The rehabilitation stage of a stroke survivor's recovery provides an opportunity to prepare family caregivers for the supportive role they will play in the community. The goal of this qualitative study was to learn about family caregivers' experiences and support needs during the rehabilitation phase to inform program development.
We recruited family caregivers within the first 6 months post stroke. Nine caregivers participated in 40- to 60-minute in-depth qualitative interviews where the personal needs of caregivers were illuminated. Data were analyzed using content analysis.
An overriding theme was differences in personal needs between older and younger caregivers. We interviewed five younger caregivers (55 years of age) and four older caregivers (>55 years of age). Younger caregivers identified informational support and training as important parts of their social support whereas older caregivers did not. Younger caregivers were also more likely to complain or criticize the health care system and staff than older caregivers. A common theme among older caregivers was to focus on the importance of keeping a positive outlook throughout the experience.
Caregiver experiences and support needs varied according to age. This suggests that support programs should consider age as a factor when tailoring interventions.
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"This finding is surprising, if taking into account the possibility that younger caregivers have been reported to be faced with more competing demands than older caregivers. Smith, et al (2008), found that family caregivers of stroke survivors reported different experiences and personal needs based on their age, and that younger caregivers were more likely to be unhappy with the health care system than older caregivers (Smith, Gignoac, Richardson, & Cameron, 2008). Younger caregivers may be active in the workforce, and may still have children in the home to care for in addition to the care recipient. "
[Show abstract][Hide abstract] ABSTRACT: Cognitive deficits in participants and the abrupt and traumatic way in which many neurological conditions present are two examples of the unique challenges in recruiting and retaining participants with neurological injury for research studies. The purpose of this investigation was to identify obstacles to recruitment and retention in three ongoing research studies. These studies involve persons with neurological disorders across the continuum of care, from those newly diagnosed and with emergent presentation to those with more established chronic neurological conditions. For this analysis, we evaluated the effectiveness of the strategies employed to improve participation rates. The first study was a project funded by the National Institutes of Health designed to identify biomarkers of vasospasm in persons (n = 496) with aneurysmal subarachnoid hemorrhage who presented to the neurovascular intensive care unit (National Institute of Nursing Research, R01 NR004339). The purpose of the second study was to examine biobehavioral interactions in family caregivers (n = 59) of persons with a primary malignant brain tumor recruited in the community setting. The third project involved recruiting persons (n = 1,019) within an outpatient neurosurgical center to participate in a research registry. To determine differential effectiveness of strategies, consent and attrition rates were calculated at serial points over time in three studies, and recruitment and retention strategies were compared. Sentinel time points in participants' disease trajectories played a key role in determining whether those who were approached to participate gave consent and were retained, particularly in the studies involving persons with aneurysmal subarachnoid hemorrhage (consent = 85%; retention = 89%) and persons with primary malignant brain tumors and their caregivers (consent = 68%; retention = 83%). In addition, several specific recruiter and interviewer training techniques were associated with higher recruitment and retention. Targeted strategies to improve participation rates are vital for neuroscience nurses involved in any aspect of clinical research, including those who conduct studies, assist with data collection, and recruit potential participants.
[Show abstract][Hide abstract] ABSTRACT: Many research studies have been done in relation to the educational needs of patients and families post-stroke based in Western countries but limited studies have been conducted in non-Western countries. This study explored the educational needs of home-based stroke patients (HBSP) and family caregivers in the Kelantan state located at the northern part of Peninsular Malaysia. The other areas of focus were to identify the resources available for HBSP and their families, the practice of health professionals in relation to the provision of information and education and the early rehabilitation needs for HBSP and family caregivers. A further aim was to develop education strategies that will help patients and their families to minimise risk of complication post-stroke and support the advancement of their quality of life. This study used a qualitative approach guided by a theoretical framework "Stroke Care Community Model (SCCM)" developed for this research. This study was in two phases. Phase 1 involved semi-structured interviews with three kinds of participants: stroke patients (n=5), family caregivers (n= 5) and key members from health professional groups (n=12). Phase 1 established the educational activities currently received and needed by patients and families. Phase 2 involved presenting the findings from Phase 1 to the previously interviewed health professionals through focus groups and individual interviews with the aim of establishing priorities and processes to develop education strategies for HBSP and their families. The findings revealed that the provision of information and education does not meet the needs of many patients and families. There is no national or local programme provided to address patients' and families' needs. The educational needs are on a wide range of topics including the nature and the impacts of stroke, how and why stroke happens, how to prevent stroke recurring, prevention of complications and promoting faster recovery. The need for skills on managing patients at home include positioning, strengthening, mobilisation, prevention of complications, feeding, swallowing, managing co-morbid conditions, basic exercise and safety. The findings also revealed some needs are religiously and culturally bound around prayer and traditional healthcare practice such as urutan tradisional (traditional massage). Prayer and reciting Holy Qur'an are part of cognitive training, coping strategies, rehabilitation therapy and a source of psychological support. Therefore, there is a need to take the knowledge of what makes a difference to health outcomes of patients and families in a western context and work with this, utilising what is important in the culture of people at a local level. The next step to progress addressing educational needs requires a structured approach involving the formation of a multi-disciplinary stroke team that incorporates cultural and religious practice.
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