for poor outcomes as a result of the suddenness of stroke and a potentially high level of care needed due to significant functional limitations of the patient. However, there is little research on the assessment of family members who will assume the caregiving role prior to patient discharge from rehabilitation. The purpose of this article is to delineate critical assessment domains identified by a subset of spousal stroke caregivers. Methods: Semi-structured interviews were conducted pre- and post-discharge from rehabilitation as part of a larger study that focused on identifying caregiver and stroke survivor needs as they transitioned home from inpatient rehabilitation. For this study, two semi-structured interviews with 14 spousal caregivers were analyzed using grounded theory methods. Results: Long-term stroke survivor outcomes were dependent upon the commitment, capacity and preparedness of the family caregiver. Twelve domains of assessment were identified and presented. Conclusions: A comprehensive, systematic caregiver assessment to understand the caregiver’s concerns about stroke should be conducted during rehabilitation to help the team to develop a plan to address unmet needs and better prepare family caregivers to take on the caregiving role.

Implications for Rehabilitation

  • Stroke is a sudden event that often leaves stroke survivors and their families in crisis.

  • The needs of stroke family caregivers are not often systematically assessed as part of inpatient rehabilitation.

  • Long-term stroke survivor outcomes are dependent upon the commitment, capacity and preparedness of the family caregiver.

  • Stroke caregiver assessment should include the commitment, capacity and preparedness to provide care, and the overall impact of stroke in order to develop discharge plans that will adequately address the needs of the stroke survivor/caregiver dyad.

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Stroke caregivers' strain prevalence and determinants in the first six months after stroke

PURPOSE: Many disabled stroke survivors live at home supported by informal caregivers. Research has revealed that these caregivers are experiencing strain. This study aims to examine the prevalence and differences over time of caregivers' strain in the first 6 months post-stroke and to predict caregiver strain based on patients' and caregivers' characteristics and service input.

METHOD: Ninety consecutive patients and their caregivers were assessed at 2, 4 and 6 months post-stroke. The Caregiver Strain Index was used to evaluate strain. Patients' motor function, functional ability, health status, emotion and participation and caregivers' gender and relation to the patient and service input after discharge were measured to determine the predictive factors.

RESULTS: Nearly one out of three caregivers experienced strain. No differences were seen between 2, 4 and 6 months post-stroke. Correlation and multiple regression analyses revealed that in predicting strain, the patients' functional and activity level plays an important role in the sub-acute phase while the participation level gets more important over time.

CONCLUSIONS: These findings emphasize the importance of maximal physical recovery and optimal reintegration in the community. This is not only essential for the patients themselves but also a pre-requisite to reduce the strain of their caregivers.

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Perceptions of the role of general practice and practical support measures for carers of stroke survivors: a qualitative study

Background: Informal carers frequently suffer adverse consequences from caring. General practice teams are well positioned to support them. However, what carers of stroke survivors want and expect from general practice, and the practical support measures they might like, remain largely unexplored.

The aims of this study are twofold. Firstly it explores both the support stroke carers would like from general practice and their reactions to the community based support proposed in the New Deal. Secondly, perceptions of a general practice team are investigated covering similar topics to carer interviews but from their perspective.

Methods: Semi-structured interviews were conducted with 13 stroke carers and 10 members of a general practice team. Carers' experiences and expectations of general practice and opinions of support measures from recent government policy were explored. General practice professionals were asked about their perceived role and their perceptions of carers' support needs. Interviews were content analysed.

Results: Carers' expectations of support from general practice were low and they neither received nor expected much support for themselves. General practice was seen as reactive primarily because of time constraints. Some carers would appreciate emotional support but others did not want additional services. Responses to recent policy initiatives were mixed with carers saying these might benefit other carers but not themselves.

General practice professionals' opinions were broadly similar. They recognise carers' support needs but see their role as reactive, focussed on stroke survivors, rather than carers. Caring was recognised as challenging. Providing emotional support and referral were seen as important but identification of carers was considered difficult. Time constraints limit their support. Responses to recent policy initiatives were positive.

