Correlates of health-related quality of life in African American and Caucasian stroke caregivers (original) (raw)
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Background and Purpose— Stroke symptoms can be very stressful for family caregivers, but most knowledge about the prevalence and stressfulness of stroke-related patient problems is derived from convenience samples. In addition, little is known about perceived benefits of the stroke caregiving experience. The purpose of this study was to determine the prevalence and stressfulness of stroke-related problems, and perceived benefits of caregiving, as reported by an epidemiologically derived sample of caregivers of stroke survivors. Methods— Stroke survivors (N=75) from a prospective epidemiological study of stroke, the REasons for Geographic and Racial Differences in Stroke (REGARDS) study, and their family caregivers were followed. Caregivers were given a comprehensive telephone interview 8 to 12 months after the stroke, using measures of stroke patient problems, caregiver appraisals of the stressfulness of these problems, and perceived benefits of caregiving. Results— Caregivers rated...
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Three-year changes in well-being were studied among family caregivers of an epidemiologically derived sample of stroke survivors from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study and compared to matched noncaregivers. Family caregivers of REGARDS participants who experienced a stroke event completed telephone interviews assessing depressive symptoms, mental and physical health quality of life (QOL), life satisfaction, and leisure satisfaction at approximately 9, 18, 27, and 36 months after the stroke (n = 235). For each stroke caregiver, a family member of a stroke-free REGARDS participant was enrolled as a matched noncaregiving control (n = 235) and completed similar interviews. Multilevel longitudinal models found that caregivers showed poorer well-being at 9 months poststroke than controls on all measures except physical health QOL. Significant differences were sustained for 22 months after the stroke event for depressive symptoms, 31 months for men...
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Relationships between stroke survivor and family caregiver factors and the caregiver's health-related quality of life (HRQL) and overall quality of life (QoL) were examined in 97 dyads during the first and second years after stroke. Compared to age-and sex-matched population norms, caregivers scored significantly lower on the mental subscales of HRQL, and differences were greater for women than for men. Caregiver characteristics (older age, less burden, and fewer physical symptoms) were associated with better HRQL (mental summary scale) in the first year, with similar findings in the second year. Moderate stroke survivor physical impairment and caregiver characteristics (younger age and better HRQL) were associated with better QoL in the first year. During the second year poorer caregiver physical and mental health and caring for a stroke survivor with communication difficulties were associated with diminished QoL.
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Cureus, 2023
Introduction: Stroke causes a high burden of death and disability all over the world. The majority of stroke survivors continue to have difficulties, and their families must shoulder a considerable portion of the expenditures of ongoing rehabilitation and long-term care. In India, stroke rehabilitation is still underachieved due to various reasons leading to delay or incomplete recovery of the patients thus adding up more burden on the caregivers. Thus, studying the caregiver burden of stroke rehabilitation will help policymakers tackle this issue faced by our lower economically challenged citizens. Objectives: The objective is to measure the perceived burden on caregivers during stroke rehabilitation. Methods and materials: The observational study was conducted by interviewing the stroke survivors' caregivers and visiting the physiotherapy OPD using the caregiver burden scale/questionnaire. Results: The study had 76 caregivers, 51.32% were women and 48.68% were men. The average age for caregivers was 42 years and 55 years for patients. The average duration of giving care was six months. The perceived caregiver burden score was low (mean-19.61) suggesting that not all assistance is associated with stress. The correlation of each burden measure with Modified Rankin Scale for disability is significantly correlated (r=0.7, P<0.0001). Further investigation revealed that caregivers had considerably higher levels of stress when the patient needed to exercise, walk or use the restroom. A low yearly income, a higher secondary education, and a small number of family members were shown to be connected with individuals who scored the highest on stress. Conclusion: Based on this study, we conclude that people with low income residing in nuclear families require more support for caregiving during rehabilitation. We recommend that health and welfare policy measures be developed to lessen caregiver burden in order to improve caregivers' post-stroke experiences.
Caring for stroke survivors: baseline and 1-year determinants of caregiver burden
International Journal of Stroke, 2009
Background Caregiver burden following stroke can have significant adverse health consequences for caregivers and threatens the recovery and successful rehabilitation of patients. Our objective was to identify patient factors that contribute to higher levels of caregiver burden. Methods We prospectively studied patients admitted to our stroke unit over a 2-year period (2001-2002). Data were collected at baseline and at 1 year. Caregiver burden was measured at 1 year using the Relatives Stress Scale (completed by 155 caregivers) and the Bakas Caregiver Outcomes Scale (143 caregivers). Explanatory patient factors at baseline included sociodemographic status, stroke severity, stroke sub-type, functional disability (Barthel Index), functional handicap (Oxford Handicap Scale and Modified Rankin Scale), and cognitive status (orientation, clock drawing). At 1 year, mental health and health-related quality of life were assessed using the Fatigue Impact Scale, Geriatric Depression Scale, Glob...
