<b>Caregivers’ Perspectives and Preferences for a home-based Intervention Program for Children with Severe Cerebral Palsy in a resource-limited setting in South Africa</b>

<p dir="ltr">Background and objectives Children living with severe cerebral palsy (CP) in remote areas in South Africa have limited access to therapy services. Secondary musculoskeletal (MSK) complications are common, impacting on function and participation. This qualitative study explored contextual factors and caregiver needs, to inform the development and implementation of home-based intervention programs. Methods Caregivers of children <18 years with non-ambulant CP were purposively recruited from KwaNyuswa and KwaNgcolosi communities in peri-urban KwaZulu Natal. Caregivers completed semi-structured questionnaires and discussed open-ended exploratory questions in focus groups. Transcripts underwent thematic content analysis. Results Of 15 female caregivers (67% mothers), 5 (33%) had completed post-primary school level education, 12 (80%) were unemployed and all received a social grant. Travel time to health services averaged 30-60 minutes, with scarce attendance and virtually no therapeutic services. Most children had multiple MSK deformities, with limited social and community interaction and inadequate or no seating/mobility device. Caregivers expressed the need to receive positioning and mobility equipment, training in techniques to facilitate everyday activities (e.g. bathing, feeding) and preserve MSK flexibility, in order to improve motor development and social participation of their child. ConclusionThis study highlights caregivers’ needs for and receptiveness to a home-based intervention program for children with severe CP, living in resource-limited areas of South Africa.Clinical implications There is need for the development of a community-based training program for caregivers of children with severe CP, to reduce MSK complications, facilitate care-giving practices and promote social participation and improved quality of life.</p>