Conclusions: Carers' expectations of support from general practice for themselves are low and teams are seen as reactive and time constrained. Both the carers and the general practice team participants emphasised the valuable role of general practice team in supporting stroke survivors. Research is needed to determine general practice teams' awareness and identification of carers and of the difficulties they encounter supporting stroke carers. Carer policy initiatives need greater specificity with greater attention to diversity in carer needs.

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'Seeking': a key activity for new family carers of stroke survivors

Stroke is one of the major causes of disability in the United Kingdom and considerable numbers of stroke survivors need help and support from family carers, The sudden and unexpected nature of stroke means that there is very little time for family members to prepare for a caring role. This paper draws on data from 37 interviews with 14 new carers of stroke survivors and highlights the uncertainty and lack of confidence that family members experience in adopting a caring role. During the initial period following the stroke carers engage in a number of different 'seeking' activities in order to try and ensure that they feel competent, confident and safe to provide care and that they understand the likely future demands they may face. Rather than being facilitated by staff, carers' efforts often go unnoticed or are overlooked, resulting in carers feeling that they are 'going it alone'. Staff need to be more aware of carers' 'seeking' behaviour and actively encourage the formation of partnerships with family members.

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What really matters: an inquiry into the relative importance of dimensions of informal caregiver burden

Objective: Prevailing measures of subjective caregiver burden either have no overall summary score or do not consider the relative importance caregivers attach to different dimensions of burden. Our aim was to assess which dimensions informal caregivers perceive as being important to their overall burden from care giving.

Design: Cross-sectional.

Subjects: Data were pooled from two Dutch samples of primary informal caregivers covering a wide range of chronic care-giving situations: caregivers for stroke survivors (n = 196) and caregivers for individuals with rheumatoid arthritis (RA) (n = 131).

Main measures: Subjective burden of care giving was assessed using the Caregiver Reaction Assessment (CRA) and the Self-Rated Burden scale (SRB).

Results: In the total sample four of the five dimensions of the CRA were found to contribute to the overall subjective burden experienced by informal caregivers. In the individual stroke and RA samples only two of the five dimensions emerged as relevant. SRB scores were significantly higher for caregivers of stroke patients, but no differences were found for the five dimensions of the CRA between the two samples.

Conclusions: The dimensions of CRA are not equally important to the overall subjective burden of informal caregivers. To assess overall subjective burden, a measure based on a caregiver's own assessment of burden such as SRB needs to be used in addition to prevailing measures.

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PRECiS (Patient Reported Evaluation of Cognitive State): Psychometric evaluation of a new patient reported outcome measure of the impact of stroke

OBJECTIVE: Determine the psychometric properties of PRECiS (Patient Reported Evaluation of Cognitive State): A new patient-centred, patient reported outcome measure for perceived impact of cognitive problems, developed through qualitative work, systematic review and service user consultation.

DESIGN: An observational study exploring acceptability, internal consistency, construct validity, inter-rater reliability and test-retest reliability, with opportunistic qualitative data on sensitivity to change.

SETTING: Home visits in the community.

PARTICIPANTS: Stroke survivors with self-reported cognitive difficulties and informal carers.

MEASURES: The 27 item PRECiS was self-completed with support, and proxy completed by informal carers. We collected descriptive cognitive screening test data, and measures of overall stroke impact, mood and activities of daily living to explore construct validity.

RESULTS: Data were collected from 159 (visit 1) and 66 (visit 2) stroke survivors and 86 informal carers. PRECiS showed good acceptability (no missing values or floor/ceiling effects, minimal skewness); high internal consistency (α = 0.94, indicative of potential redundancy); with moderate to strong construct correlations in the directions hypothesised (0.40 to 0.74). An intraclass correlation coefficient of 0.85 indicated good test-retest reliability. Where self-reported change had occurred from visit 1 to 2, PRECiS appeared sensitive. Using carers as proxy respondents is not supported by this analysis (inter-rater ICC = 0.43).

CONCLUSIONS: PRECiS is a patient-centred, practical and reliable measure assessing perceived impact of cognitive problems from the unique perspective of stroke survivors.