Correlates of well-being among caregivers of long-term community-dwelling stroke survivors
International journal of rehabilitation research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue internationale de recherches de readaptation, 2016
Although caregiving for stroke survivors is usually long-term, most studies on caregivers have generally involved only the first year following the event. We assessed and compared the long-term level of well-being measures among stroke survivors and their caregivers at more than 1 year following the stroke event and examined the associations between well-being, survivors' characteristics, and caregiver burden. We interviewed a convenience sample of 51 community-dwelling stroke survivors, at least 1 year after the last stroke event, and their primary caregivers. Disability of survivors was assessed using the Barthel index and the modified Rankin Scale; health-related quality of life by the SF-36 questionnaire; and depression and anxiety using the Hospital Anxiety Depression Scale. Caregivers filled the SF-36 questionnaire, Hospital Anxiety Depression Scale questionnaire, and the Zarit Burden Interview, which assesses caregiver burden. Caregivers reported low levels of health-rela...
Toward a model of quality of life for family caregivers of stroke survivors
Quality of Life Research, 2000
The important role of family caregivers in maintaining their disabled and elderly members in the community is becoming increasingly recognized. Caregiver research, for the most part, has explored burden and emotional distress as outcomes of the caregiving experience. Although there is a growing consensus among health-care researchers concerning the importance of quality of life (QoL) as an outcome, there is little research examining QoL of family caregivers. The purpose of this paper, therefore, was to construct a conceptual framework from which to study the QoL of family caregivers of stroke survivors. Findings from a review of studies addressing the QoL of these caregivers guided the development of the model. The components of the model include the caregiving situation, characteristics of the caregiver, and environmental factors, and their proposed relationships with QoL. This model provides a framework for investigating how the caregiving experience impacts on the caregiver's QoL.
Rehabilitation Psychology, 2009
This study examined (1) causality in the relationship between stroke caregiver mental health and care-recipient functioning, and (2) the prediction from stroke caregiver and care-recipient variables 5 months and 11 months later. Research Method: Questionnaire, interview, and observational data were collected from 124 ethnically diverse stroke caregiver/care-recipient dyads in the homes of care recipients at 1, 6, and 12 months after discharge. Results: The magnitudes of the causal pathways between stroke caregiver mental health and care-recipient functioning were not significantly different. At 1 month after discharge, the best predictors of poor caregiver mental health 11 months later were care-recipient low daily functioning and caregiver low sense of coherence, high burden, and high depression. Conclusions: Caregiver mental health and care-recipient functioning may have reciprocal causal influence on each other, so one of the first steps in stroke rehabilitation may be providing counseling to the primary caregiver. Caregivers with high burden, a low sense of coherence, and a low-functioning care recipient are those most at risk for poor mental health outcomes.
Patient Education and Counseling, 2015
The demographic ageing of societies and decreasing early stroke fatality rates have resulted in an approximately 84% increase in the absolute number of stroke survivors in the past few decades [1]. Nowadays, around 33 million stroke patients live worldwide and a sizable proportion of them suffer from moderate or severe disability [1]. According to recent studies, significant functional limitations are noted in 40-45% of the survivors in the first months after a stroke [2,3] and in around 30% after 5 years [4,5]. These patients need permanent or temporary care and assistance with self-care and activities related to independent living in the home and community [6]. Because the majority of patients return to their own home after discharge from hospital, the help required is most often provided by family members. Providing care may be highly demanding, due to the complex nature of stroke sequalae including physical, emotional, cognitive and behavioural changes, little preparation for caregiving tasks resulting from the suddenness of the illness, shortened length of hospitalisation and insufficient post-discharge support [7,8]. The caregivers may therefore experience adverse effects on their physical and emotional health, social activities, financial situation and spiritual functioning [9]. These consequences are termed ''caregiver burden or strain'' and are considered to be an important outcome of the caregiving process. Many studies have shown that 25-46% of carers perceive a substantial burden during the first 6 months of caregiving [10-14] and that the average level of the burden is constant, or decreases
Needs of family caregivers of stroke patients: a longitudinal study of caregivers' perspectives
Patient preference and adherence, 2015
After a stroke, patients often suffer from varying degrees of disability that require acute inpatient treatment and extended care at home. Therefore, the caregivers assume multiple responsibilities that can result in stress, particularly when their own needs are inadequately addressed during the patient's recovery. This study aimed to explore the changing needs of family caregivers of stroke patients and factors related to the needs in four stages, before the transfer from intensive care unit to neurological unit, before discharge, 2 weeks post-hospitalization, and 3 months post-hospitalization. The design of this study was based on longitudinal research, and the participants were family caregivers of stroke patients. Sixty family caregivers were recruited in this study. Data were collected at four time points by questionnaire. We found that the total number of needs of family caregivers decreased as the illness duration increased and that needs differed significantly between th...