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What I Wish I Had Known:

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

Published Date: 1.1.2025

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Theme: Developing skills and knowledge

Sub-theme: Self-advocacy

Carer support Children with disabilities Support and Training Policy Health care services Qualitative study Thematic analysis

Verification Statement

This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


To report an issue or request a change, please complete our Feedback Form.

 

Theme: Developing skills and knowledge

Sub-theme: Self-advocacy

View Publication Carer support Children with disabilities Support and Training Policy Health care services Qualitative study Thematic analysis

Verification Statement

This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


To report an issue or request a change, please complete our Feedback Form.

 

What I Wish I Had Known:

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

Published Date: 1.1.2025

  • Author/ Authors

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

  • Suggested citation (APA 7th edition)

    Nevill, T., Keely, J., Skoss, R., Collins, R., Langdon, K., Mills, J., & Downs, J. (2025). What I wish I had known: examining parent accounts of managing the health of their child with intellectual disability. Health Expectations, 28(1). https://doi.org/10.1111/hex.70138

Long 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.

    Key Messages for Carers


  • Learning how to navigate healthcare systems, communicate effectively with professionals, and find the right support can significantly improve a child’s health outcomes and reduce stress for carers.
  • Managing a child’s complex health needs can be overwhelming, but support networks, including peer groups and healthcare professionals, can provide guidance and reassurance. Connecting with others who have similar experiences can help build confidence and resilience in the caregiving journey.

  • Key Messages for Policy Makers


  • Children with intellectual disabilities have complex and ongoing health needs that require better integration between healthcare, disability, and support services. It is important to streamline service navigation, establish timely interventions, and improved transitions from pediatric to adult care to create better support systems for all.
  • Parents play a critical role in managing their child’s health but often struggle due to a lack of early guidance. It is important that Policy makers to support programs that equip parents with essential health knowledge, advocacy skills, and access to reliable information and peer networks.

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By the same Author

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The Carer Knowledge Exchange is led by Carers NSW and proudly funded by the NSW Government. It was established as a partnership between Carers NSW and the Institute for Public Policy and Governance (IPPG) at the University of Technology Sydney from 2021-2024. We acknowledge Aboriginal and Torres Strait Islander peoples as the First Australians and Traditional Custodians of the lands where we live, learn and work.