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Informal carers of stroke survivors-factors influencing carers: a systematic review of quantitative studies

Purpose. Despite increasing evidence of adverse effects on informal carers of caring for stroke survivors, little is known about the characteristics of carers and survivors that influence carer outcomes. The purpose of this review is to summarize factors influencing outcomes in carers of stroke survivors. Methods. A systematic review of studies identified from English language medicine, nursing and psychology databases from 1996 - 2006 was carried out. Results. Thirty-nine studies were identified. Studies from Europe and the USA investigating negative carer outcomes dominated. Carer psychological characteristics and survivor disability were shown to influence carer outcomes. However, the diversity of carers and outcomes investigated and differences in study timing post-stroke make generalizations difficult. Conclusions. Despite improvements in study design over the last two decades, atheoretical studies employing overlapping concepts and poorly defined participants still dominate. Future studies should have theoretical underpinning and should acknowledge the diversity of carers, survivors and their situations. In addition, future emphasis on positive carer outcomes may improve understanding of protective carer factors.

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The hard work starts now: a glimpse into the lives of carers of community-dwelling stroke survivors

Aims and objectives.  To explore the personal experiences of carers of stroke survivors and to elicit their views and opinions of what constitute the major issues and concerns of people in their situation.

Background.  The unexpected nature of stroke can propel people into the role of carer with little or no warning. Some carers of stroke survivors suffer from considerable stress and a range of psychological and physical disorders.

Design.  A small-scale qualitative study of experienced carers of stroke survivors.

Method.  Ten carers with experience of caring for a stroke survivor were recruited to the study through community stroke staff. Data were collected using semi-structured interviews and a focus group.

Results.  The women’s main concerns were focused around the need for information and support, including the need for some preparation and training in the necessary skills of caring.

Conclusions.  To understand fully the lives that carers lead, it is necessary to explore what carers want to do, and expect to do, for the care-recipient. There is a need to develop an understanding of factors that appear to be protective against stress, to identify how they can be enhanced and to develop ways to minimise the impact of those factors that have a detrimental impact on the well-being of carers and on those for whom they care.

Relevance to clinical practice.  Health professionals need to ensure that appropriate information is clearly provided for carers. Communication between health professionals to ensure the ‘joined up’ provision of therapeutic services is another area for continual development. Carers expressed the wish to be better prepared to take on the caring role in the home and would have welcomed some training in this area.

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Thai stroke patient caregivers: Who they are and what they need

Background and Purposes: Primary informal caregivers play a significant role in providing care to stroke survivors after having been discharged from the hospital. Our aims were to describe the characteristics of Thai stroke caregivers and to explore their needs while providing care to their stroke relatives. Methods: Using open-ended questions, we individually interviewed 20 caregivers of stroke survivors to identify their characteristics and their own needs. Additional field notes were made during all interviews. Results: Our findings revealed that the majority of Thai informal stroke caregivers in this study were female, mostly daughters, with the exception of 2 Thai primary stroke caregivers found to be nieces. The majority of caregivers provided care to their stroke relatives 24 h per day. The four major categories of informal rehabilitation were: physical, psychological, social, and spiritual rehabilitation activities. Assistance, information and social support were the three main needs of the caregivers. Conclusion: Based on these findings, appropriate nursing information and assistance focusing on rehabilitation and stroke caregivers’ needs should be provided to Thai stroke caregivers performing informal care to ensure that both patients and caregivers have the best possible quality of life.

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New Deal for Carers or unfair deal: what is in it for informal carers of stroke survivors?

Proposals for the New Deal for Carers, launched in 2007, include improved access to information via a helpline and carer training. Using informal (unpaid, usually family) stroke carers as an example, we examine research evidence for whether these carers might benefit from the proposals. We argue that too little attention is being paid to the available research and despite some generic carer problems, carer diversity means this poorly targeted input is likely to have little impact. Despite the fact that informal carers save the UK economy enormous sums of money, the budget for the proposals is woefully inadequate. Money might be better spent on increasing uptake of benefits and facilitating primary care to increase support.

