Experiences of family/informal caregivers of disabled stroke patients in Lusaka, Zambia.

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Kunda-Ng’andu, Evelyn Muleba
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The University of Zambia
Background: Stroke is one of the leading causes of death and disability in the world. It is the leading cause of adult-onset disability, and causes nearly 80% of all global stroke mortalities. After suffering from a stroke, patients, suffer from varying degrees of disability that require management and extended care at home. Caregivers‟ responsibilities in caring for the patient result in stress, particularly when their own needs are inadequately addressed during the patient‟s recovery. Aims: This study aimed to document the experiences of family/informal caregivers of disabled stroke patients in Lusaka, Zambia. Settings and Design: A phenomenological qualitative study was conducted at the University Teaching Hospital and in three communities of Lusaka district. Methods and Materials: Participants for in-depth interviews were purposively selected for their experience in caring for their family members who survived a stroke. 12 participants in total were interviewed. With participant‟s permission, the interviews were audio-recorded to accurately capture the narratives. Field notes complemented the audio recorded data to account for non-verbal communication and in case of technological failure. Data was collected using an interview guide for the family caregivers and for the key informant interview a separate guide for the key informants was used. Analysis used: Phenomenological hermeneutic interpretation was used to analyse the data. Themes were generated and explained from the comprehensive understanding. Data were managed on Nvivo. Results: Caregiving absorbed the caregivers‟ strength and robes them of the freedom to be their own person as they had to adjust to the role of caregiving. Experiences of tiredness, giving up, sadness, hope, fulfilment and distress were intensely expressed present in the narratives. It was also found that more of the family caregivers were female compared to males. Conclusion: Family caregivers of disabled stroke patients experience physical, social, financial, and emotional challenges in their execution of care. Despite the stress that they go through in their care giving role, they receive very little support from society as a whole. It is important therefore, that caregivers are supported in their caregiving role in order to facilitate the rehabilitation of disabled stroke patients. Caring for the careers will also improve their mental health and overall wellbeing, and negate the development of non-communicable diseases which they are prone to as a result of their care giving role. It is recommended that the Ministry of Health looks into providing social support for the caregivers.
Thesis of Master of Public Health, Health Promotion and Education