Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana

Background: Cerebral palsy (CP) is a non-progressive disorder of posture or movement caused by a lesion to the developing brain that results in functional limitations. The diagnosis of CP can vary from one child to another, causing family stress because of vague and unknown outcomes of the disorder. Although there are negative attitudes in Ghanaian societies towards primary caregivers and children with disabilities, fewer attempts have been made to understand their experiences.

Objectives: The main aim of this study was to explore the experiences of primary caregivers across the trajectory of the diagnosis (before, during and after) of CP in the setting of a tertiary hospital.

Method: Using Social Capital Theory as framework, 40 primary caregivers of children with CP, who were receiving treatment at a major referral hospital in Ghana, were interviewed about their experiences before, during and after diagnosis.

Results: The results that emerged from the thematic analysis were discussed as follows: experiences before diagnosis, experiences during the diagnosis and experiences after the diagnosis. Particularly, participants discussed their inability to access essential services such as education for their children with CP.

Conclusion: In light of systemic challenges faced by participants and their children with CP, the need for health policymakers to prioritise the public education about CP, promoting the well-being of caregivers and other implications of the study have been discussed.