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Informal carers' experience of caring for stroke survivors

BACKGROUND: Stroke is the third most common cause of death in industrialized countries and a major cause of adult disability. However, the burden of caring for stroke survivors usually rests with family members who have neither chosen nor volunteered for the role of 'carer'.

AIMS: This paper reports on a study which aimed to describe the experience of caring for a stroke survivor at one year after stroke in Scotland.

STUDY DESIGN: Semi-structured, taped interviews were conducted with 90 carers of stroke survivors one year after stroke and the data analysed using NUD*IST. The interviews were part of a larger study, which included the administration of a range of valid and reliable multidimensional instruments to both carers and stroke survivors. The interview prompt schedule had been developed and tested in a previous study.

FINDINGS: Although a medical emergency, stroke was not always diagnosed or treated as such by either the public or general practitioners. Initially most carers found that they lacked the knowledge and skills to care for the stroke survivor at home and so they had to learn how to obtain the information and assistance required. Carers had to adapt to the changes that stroke effected in the stroke survivor and seek alternative ways of securing the resources they needed for managing their lives. They thought that they had not been prepared adequately for the caring role or assessed satisfactorily in terms of whether they could manage given their skill level, age and/or health status.

CONCLUSIONS: A public health campaign to educate and inform that stroke is a medical emergency is required if stroke disability is to be minimized. The use of new technologies should be considered in facilitating carers' learning how to care. There is a need to test alternative models of stroke follow-up in multi-centre studies that are holistic and place the carer-stroke survivor at the centre of care.

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The caregiving relationship and quality of life among partners of stroke survivors: A cross-sectional study

Background: Since the majority of stroke survivors return home following their stroke, families play a pivotal role in their care. Few studies have addressed both positive and negative aspects of this role or the broader construct of health-related quality of life (HRQL). Furthermore, little consideration has been given to the context of care in terms of relationship quality, and reciprocity. The present study examined the relationships between caregiver quality of life (HRQL), caregiver role, relationship satisfaction, balance and reciprocity in caregivers of partners who had experienced a stroke. Specific hypotheses were made based on equity theory in social relations. Methods: Fifty-six partner caregivers completed a postal survey that included measures of HRQL (SF-36), caregiver role (negative and positive aspects), relationship satisfaction, reciprocity and balance. Data were also collected on the care recipients' quality of life (Stroke Specific Quality of Life scale). Results: Compared to a normative sample, caregivers' HRQL was lower for all SF-36 domains. Care recipient and caregiver age, care recipient quality of life and caregiver role (negative) significantly predicted physical component summary scores on the SF-36, while care recipient quality of life and caregiver role (negative) significantly correlated with mental component summary scores. Relationship satisfaction and intrinsic rewards of caregiving were found to be important predictors of positive aspects of the caregiver role. Caregivers who viewed their relationship as less balanced in terms of give and take had significantly greater caregiver burden than those who viewed their relationship as more equitable. Conclusions:The study highlights the importance of taking a broader approach to examining partner caregiving in the context of stroke, in terms of the caregiving relationship and their influence on the health and well-being of caregivers.

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Changing needs of Chinese family caregivers of stroke survivors

Aim.  To examine the changing needs of Chinese family caregivers before and after stroke survivors’ discharge from hospital.

Background.  Stroke ranks third as the most common cause of death in Hong Kong and is the leading cause of adult disability. Community care has been adopted as the major source of care for older people in Hong Kong and this has impacted on family caregivers.

Design and methods.  This is a descriptive-correlational design using a within-subjects design. The needs of 40 Chinese family caregivers who met the inclusion criteria were assessed before discharge and two weeks later using the Carer Assessment Scale, Cost of Care Index and one open-ended question. Modified Barthel Index measured the functional ability of stroke survivors.

Results.  Family caregivers are able to anticipate most of their needs and to make provision to meet the basic practical needs before discharge. Although needs changed after discharge the four most important needs persisted. These were associated with emotional and psychological problems and financial difficulties. Discharge destinations made no difference to the total scores obtained using the above scales.

