Beyond routine care for children with heart diseases from the vulnerable context: A clinical practice perspective

摘要

The statistics of children with heart diseases are notable in Namibia many of whom are from the rural area. While waiting for surgical corrections or when the child is a case for palliative care, these children have to be cared for at home, a task that can be doubtful for a rural caregiver. A qualitative, exploratory, phenomenological and contextual study was conducted to describe the experiences of rural caregivers regarding provision of home care for children with heart disease. The children’s experiences of living with the disease at home were also assessed because the burden of the diseases intensifies the demands for care. The findings revealed that both the caregivers and the children experience challenged emotions, disruptive social functioning, lacking of support from the family, lack of support from societal organisations as well as experiences of low vitality among the children. These experiences together, signify the overall poor coping by the caregivers and the children. Therefore, caring for a child with a heart disease at home requires a plan of individualized care which considers the context and the socio-economic status of the caregivers as the determinants for coping with providing care at home. Based on the findings, key recommendations were made among others to the clinical practice setting as an entry point to the care provided to these children. This paper provides a detailed description of the proposed health care intervention in the clinical setting to facilitate effective home care to children with heart diseases from the rural context.