'What Do We Do Next?' Australian Carer Experiences of Recommendations in Neurodevelopmental Diagnostic Reports: A Qualitative Study Using the Framework Method

Diagnostic and developmental assessment reports communicate outcomes and recommendations for children with neurodevelopmental conditions (NDCs), supporting access to interventions, funding and educational accommodations. However, little is known about caregivers' perceptions of the clarity, usefulness and applicability of these recommendations.

This qualitative study explored caregiver experiences of recommendations following comprehensive developmental assessments at a publicly funded tertiary paediatric service in Sydney, Australia. Thirteen semi-structured interviews involving 14 caregivers of children aged 2-13 years were conducted between January and July 2025. Participants represented diverse cultural, linguistic and educational backgrounds. Interviews explored the clarity, usefulness and relevance of report recommendations. Data were analysed using the Framework Method.

Five themes were identified: quality of recommendations, practical considerations, access to funding, access to information and broader service-related issues. Caregivers generally described recommendations as clear, practical, comprehensive and consistent with verbal feedback. Reports supported disability funding applications, educational planning and communication with schools and service providers. Areas for improvement included more personalised, child-centred recommendations; clearer explanations of diagnostic terminology and funding pathways; greater detail about available services and practical implementation guidance. Caregivers also reported difficulties navigating funding systems, accessing services and prioritising recommendations alongside family demands.

While recommendations were viewed positively overall, findings identified opportunities to improve relevance, accessibility and implementation. Child-centred recommendations, structured follow-up and care coordination may strengthen report impact and better support families to navigate services and interventions.