Experiences of caregivers of children with hydrocephalus at Queen Elizabeth Central Hospital
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Date
2018-04-01
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Abstract
The impairment of cortical connectivity involving the afferent and efferent pathways in hydrocephalus usually leads to cortical pathway dysfunction. Consequently, in most of the affected children the dysfunction is permanent causing both motor and cognitive deficits and behavioral difficulties. This causes the affected child to entirely depend on the caregiver for all daily functions. Therefore parents are responsible for helping the child in all the activities of daily living. Understanding parents’ experiences has the potential to improve parent–professional collaboration and the management of the child’s condition. To explore parents’ experiences of living with a child with hydrocephalus and their responsibility of having to care for a growing child who is entirely dependent on them.
Design and methods: A descriptive qualitative method was undertaken, and twenty caregivers were interviewed using an in depth interview guide. Six themes were identified; strange illness, financial constraint, work overload, social stigmatization and support system. The identified themes were all from the parent’s verbalized experiences, the caregivers referred to hydrocephalus as a strange disease which they have never heard or seen. Financial constraint is a major challenge arising from their failure to work or do business and from frequent hospitalization. Social stigmatization was another major challenge which was deterring the caregivers form participating in important community events. Furthermore support system involved the support the caregivers received from their friends and relatives, health professionals and the organizations. Therefore, caregivers of children with such a condition must cope tremendous emotional, physical and economic burdens, although in the course of this, they gain a vast experience on care management approaches of the affected child. Therefore collaboration with parents requires health professionals to listen to parents’ concerns and value their experiences.