Beyond Words: Understanding Pain in Children with Intellectual Disabilities in Saudi Arabia Through the Eyes of Mothers and Providers: Reflexive Thematic Analysis.

Abstract

Background: Children with intellectual disabilities frequently experience significant pain due to specific health conditions and increased susceptibility to everyday accidents. They may require specialised medical and rehabilitative interventions, and their limited communication abilities make it challenging to express and describe pain, leading family members and healthcare providers to rely on behavioural cues. In Saudi Arabia, where disability presents substantial medical, social, and economic challenges, no prior study has explored pain assessment in children with intellectual disabilities from the perspective of parents and healthcare providers. Aim: This study aimed to examine pain assessment practices for children with intellectual disabilities in Saudi Arabia, focusing on the experiences and perspectives of parents and healthcare providers. Methods: Qualitative data was generated through interviews with 20 mothers and focus groups with 16 healthcare providers. Reflexive thematic analysis was employed to interpret the data. Results: The data analysis revealed that the mother's experience with pain assessment for her child with intellectual disabilities was multifaceted and influenced by several interconnected factors. Healthcare providers demonstrated notable gaps in knowledge, attitudes, and practices, highlighting challenges in pain detection, professional development, and the paradox of parental engagement. Issues extended beyond standard clinical practices, reflecting systemic barriers. Conclusion: This study is the first of its kind in Saudi Arabia to examine pain experiences in children with intellectual disabilities from the perspectives of mothers and healthcare providers. The findings reveal the influence of cultural norms, healthcare policies, and resource limitations on pain assessment, offering insights into the complex challenges within this context and emphasising the need for culturally informed, supportive pain assessment strategies.