Conclusions.  This study provides information about need at a time of transition in an under-researched population of Chinese caregivers. Assessment of need is important with Chinese family carers in order to identify focused interventions in a population, i.e. reluctant to make their needs known to professional services. More research about caregiving problems for Chinese family caregivers at the transition from hospital to community is required.

Relevance to clinical practice.  Ongoing need assessment by nurses who are in regular contact with caregivers in hospital and community will enable appropriate interventions such as providing education and emotional support both before and after discharge to be offered to Chinese communities.

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The experience of partners of young stroke survivors

Purpose. Stroke is a health crisis that can prompt a re-organisation of lives and impact on family caregivers. This study extends existing findings by investigating the experiences of partners of young stroke survivors (under 60 years old) two to seven years post-stroke. Method. Semi-structured interviews with seven partners were analysed using interpretative phenomenological analysis. Results. Two super-ordinate themes emerged, 'Adjustment' and 'Coping'. The first consists of two subordinate themes; 'Changed lives' describes the way in which the impact of the stroke was played out in many areas of the partners lives, whereas 'Enduring effects on the self' highlights the psychological consequences of these changes. 'Coping' refers to the ways in which partners adapt to life post-stroke. Conclusions. The study extends knowledge by demonstrating the enduring effects of caring on domestic tasks, relationship with survivor, family roles, employment and social life. Trauma from the stroke event and its immediate aftermath persisted over years. Caring impacted on the partners' sense of self and identity, and positive as well as negative effects were noted. Coping was primarily problem-focussed and previous experiences, social comparison and social support were important. Implications for community support services are discussed.

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Coping and caring: support for family caregivers of stroke survivors

Aims and objectives.  This study examines the physical and emotional burden experienced by caregivers of stroke survivors, compared with caregivers of patients having neurological diseases.

Background.  Stroke survivors have residual neurological impairment, which requires long-term support and care. Anxiety, depression and poor physical health are common sequelae among family caregivers of stroke survivors. There is a reasonably consistent association between patients’ levels of disability and emotional state and the emotional distress of their caregivers.

Design.  A convenience sample of 47 families was recruited: of the 47 families, 23 had a member who suffered from stroke and 24 had a member with neurological disease.

Method.  Two interviews were conducted at three and six months after the occurrence of the index stroke or neurological disease.

Results.  When the two groups of caregivers were compared for anxiety, depression and physical health status after care giving, the caregivers of stroke patients demonstrated higher levels of anxiety and depression than their counterparts in the neurological disease group (p < 0·001). However, there was no significant difference in physical health status between the two groups. Educational attainment, patient group and physical and cognitive impairment of the patients were the predictors of anxiety and the depressive status of the caregivers, while their age and level of depression contributed significantly to their physical health status.

Conclusion.  The physical and emotional well-being of two groups of family caregivers in a neurosurgical unit were compared in the caring context. The caregivers of stroke survivors are at a greater risk of developing poor physical and emotional health than the caregivers of patients having neurological diseases.

Relevance to clinical practice.  The results illustrated that enhanced discharge planning and nurse follow-up sessions are considered essential in maintaining the well-being of the stroke caregivers and bridging the gap between the hospital and the community.

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Psychosocial interventions for carers of survivors of stroke: A systematic review of interventions based on psychological principles and theoretical frameworks

Purpose. Most stroke survivors are cared for at home by informal carers, usually their partners or children. The chronic burden of meeting these care needs can have a significant impact on the psychological well-being of the carer. The aim of this review is to analyse interventions that target psychosocial functioning in carers of stroke survivors to understand how such interventions can reduce the burden of caring. Method. Seven studies that reported on randomized controlled trials of psychosocial interventions for informal adult carers of a survivor of stroke, which reported validated measures of psychological health outcome and met a satisfactory rating of quality were included in this systematic review. Results. A forest plot of two studies that used education and counselling as the intervention for patients and spouses indicate a more favourable outcome for the intervention on the global family functioning scale. The Clarke, Rubenach, and Winsor (2003) study showed that patients were more likely to benefit from an intervention consisting of counselling and education than spouses.

