Quality of life of caregivers of children with cerebral palsy at hearts, hands and voice foundation, winneba

Abstract

This qualitative study aimed at the quality of life of caregivers of children with cerebral palsy. This research involved engaging in semi structured interview with caregivers of children with cerebral palsy who shared their personal experiences, concerns and perspectives on their quality of life. Through thematic analysis, common themes emerged, shedding light on the four domains of these caregivers’ quality of life. Physical health status, psychological well being, social relationships and environmental experiences of caregivers’ of children with cerebral palsy. Physical strain under the physical well being and chronic pain were frequently mentioned, leading to fatigue and limitations in participating in daily activities. Emotional well-being was significantly impacted, with caregivers expressing feelings of stress, anxiety, and isolation. The demands of caring for a child with cerebral palsy, coupled with societal stigma and limited social support, contributed to these emotional struggles. Financial difficulties were also evident, with caregivers often living in precarious financial situations and struggling to meet the needs of their children. Access to adequate healthcare and specialized services for their child was a common concern, with some caregivers relying on foundations and support organizations for assistance and information. Support networks, such as Hearts, Hands and Voice Foundation, Ghana Federation of Disabilities, and local community groups, played a vital role in providing information, training, and social support to the caregivers. These resources helped caregivers acquire knowledge, connect with others in similar situations, and receive assistance in their caregiving responsibilities. The findings of this study contribute to the understanding of the quality of life of caregivers of children with cerebral palsy. The research highlights the need for increased awareness and support for caregivers, including access to comprehensive healthcare services, financial assistance, and social support programme. The recommendations derived from this study can inform the development of interventions aimed at improving the quality of life of caregivers of children with cerebral palsy.