Gunilla Margareta Eriksson1,2, Julius Tunga Kamwesiga3,4, Susanne Guidetti3. 1. Division of Occupational Therapy, Karolinska Institutet, Stockholm, Sweden. gunilla.eriksson@ki.se. 2. Rehabilitation Medicine, Uppsala University, Uppsala, Sweden. gunilla.eriksson@ki.se. 3. Division of Occupational Therapy, Karolinska Institutet, Stockholm, Sweden. 4. Uganda Allied Health Examinations Board, Kampala, Uganda.
Abstract
BACKGROUND: Stroke 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. METHOD: A 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. RESULTS: Five 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. CONCLUSIONS: 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. 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.
BACKGROUND:Stroke 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. METHOD: A 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. RESULTS: Five 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. CONCLUSIONS: 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. 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.
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