Needs of family caregivers of stroke patients: a longitudinal study of caregivers' perspectives (original) (raw)
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Family Needs of Caregivers of Stroke Survivors
2016
Background: After a stroke, patient often suffers varying degree of disability that requires immediate hospital care and extended home care. Therefore, caregivers assume multiple roles to fulfil the needs of survivors at home. The current study aim to explore various needs felt by the caregivers of stroke survivors at home. Methods: A cross sectional community-based survey was carried out. Hundred participants were enrolled purposively. Modified family needs questionnaire (FNQ) was used to identify the needs of the caregivers. Descriptive statistics was used to analyze the results. Results: ‘Health information’, ‘Professional support’ and ‘Involvement of care’ sub scales were the most important needs areas of the caregivers. The most important needs were within ‘Health information’, ‘Instrumental support’ and ‘Professional support’ sub scale and least important needs fell within ‘Emotional support’, and ‘Community support’ areas in the caregivers. Conclusions: Assessment of Family needs amongst the caregivers of individuals with stroke is important for all health care professionals in understanding problems from the caregivers’ perspective. Intervention should be designed and implemented for successful home rehabilitation of stroke survivors.
Needs of family caregivers of stroke patients
2015
Conclusion: Family caregivers expected to obtain assistance and related care information from professionals during the course of the disease. Read this original research and sign up to receive Patient Preference and Adherence journal here: http://www.dovepress.com/articles.php?article\_id=20918
Stress in Caregivers of Stroke Patients During Rehabilitation: An Observational Study
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.
Coping and caring: support for family caregivers of stroke survivors
Journal of Clinical Nursing, 2007
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 < 0AE001). 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.
Patient Education and Counseling, 2008
Objective: Discuss family caregivers of stroke survivors' changing needs for education and support across the care continuum. Methods: Conceptual review. Results: Stroke is a serious, sudden onset illness requiring care across the care continuum. The focus of care, the individuals primarily responsible for providing that care, and patients' self-care abilities change across care environments. Often family members who provide support also experience changes in their caregiving role. To date, however, interventions for family caregivers have not explicitly considered their changing support needs.
The Crisis of Stroke: Experiences of Patients and Their Family Caregivers
Topics in Stroke Rehabilitation, 2011
Purpose-Approximately 4.8 million stroke survivors are living in the community with some level of disability requiring the assistance of family caregivers. Stroke family caregivers are often unprepared for the demands required of them. The purpose of this grounded theory study was to explore the needs of stroke patients and their family caregivers as they transitioned through the stroke care continuum from acute care to inpatient rehabilitation to home. Methods-Thirty-eight participants, 19 recovering stroke patients (11 male, 8 female), 15 primary family caregivers (14 spouses, 1 mother), and 4 adult children were interviewed during their stay at a rehabilitation facility and within 6 months of discharge. Interview questions were loosely structured and focused on the stroke experience and how patients and caregivers were managing postdischarge. Data were analyzed using dimensional and comparative analysis. Results-Findings were organized in a conceptual framework illustrating the trajectory of the crisis of stroke. Stroke survivors and their caregivers faced enormous challenges as they moved through 3 phases of the trajectory: the stroke crisis, expectations for recovery, and the crisis of discharge. Findings from this study suggest that as caregivers move through the phases of the trajectory, they do not have a good understanding of the role to which they are committing, and they are often underprepared to take on even the basic tasks to meet the patients' needs on discharge. Conclusion-Stroke survivors and their caregivers do not have adequate time to deal with the shock and crisis of the stroke event, let alone the crisis of discharge and all of the new responsibilities with which they must deal. Keywords caregiving; discharge planning; qualitative research; stroke Each year, nearly 800,000 people experience a new or recurrent stroke event. 1 Approximately 4.8 million stroke survivors are living in the community with some level of disability, and 50% need assistance with activities of daily living (ADLs) or instrumental activities of daily living (IADLs). 2 As diagnosis and interventions for persons with stroke improve, the number of stroke survivors and, in turn, the number of familial caregivers will increase. Although stroke survivors often have significant functional limitations, the implementation of prospective payment systems for inpatient rehabilitation services in the United States has resulted in significant reductions in lengths of stay for stroke rehabilitation 3,4 by as much as 8 days. 5 These reductions are not new. In the 1980s, a study of more than 3,000 stroke patients showed that the length of acute care hospital stays reduced from 17.5 to 6.4 days. 6 Patients with stroke thus continue to be discharged home "quicker and sicker," resulting in increased stress on family caregivers who are typically
Experiences of Strokes’ Caregivers: A Qualitative Study
Jundishapur Journal of Chronic Disease Care, 2019
Background: Patients with stroke are dependent on their family to relieve their physical and emotional needs after discharge from the hospital. The family plays an important role in caring for them, which is a stressful task for the caregivers. Objectives: This study aimed at investigating the experiences of caregivers of patients with stroke. Methods: This is a qualitative study (descriptive phenomenology), in which the participants included seven caregivers of stroke patients. Data were collected through semi-structured interviews. Data analysis was performed based on Colaizzi. Results: The results in the study were summarized in three main categories: anxiety (tension and stress, concern about economic future), care consequences (fatigue, reduced family interactions), and neglected needs (psychological needs, educational needs). Conclusions: According to the purpose of the study and its implications, it is concluded that nurses and physicians should pay more attention to the needs and concerns of patients and their caregivers and try to resolve them with regard to the consequences of the disease.
Problems and Benefits Reported by Stroke Family Caregivers
Stroke, 2009
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...
Evolution of the caregiving experience in the initial 2 years following stroke
Research in Nursing & Health, 2003
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.
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