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Problem-solving counselling for caregivers of stroke survivors - An analysis of the addressed topics

Problem-solving therapies for family caregivers have been described for different dyads and care recipients with various chronic conditions. Only little attention is directed to the specific topics worked on with informal caregivers. This study focuses on the intensive intervention period of 3 months of an individualized mainly telephone-based problem-solving training for informal carers of stroke survivors (TIPS-Study). We present data of 47 strained caregivers who cared for their spouses and partners (n=42) or (grand-)parents (n=5). Results show that effective changes in burden can be achieved with only few contacts concentrating on problems that can be controlled by problem-focused coping mechanisms. Problems that require emotion-focused coping were processed rarely. Future perspectives of the approach are discussed.

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Listening to carers' views on stroke services

Anne Marie Tunney and Assumpta Ryan discuss a study that used the experiences of women caring for survivors to assist service redesign

Aim  The aim of this study was to explore how members of a stroke carers’ support group perceived that services for stroke patients and their carers could be improved.

Method A qualitative, experience-based design approach was used to explore the views of ten carers of stroke survivors. Experience questionnaires and a listening lab were used for data collection. Data analysis was carried out using thematic content analysis of the questionnaire and audiotaped transcripts.

Findings Common themes identified included carer loneliness, lack of information, effect of stroke on relationships, carer emotions, loss of privacy and need for ongoing support.

Conclusion There are many advantages to be gained for users and organisations from user involvement in service redesign and delivery

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An exploration looking at the impact of domiciliary and day hospital delivery of stroke rehabilitation on informal carers

Objectives: To explore the impact of two methods of post-hospital stroke rehabilitation on both carers' perceptions of the health services offered and their quality of life.

Setting: East Dorset Health Authority.

Subjects: Forty-six informal carers were recruited from a sample of 106, initially identified from stroke patients participating in a larger randomized controlled trial.

Design: Qualitative methods.

Methods: Semi-structured interviews were used at baseline and six months to explore carers' perception of a good therapy, the advantages and disadvantages of the different services and their fulfilment with the services. In-depth thematic analysis was carried out to explore the impact of the two different methods of service delivery on carers' quality of life.

Results: Day hospitals provided carers with respite opportunities, whilst domiciliary stroke teams provided carers with better educational opportunities to be involved in therapy. No qualitative difference was found in the impact that the different services had on carers' quality of life, which were influenced by factors such as the degree of disruption that caring had on their lives, the loss of a shared life and the availability of social support. Ultimately, carers saw the services as providing benefit for survivors and not themselves.

Conclusions: Domiciliary stroke teams provided informal stroke carers with skills that could help improve postdischarge stroke rehabilitation amongst stroke survivors. Informal carers also benefited from the respite elements of day hospital. A mixed model using both domiciliary care and day hospital care, could provide carers with the benefits of education, convenience and respite.

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Towards an understanding of the lives of families affected by stroke: a qualitative study of home carers

Aims and objectives.  To explore the personal experiences of carers of stroke survivors and to elicit their views and opinions of what constitute the major issues and concerns of people in their situation.

Background.  The unexpected nature of stroke can propel people into the role of carer with little or no warning. Some carers of stroke survivors suffer from considerable stress and a range of psychological and physical disorders.

Design.  A small-scale qualitative study of experienced carers of stroke survivors.

Method.  Ten carers with experience of caring for a stroke survivor were recruited to the study through community stroke staff. Data were collected using semi-structured interviews and a focus group.

Results.  The women’s main concerns were focused around the need for information and support, including the need for some preparation and training in the necessary skills of caring.

Conclusions.  To understand fully the lives that carers lead, it is necessary to explore what carers want to do, and expect to do, for the care-recipient. There is a need to develop an understanding of factors that appear to be protective against stress, to identify how they can be enhanced and to develop ways to minimise the impact of those factors that have a detrimental impact on the well-being of carers and on those for whom they care.

Relevance to clinical practice.  Health professionals need to ensure that appropriate information is clearly provided for carers. Communication between health professionals to ensure the ‘joined up’ provision of therapeutic services is another area for continual development. Carers expressed the wish to be better prepared to take on the caring role in the home and would have welcomed some training in this area.

