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.     

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.     

Problems and associated feelings experienced by family caregivers of stroke survivors the second and third month postdischarge

This study identified problems and associated feelings experienced by family caregivers of stroke survivors during the second and third month after discharge from a rehabilitation facility to home. Safety was the most frequent problem identified by family caregivers. Other problems were managing activities of daily living (ADLs) and cognitive, behavioral, and emotional changes by stroke survivors. About half of caregivers expressed more positive feelings toward managing these problems by week 8 and the majority expressed these feelings by week 12.     

Physical fitness training after stroke, time to implement what we know: more research is needed

Stroke survivors experience marked reduction in physical activity and fitness. Regular physical fitness training, started early poststroke, could help recovery in the long term and is recommended in many clinical guidelines. However, implementation of programs is hampered by our current lack of knowledge about what interventions are most effective and how best to support stroke survivors to exercise. In the United Kingdom and Australia, there are educational programs for exercise professionals to enable them to safely and effectively deliver exercise to stroke survivors; and in the United Kingdom, community exercise training programs are being developed to follow-on from usual rehabilitation. As with many areas of life after stroke, further research is still needed. We need to know more about the effect of exercise training on common poststroke problems such as fatigue, depression and falls. Importantly, we need to understand the perceived barriers and motivators to exercise after stroke, and how to enhance adherence to the exercise programs that are in current development. However, these knowledge gaps should not prevent us from implementing what we know; and we would urge health professionals to work with exercise professionals to develop pathways into exercise for stroke survivors.     

Stroke Inpatient Rehabilitation Team Conferences: Leadership and Structure Improve Patient Outcomes

Consensus on how rehabilitation teamwork and services are optimally coordinated continues to be a work in progress. One area of recent research has been inpatient-rehabilitation team conferences in stroke. The prevalence of Americans living with stroke is expected to gradually increase as the U.S. population ages, as will the related direct and indirect costs. Effective interdisciplinary team conferences during acute-stroke inpatient-rehabilitation are key to managing long-term costs while improving functional outcomes. Effective team conferences help to identify patients at risk for medical complications and institutionalization and help to determine interventions that will focus on patients’ medical, physical, cognitive, emotional, and social barriers to recovery and barriers to a community/home disposition. This scoping review paper identifies and analyzes literature on theory and structure of effective teams with the focus on stroke interdisciplinary rehabilitation team conferences and offers suggestions for improvement. Potential flaws of commonly used team conference formats are described. Studies are outlined showing associations between stroke patient outcomes and better care coordination and leadership in medical teamwork; and 2 examples of successful interdisciplinary team conference models used in stroke inpatient-rehabilitation are provided that support a case for a proactive, conscious structure to team conferences. Given the complexity of many stroke patients’ clinical care, greater attention to team functioning, and especially team conference leadership and structure, may be a promising area of focus to improve the quality of health care services for people with stroke.     

The longitudinal and dyadic effects of mutuality on perceived stress for stroke survivors and their spousal caregivers

Objective: Functional impairment resulting from a stroke frequently requires the care of a family caregiver, often the spouse. This change in the relationship can be stressful for the couple. Thus, this study examined the longitudinal, dyadic relationship between caregivers’ and stroke survivors’ mutuality and caregivers’ and stroke survivors’ perceived stress.

Method: This secondary data analysis of 159 stroke survivors and their spousal caregivers utilized a cross-lagged, mixed models analysis with the actor–partner interdependence model to examine the dyadic relationship between mutuality and perceived stress over the first year post-discharge from inpatient rehabilitation.

Results: Caregivers’ mutuality showed an actor effect (β?=??3.82, p?β?=?0.13, p?=?0.047). Caregivers’ perceived stress did not show a partner effect and did not significantly affect stroke survivors’ perceived stress.

Conclusion: These findings highlight the interpersonal nature of stress in the context of caregiving for a spouse. Caregivers are especially influenced by perceived stress in the spousal relationship. Couples should be encouraged to focus on positive aspects of the caregiving relationship to mitigate stress.     

Do family-oriented interventions reduce poststroke depression? A systematic review and recommendations for practice

Introduction:Up to half of all stroke survivors become depressed. Poststroke depression (PSD) negatively impacts on quality of life and rehabilitation outcomes and increases risk of mortality. Depression is also common in carers, leading to poorer outcomes in survivors. Few stroke patients receive adequate care to support prevention and management of PSD. We aimed to systematically review the evidence regarding the effectiveness of family-oriented interventions to prevent and manage depression after stroke and identify components of effective interventions.

Methods:A systematic review was conducted, adhering to Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. Eight databases were searched, and relevant journals and reference lists were hand searched. Abstracts were screened for relevance and two authors independently assessed selected full texts against inclusion criteria. Studies were included if they (1) engaged stroke patients and their informal/family caregivers; (2) measured changes in depression due to an intervention; and (3) were available in English.

Results:Twenty-five of 2741 identified citations met the inclusion criteria. Five studies demonstrated significant reductions in depression. Commonalities across effective studies included the delivery of interventions that were structured and multicomponent, actively engaged patients and families, coordinated care, and were initiated soon after a stroke.

