Abstract
BackgroundStroke is increasing in Africa and consequences such as limitations in the performance of activities in everyday life persist a long time. A family member might need to care for and assist the person who has had a stroke. The life situation of these caregivers thereby changes, which could lead to increased workload and new responsibilities in caring for which they lack but request knowledge. During the F@ce rehabilitation program, the caregivers received counseling, which is uncommon in the African context. The aim of the study was twofold; (1) to investigate the perceived caregiver burden and life satisfaction and, (2) to explore and describe the life situation for caregivers to persons that have had a stroke and received the mobile phone supported rehabilitation F@ce in urban areas in Uganda.MethodA mixed method design was used. Twelve caregivers took part in a semi-structured interview regarding their everyday life situation and responded to questionnaires on caregiver burden and life satisfaction. Latent qualitative content analysis was used to analyse the interviews.ResultsFive categories were identified in the caregivers’ experiences of their life situation: Feels obligated but is just a natural commitment; a tightly scheduled everyday life; being the supporting relative; the caregivers´ approach as rehabilitators; and being supported by the rehabilitation intervention. The caregivers rated relatively high on the Caregiver Burden Scale and two thirds of the sample rated their satisfaction with life as a whole as dissatisfying. Further ratings on the Life Satisfaction checklist revealed that the financial, vocational, leisure and family situations were dissatisfying.ConclusionsEven if it was viewed as a natural commitment to be a caregiver when a family member had had a stroke, the life situation changed substantially for those who took on the caregiving role. Caregiving responsibilities were challenging as well as a heavy workload and a strained financial situation as many were giving up on jobs. The participants felt burdened and rated a low life satisfaction. The F@ce intervention was, however, expressed as valued and involved support and advice in their caregiving situation as well as information on stroke which relieved stress among them.
Highlights
Stroke is increasing in Africa and consequences such as limitations in the performance of activities in everyday life persist a long time
The caregivers rated relatively high on the Caregiver Burden Scale and two thirds of the sample rated their satisfaction with life as a whole as dissatisfying
Even if it was viewed as a natural commitment to be a caregiver when a family member had had a stroke, the life situation changed substantially for those who took on the caregiving role
Summary
Stroke is increasing in Africa and consequences such as limitations in the performance of activities in everyday life persist a long time. The onset of a stroke appears suddenly and may lead to motor and cognitive impairments as well as limitations in the everyday life activities, such as decreased ability to perform self-maintenance and household chores [4] These consequences of stroke might persist for a long time [4] and were found to be one cause of chronic disease in Uganda [5]. A study on the impact of stroke in a chronic sample from Uganda found that strength, hand function, participation in activities as well as performing activities of daily living (ADL) such as self-care and performing household activities were the most impacted [6] This implies that the consequences of a stroke can affect everyday life negatively for the families that need to provide assistance. Providing care is mostly a female responsibility according to African tradition, which adds to their general responsibility for the families’ overall health, food, security and child welfare [9, 10]
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