Analyzing the lived experiences of primary caregivers of children with cerebral palsy attending the Korle-Bu Teaching Hospital in the Greater Accra Region, Ghana.
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Date
September, 2016
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Abstract
Cerebral palsy presents in early childhood as a set of functional limitations that stem from disorders of the developing central nervous system. It is a non-progressive disorder that results from an anoxic brain injury to the foetal or new born brain. Because this disorder can cause disability ranging from mild to severe effects on motor and cognitive functioning, the diagnosis can vary from one child to another, causing family stress due to vague and unknown predicted outcomes of the disorder. The diagnosis of cerebral palsy affects families in different ways depending on coping mechanisms, support systems, and age and level of functioning of the child among other factors, it is therefore important to assess the experiences of their caregivers. This study reports on the lived experiences of primary caregivers of children with cerebral palsy attending the Korle Bu Teaching Hospital in the Greater Accra Region of Ghana. The study utilized a phenomenological approach to look at primary caregivers as the best-informed authority to explore and describe their lived experiences of caring for their child with cerebral palsy. In this qualitative study, forty (40) primary caregivers of children with cerebral palsy were interviewed regarding their experiences before the diagnosis of the condition, during the diagnostic process and post diagnostic experiences. Semi-structured, in-depth, face to face interviews and participant observation were the methods used for data collection. Narratives of 40 participants were transcribed and analysed using thematic coding. The themes and categories that resulted from the content analysis were under three broad fields of experiences namely: Experiences before the diagnosis of the condition, experiences during the diagnosis of the condition and experiences after the diagnosis of the condition. In terms of experiences before the diagnosis, two themes emerged: (1) Confronted with a situation of a child with an abnormality as a new mother, (2) Breaking out of the superstitious beliefs. Regarding experiences during the diagnostic process, three themes emerged: (1) Issues of blame and responsibility (2) Confusion and mistrust with helping professionals (3) mixed feelings about the diagnosis. Four themes emanated from the experiences after the diagnosis of the condition namely: (1) strained family relations (2) Experience of poverty (3) Experience of loss of social life (4) The challenge with finding educational resources and day-care. It is recommended that future research should expand beyond the scope of this work and include caregivers of children with different types of disability.
Description
A Thesis Submitted to Department of Community Health,
College of Health Sciences
in partial fulfilment of the requirements for the degree of
Master of Science
(Disability, Rehabilitation and Development),