Conclusion:Family-oriented stroke rehabilitation may reduce depression in stroke survivors and their family caregivers. More research is required to clarify the effectiveness, feasibility, and acceptability of working with families and patients living with or who may be at risk of PSD.     

Organizing regional stroke systems of care

PURPOSE OF REVIEW: Stroke is a major public health problem in the US and other developed countries. Stroke units reduce morbidity and mortality, and the efficacy of thrombolytic therapy propelled the development and maturation of a stroke systems of care delivery model. This model addresses the key domains in the chain of stroke survival and recovery, including primordial and primary prevention; community education; notification and response of emergency medical services; acute stroke treatment; subacute stroke treatment and secondary prevention; rehabilitation; and continuous quality improvement activities within each domain and across the system itself. RECENT FINDINGS: To improve care delivery to all, systems must be implemented that link these domains together, and successful examples of these activities are reviewed in detail. SUMMARY: Harmonization of efforts by the major healthcare organizations to collect data on hospital-based stroke care and improve care will lead to broader implementation of these programs and better patient outcomes. Health policy changes are needed at the state, regional and federal level to increase funding for stroke education and provider reimbursement, improve provider capabilities and address shortages of acute stroke expertise nationwide. Telemedicine and air medical transport play a key role in creating networks of stroke care that link together hospitals of different capabilities.     

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.     

The domain management model: a tool to help organize care of stroke survivors in skilled nursing facilities

More rehabilitative care takes place in nursing homes than in any other setting. Skilled nursing facilities (SNFs) face increasing challenges in delivering stroke rehabilitation care. The Domain Management Model (DMM) organizes care of stroke survivors by identifying four critical domains that include all problems patients and families may face. Problems identified through the Minimum Data Set and Resident Assessment Protocols can be organized by the domains as well. In the SNF setting, the DMM can help organize rehabilitation care by assisting in the identification of all relevant clinical problems and by serving as a structured format for team meetings, problem management, and discharge summaries.     

不同性别脑卒中照顾者照顾负担分析

目的了解不同性别脑卒中照顾者关于照顾负担的感受状况,为建立合理的长期照护体系提供科学依据。方法采取便利抽样法,抽取212例脑卒中患者的主要照顾者进行面对面问卷调查。结果男性和女性照顾者在照顾负担平均得分分别为(38.49±5.163)分和(42.46±7.409)分,均处于中等水平,在"时间依赖性负担""发展受限性负担""身体性负担""社交性负担""情感性负担"方面差异均有统计学意义(P0.05)。多元线性回归分析显示,文化程度、照顾时间是影响男性照顾者负担得分的主要因素;文化程度、照顾时间和婚姻状态是影响女性照顾者负担得分的主要因素。结论应重视加强对教育程度低、照顾时间长的中老年人群和已婚女性的支持力度,倡导男女分工协作,促进患者早日康复。     

成都市社区卒中家庭照料者的康复知识与需求现状调查

目的 了解社区卒中家庭照料者的康复知识与康复需求状况。方法 对200例卒中患者家庭照料者的基本情况,对康复基本知识的掌握情况和影响因素及康复需求进行问卷调查。结果 （1）成都社区卒中家庭照料者女性占59%、中年和老年人居多（均为44%）,主要是配偶照料（57.5%）;（2）大多数卒中患者照料者的康复知识缺乏,其康复知识的得分与文化程度、年龄有相关性（P分别为<0.001和0.007）;（3）81%的家庭照料者对社区康复有需求。结论 需要加强宣传,提高社区卒中患者及其家属的康复知识知晓率,积极推广社区康复以满足其需求。     

Perceptions of the process of care among caregivers and care recipients in dementia care networks

The Dementia Care Networks Study investigated 4 community-based, not-for-profit dementia care networks in Ontario, Canada. Investigators examined whether sociodemographic and health characteristics, type of support network, and amount of service use among care recipients and caregivers (n = 267 dyads) were associated with experiences with care processes. The process-of-care constructs were: family physicians' awareness of services; experiences with health care workers, and assessment and placement activities. The findings highlighted that family physicians' understanding of dementia and their ability to work with the dyad to become aware of and accept services, was an important component in the dyad's satisfaction. If caregivers received home support and the care recipients received emotional support from their social support network, they were more likely to be satisfied with their experiences with health care workers. In summary, increased awareness and provision of services were associated with more positive perceptions of network effectiveness.     

Psychological stress and coping: framework for poststroke psychosocial care

The ability to deal with and manage a chronic condition such as stroke requires a learning process embedded in personal experience that is often emotionally taxing as well as physically fatiguing. Stroke survivors typically need help in balancing demands and resources and in preventing or effectively coping with stress emotions to conserve energy. The major constructs outlined in this article provide a framework for psychosocial care to promote the experience of wellness in stroke survivors.     

