Understanding the Parental Caregiving of Children with Cerebral Palsy in Saudi Arabia: Discovering the Untold Story

Parents provide most of the support needed for children with cerebral palsy (CP) to increase the child's participation and independence. Understanding the experiences of parents caring for children with CP is essential for developing effective family programs and services. The current knowledge about parents' experiences in CP is based on studies in Western countries, with little known about this phenomenon in Arab countries like Saudi Arabia. This study aimed to understand the unique experiences and support needs of Saudi parents caring for children with CP from a social-ecological perspective. We conducted a qualitative, exploratory, descriptive study involving 12 semi-structured interviews with mothers and fathers of children with different types of CP. We analyzed the data using a reflexive thematic approach, following six distinct phases. Participants' narratives revealed a complex caregiving journey marked by both challenges and rewards. Support from Saudi nuclear and extended family members was considered important; however, many parents expressed a need for additional physical and financial assistance from their families. Parents reported feeling stressed and experiencing challenges in accessing and navigating educational and healthcare services. Our findings highlight that Islamic values play a crucial role in the experiences of Saudi parents. These values foster a sense of collectivism, highlighting the importance of family support and community involvement, which can affect the Saudi caregiving environment. Parents remain an essential yet often invisible part of the Saudi caregiving system. Without adequate support, parents are at risk of experiencing social, financial, academic, physical, and mental health challenges, which may affect their overall family well-being. Future work may need to consider spiritual and gender roles when developing programs or services to support Saudi parents of children with CP.