Cerebral palsy has been identified as the most common, chronic childhood disability that causes appreciable motor deficit. Building the capacity of caregivers and improving children’s functional capacities through rehabilitation programs could reduce the physical and psychological burden imposed by the caregiving process. There is paucity of information about the experiences of caregivers of children with cerebral palsy in Ghana especially those who are not receiving any form of care. The purpose of this study was to explore the experiences and perception of caregivers living in rural communities.
A descriptive phenomenological approach as proposed by Husserl was used to explore the experiences of 12 caregivers of children with cerebral palsy aged between 2 years 9 months to 14 years. The caregivers’ interviews were analysed using Colaizzi’s phenomenological method of data analysis framework.
Two main themes emerged from the narratives of the caregivers. The first theme ‘Developing personal beliefs to support the caregiving role’ revealed that caregivers developed religious and spiritual beliefs to interpret their children’s condition, perceive the standard of care and negatively their beliefs caused feeling of despair and sorrow. The second main theme ‘Demands that shaped the experience of caring’ revealed the demands included physical, financial and social demands. The essential structure of the phenomenon demonstrated the complex interaction of personal and environmental factors in harmony with the actual demands to influence the experiences of caregivers positively or negatively. Positively caregivers achieve coping, committed to caring, hope for the future and acceptance of the condition of their children. However negatively caregivers described the triggering factors of feeling of despair and sorrow as frustration, lack of understanding of the condition, felt stigmatised and perceived that the child was going through pain and suffering.
Caregivers derived strength from their religious and spiritual beliefs to balance the demands of caregiving. The new findings could be used as a basis for developing interventions to support caregivers, inform new strategies for rehabilitation care delivery and sensitisation of community members about inclusion of children with disabilities in the future
|Date of Award
|Chris Carpenter (Supervisor) & Simon Igo (Supervisor)
- Cerebral palsy