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What I Wish I Had Known:

Examining Parent Accounts of Managing the Health of Their Child With Intellectual Disability

Thom Nevill, Jessica Keeley, Rachel Skoss, Rachel Collins, Katherine Langdon, Jaquie Mills, Jenny Downs

1.1.2025

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Summary

This study explores the experiences of parents managing the health of children with intellectual disabilities, who often face ongoing health challenges. Parents, particularly mothers, play a crucial role but frequently struggle with accessing services, understanding their child’s condition, and navigating the transition to adult care. While they develop essential skills over time, many wish they had received better guidance earlier. This study highlights five key areas for support: improving communication with healthcare providers, effective healthcare planning, accessing timely and accurate information, finding appropriate support, and understanding the healthcare and disability system. Enhancing parents' knowledge, advocacy skills, and access to peer support can help ease these challenges and improve outcomes. This study emphasises the complexity of managing these health conditions and suggests that strengthening health literacy is key to empowering parents in this process.

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