Abstract

Aim: The purpose of this study was to describe how the parents/caregivers of children with heart diseases cope with the demands of caring for these children at home, with the purpose to develop a home-based health care programme to facilitate the parents/caregivers’ coping with the demands of care.

Methods: A qualitative, exploratory, descriptive, and contextual study was conducted. Phenomenological data on the lived experiences of coping with the demands to care by the parents/caregivers and of living with the burden of the disease by the children were gathered and interpreted from a purposefully selected sample of 5 multiple cases of parents/caregivers and children with heart disease from the rural areas.

Results: The findings have revealed poor coping with the demands of caring among the parents/caregivers, as characterized by the experiences of emotional challenges, disruptive social functioning and social relations, lack of support from the family and societal organizations, financial difficulties and of course the experiences of decreased vitality by the children. As a result, the need to empower the parents/caregivers for them to cope with providing a continuum care to their children who have heart disease was identified. The dynamics to mitigate the negative experiences were conceptualized. Therefore, the interventions of a home-based health care programme as an interface to facilitate the parents/caregivers to cope with the challenges caused by the demands to care were developed.

Conclusions: The need for empowerment of these parents/caregivers can be met through the implementation of multi-component interventions, which draw together all the possible determinants factors and the coping methods to facilitate coping.

This work is licensed under a Creative Commons Attribution 4.0 License.