Understanding Parental Caregiving for Children with Cerebral Palsy in Saudi Arabia: A Multi-Method Study Combining Insights from a Scoping Review and Qualitative Data

Abstract

Cerebral palsy (CP) is the most common motor disability in childhood, affecting approximately 2-3 per 1,000 live births worldwide. The lifelong nature of CP places significant caregiving responsibilities on families, particularly parents. Understanding parents' experiences and support needs is critical to informing effective interventions and advancing disability research. While CP caregiving has been widely studied, research involving Arab parents of children with CP, particularly in Saudi Arabia, remains scarce.

The overarching goal of this thesis was to explore the caregiving experiences of Saudi parents of children with CP and characterize their support needs through a social-ecological lens. This thesis includes two studies, starting with a scoping review that examined existing research on CP caregiving in the Arab contexts, identified gaps in knowledge, and offered recommendations for future studies. Then, a qualitative exploratory descriptive interview study involving 12 Saudi parents from Qassim, Saudi Arabia, aimed to explore their caregiving experiences and characterize their support needs.

The scoping review revealed that mothers are predominantly the primary caregivers in Arab contexts, and that caregiver burden is a major concern. However, the qualitative study in Saudi Arabia showed that caregiving responsibilities are shared between both parents, with roles shaped by traditional gender norms. Parents faced significant emotional, physical, material, and informational challenges, with financial strain being particularly pronounced. Barriers to accessing education and health care services further contributed to caregiver stress. However, Islamic spiritual values played a pivotal role in fostering collectivism and community involvement, serving as vital sources of resilience and social support for parents navigating caregiving responsibilities.

Overall, the integrated findings showed that effectively supporting Saudi and Arab parents of children with CP depends on understanding their unique experiences and cultural context. To achieve this understanding, families, communities, support organizations, and the government must work together. Future research and program development should consider these contexts to support and effectively address the needs of parents of children with CP in Saudi Arabia.