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Qualitative focus group study investigating experiences of accessing and engaging with social care services: perspectives of carers from diverse ethnic groups caring for stroke survivors

Objectives Informal carers, often family members, play a vital role in supporting stroke survivors with post-stroke disability. As populations age, numbers of carers overall and those from minority ethnic groups in particular, are rising. Carers from all ethnic groups, but especially those from black and minority ethnic groups frequently fail to access support services, making understanding their experiences important. The study therefore explored the experiences of carers of stroke survivors aged 45+ years from 5 ethnic groups in accessing and receiving social care services after hospital discharge.

Design This qualitative study used 7 recorded focus groups with informal carers of stroke survivors. Data were analysed thematically focusing on similarities and differences between ethnic groups.

Setting Carers were recruited from voluntary sector organisations supporting carers, stroke survivors and black and minority ethnic groups in the UK.

Participants 41 carers from 5 ethnic groups (Asian Indian, Asian Pakistani, black African, black Caribbean, white British) participated in the focus groups.

Results Several interconnected themes were identified including: the service gap between hospital discharge and home; carers as the best person to care and cultural aspects of caring and using services. Many themes were common to all the included ethnic groups but some related to specific groups.

Conclusions Across ethnic groups there were many similarities in the experiences of people caring for stroke survivors with complex, long-term care needs. Accessing services demands effort and persistence on carers’ part. If carers believe services are unsatisfactory or that they, rather than formal services, should be providing support for stroke survivors, they are unlikely to persist in their efforts. Cultural and language differences add to the challenges black and minority ethnic group carers face.

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Formal support of stroke survivors and their informal carers in the community: a cohort study

This cohort study, aims to explore formal care provision to stroke survivors and their informal carers in the community in the UK. An initial cohort of 105 cohabitant carers of first-time stroke patients was recruited while the stroke patient was in hospital. Structured face-to-face interviews were carried out with carers prior to discharge of the stroke patient home, at 6 weeks after discharge, and 15 months after stroke. Questionnaires included measures of psychological health (CIS-R), physical health (self-rated health), social well-being (relationship quality and Sarason's social support questionnaire), handicap of the stroke survivor (Oxford Handicap Scale) and formal community support (amount of formal support and carer satisfaction). Multiple services were involved with most survivor–carer pairs (mean 5.4; range 2–9; SD = 1.7), and 74% of carers were satisfied with formal support provided. Number of services decreased with time (5.5 versus 4.1, t = 4.201, d.f. = 52, P < 0.001, 95% confidence interval: 0.71–2.01) but not time allocated. Using stepwise linear regression, service provision early after discharge was predicted by: level of handicap, recruitment centre, carer self-rated health, number of informal supporters and other care commitments. Satisfaction was predicted by quality of informal support and activity restriction. Fifteen months after stroke, predictors of formal care were: level of handicap, quality of informal support and previous caring experience. Predictors of satisfaction were: quality of the relationship between the stroke survivor and carer, age and mood. Quality of services was good, but carers lacked information, had insufficient help and were not consulted enough. Carer distress is common, yet not currently a factor influencing support provision. Formal care provided adapts with time reflecting the importance of quality of support from friends and family rather than quantity of informal supporters. These factors should be taken into consideration when planning and providing formal support for stroke survivors and their carers.

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System induced setbacks in stroke recovery

This study reports research on the experiences of stroke survivors and their informal carers who are receiving stroke services in the community. As part of a qualitative evaluation of a Pilot Community Stroke Service in Nottingham, England, interviews were conducted with stroke survivors, their families and friends, alongside interviews with the managers and professionals providing the service. The findings from the interview data were compared across cases and with findings from analyses of documentary data such as clients’ individual plans, and participant observational data, such as those of team meetings. Data analysis revealed that of the 57 survivors, 13 had suffered setbacks that were a direct consequence of their interactions with health and social care services and were system induced. This paper introduces and discusses the concept of the system induced setback by exploring the experiences of these 13 survivors. Implications for understanding the interplay of service provision and disease process are highlighted.

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