Caregiver Experiences: Caring for a Child with Cerebral Palsy Presenting with Speech Impairment at the University Teaching Hospital, Lusaka, Zambia

Abstract

Background: Many children with cerebral palsy present with disturbances in sensory, cognitive and motor development which subsequently affect the child’s speech, language and communication development. Caregivers taking care of such children are heavily burdened andif not addressed such cumulative burden may in turn have influence on the quality of care for children with cerebral palsy.weset out to explore the experiences of caregivers ofchildren with cerebral palsy who present with speech impairments and to identify which strategies they use to communicate with their children. Methods: A qualitative phenomenological study was used. Data was collected using in-depth interviews from a purposively selected sample of 8 caregivers of children with cerebral palsy presenting with speech impairment at the University Teaching Hospitalin Lusaka, Zambia. Results:Three themes emerged from the data on caregivers’ experiences caring for a child with speech impairments and one theme from data on communication strategies used by caregivers. The themes on caregiver experiences included impact of speech deficit; beliefs about speech impairment; and Lack of knowledge. The theme on communication strategies had three sub-themes namely understanding through the gaze; a different kind of sound; and trial and error.Conclusion: This study has revealed that caregiver beliefs, lack of knowledge on availability of speech therapy and special education make it difficult for them to understand speech problems experienced by their children. Furthermore, the study also showed that caregivers devise their own strategies of communicating with their children despite the absence of speech and language therapy services. Keywords:Stress level, academic concerns, sources of stress, academic stress, stressor