Healthcare SAVVI: Exploring health literacy and parents' experiences in supporting the health of children with intellectual disability

Aim: Research on the health literacy of parents with children with intellectual disability is limited. Understanding parents’ healthcare skills and needs is essential for improving children's health and developing effective support. In this study we aimed to (1) explore the health literacy skills of parents that enabled them to support the health needs of their child with intellectual disability and the factors influencing these skills, and (2) identify opportunities to support parent health literacy. Methods: A qualitative study was carried out using interviews with 24 parents of children and young people with intellectual disability. A directed content analysis was completed, guided by the nine domains included in the Health Literacy Questionnaire. Results: Participants demonstrated strong health literacy skills; however, there was diversity in their strengths and needs across different domains of health literacy. Navigating healthcare systems was the key area where participants faced challenges and required further support. Participants described factors including educational levels, professional expertise, experiences over time, and relationships with healthcare professionals which influenced their health literacy. Opportunities to improve health literacy were identified, addressing parents, healthcare professionals, and healthcare and disability services. Conclusion: Developing and maintaining health literacy is critical to parents supporting the health of children with intellectual disability. These results provide insight into how health literacy interventions can be designed to support parent health literacy. Practice implications: The study provides participants’ recommendations for how healthcare professionals can support parent health literacy. These recommendations relate to the health literacy responsiveness of the professional and service.