Supporting the development of advocacy in the parent/carers of Queensland children with disability

Supporting the development of advocacy in the parent/carers of Queensland children with disability

This body of research takes a pragmatic approach to supporting the capacity of parents to effectively advocate on behalf of their children with disabilities across complex systems. It demonstrates an understanding of advocacy in this context and defines the complex role of the parent caring for a child with disability. It consists of a robust background and literature review and four subsequent studies, each building on the knowledge base provided by the previous.

The first study is a systematic literature review that examines the research related to the parental experience of engaging on behalf of their children with the National Disability Insurance Scheme (NDIS), a fledgling Australian program of individualised disability support delivery. This was a necessary focus because the NDIS is new and literature is only now being published as the program is enacted region by region. The NDIS represents a significant shift in the delivery of support and services to persons with disability in Australia and its focus on individualised funding demands more of persons with disability and their families than previous system-led models.

The second (primary) research study explored the collective experiences of ten parents in developing and exercising advocacy skills and included a broad range of family structures, disability types, and children’s ages. Building on the thematic findings of these interviews, the third (primary) research study explored the experience parental advocacy from the perspective of service providers. Thematic analyses highlighted similarities and differences in the experiences and expectations of the parent-professional partnership.

The final (primary) study involved the design and delivery of a parent-focussed, peer-led capacity building program. It included pre- and post-intervention measures and questionnaires to evaluate the benefits of the program. The research found that the health system – as primary responders to the presence of disability – is organically well placed to partner with families in capacity building at or around the time of diagnosis or significant transition. It further found that the structured design framework resulted in support that targeted the needs of the family participants in a way that was perceived as relevant, topical, and timely. Participants demonstrated and reported improved empowerment and perceived self-efficacy and a trend towards reduction in the frequency and impact of situational stressors. They reported increased confidence and beneficial outcomes associated with their acquired advocacy skills and knowledge and the value of a peer base of support.