Expanding poststroke depression research: movement toward a dyadic perspective

Research on depression following stroke has traditionally been oriented toward understanding the experiences of individual survivors or their spousal caregivers outside of the context of their committed relationship. Moving toward a dyadic orientation to the problem of poststroke depression, in which the stroke survivor-spouse dyad is viewed as the primary unit of analysis, will open the door to new lines of inquiry and may eventually lead to more effective treatments for survivors and their spouses. The first half of this article discusses the rationale for moving poststroke depression research toward a more dyadic perspective and highlights current efforts in this area. The second half of this article discusses some methodological challenges associated with dyadic data and the practical benefits of one statistical methodology, multilevel modeling, for examining depression in survivor-stroke dyads.     

Psychological Burden in Stroke Survivors and Caregivers Dyads at the Rehabilitation Center of Kinshasa (Democratic Republic of Congo): A Cross-Sectional Study

IntroductionStroke is a major cause of burden which can lead to anxiety and depressive disorders in stroke patients and their caregivers. This study aimed to assess the burden of depression and anxiety and covariates as well as its association with functional disability level among stroke survivors and caregivers dyads.MethodsThis cross-sectional study assessed for anxiety and depressive symptoms, and perceived burden among survivors of stroke and their caregivers in the rehabilitation center of Kinshasa; using the Hospital Anxiety and Depression Scale to identify participants with anxiety and depression; the Zarit Burden Inventory to assess the burden of depression and anxiety; and the modified Rankin scale used to assess functional outcome or level of disability.ResultsEight in ten caregivers of stroke survivors perceived the burden, which took more expression of depression than anxiety, whereas three in ten stroke survivors had a burden expressed by symptoms consistent with depressive and anxiety disorders. Being married increases the risk of perceiving the burden among stroke survivors. We found a positive association between high level of burden and depression and anxiety among caretakers of stroke survivors. Moreover, our findings did not reveal a statistical association between the burden and level of dependence evaluated based on the severity of disability.ConclusionsThe psychological burden is higher among caregivers than stroke survivors. Specialized programs targeted the psychological distress, its association with anxiety and depressive symptoms; and the functional disability level of stroke survivors should be integrated into the rehabilitation center of patients with disabled illnesses. Our findings warrant further studies to test the impact of reducing psychological burden on functional disability.     

Burden of informal caregiving for stroke patients. Identification of caregivers at risk of adverse health effects

BACKGROUND: We assessed the objective and subjective burden of caregiving for stroke patients and investigated which characteristics of the patient, the informal caregiver and the objective burden contribute most to subjective burden and to the condition of feeling substantially burdened. METHODS: We studied a sample of 151 stroke survivors and their primary informal caregivers. We collected data through patient and caregiver interviews 6 months after stroke. RESULTS: Both the level of subjective burden and the condition of feeling substantially burdened were associated with both caregiver's and patient's health-related quality of life, patient's age, and the number of caregiving tasks performed. CONCLUSIONS: These conditions can be used in clinical practice to identify potentially vulnerable caregivers in need of support and at risk of adverse health effects. Monitoring stroke survivors as well as their family caregivers at discharge may help to prevent or alleviate caregiver burden.     

Analysis of problem types and difficulty among older stroke caregivers

Stroke onset causes disruption of family roles as caregiving tasks are assumed. The current study presents a qualitative and quantitative analysis of the problems of 123 older, spousal stroke caregivers. Problems were coded into 14 categories; frequencies of occurrence and difficulty were also analyzed. Differences in problem difficulties were examined by race, gender, years caregiving, and care receiver's functional level, depression, burden, and loneliness. Noncompliance was the least frequent but most difficult problem type. Lack of social involvement was the most frequent problem type and the most difficult for the more depressed, burdened, and lonely caregivers. This increase in problem specificity and detail of analysis has provided direction for clinical application in counseling the spouses of stroke survivors on how to manage the stress of their new life role.     

Qualitative analysis of a nurse's responses to stroke caregivers on a web-based supportive intervention

Abstract

Background:

Approximately 800?000 people experience a stroke every year; most are cared for by unpaid family members in home settings. Web-based interventions provide 24/7 access to education/support services and have been explored in the literature with family caregivers dealing with chronic conditions. Current research into nurses' web-based interactions with caregivers in these interventions is lacking.

Objective:

The aim of this qualitative secondary data analysis was to examine a nurse specialist's responses and advice that she gave in a web-based supportive intervention for stroke family caregivers used in a randomized controlled trial for 1 year.

Methods:

Using a qualitative research design, caregivers were recruited from rehabilitation facilities in Ohio and Michigan (n?=?36). They accessed the intervention's email forum and discussion group facilitated by the nurse. These email message data were examined using rigorous content analysis.

Results:

The caregivers were primarily white women caring for a spouse, with an average age of 54 years. From the 2148 email messages between the nurse and caregivers, five themes emerged and were drawn to Friedemann's Framework. These themes included: getting to know the situation (Friedemann's coherence and individuation), validating emotions (individuation), promoting self-care (individuation), assisting in role adaptation (system maintenance and individuation), and providing healthcare information (system maintenance and individuation).

Conclusions:

These caregivers of stroke survivors were asking for advice, seeking support, and looking for information from an advanced practice nurse. Nurses, and others, in supportive roles can use these findings to promote informed care and directed interventions for caregivers dealing with stroke and its outcomes.