Parental perceptions of information needs and service provision for children with developmental disabilities in rural Australia

Abstract

Purpose: Rural Australians comprise a third of the population. However, there are relatively few research studies that have focused on issues for children with developmental disabilities in rural regions. In particular, there is very limited research that gives voice to parents regarding challenges faced by them due to their location in rural regions. Methods: This article is based on the qualitative component of a mixed-methods study undertaken in rural settings. In-depth, face-to-face interviews were conducted with 17 parents yielding 30 h of information rich taped data. Thematic analysis techniques were used to identify major issues. Results: Three core themes emerged from analysis of the qualitative data regarding information and support needs: an ongoing lack of timely and relevant information about disabilities and support services; inadequacies in interactions with service providers particularly doctors and allied health staff; and considerable challenges and barriers to access and use of health services. Conclusions: Within the constraints of limited rural service provision, there are still opportunities for considerable improvements, through focussed in-service training to narrow the information gap, improve provider-client interaction around attitudinal issues and uptake of tele-health to minimise the long waiting times and the need to regularly travel long distances to access services and setting up online support groups.

Implications for Rehabilitation

• There is limited information on challenges faced by parents of children with developmental disabilities in rural Australia.

• The challenges around lack of information about support systems available add to parental stress as does limited experience, frequent staff turnover and poor attitude of many service providers.

• There is a need to improve rural service provision. Feasible options within resource constraints include focussed in-service training to narrow the information gap, improve provider-client interaction around attitudinal issues, and uptake of tele-health services.

• Setting up of parent-professional support groups as well peer support groups using digital technologies will help reduce the sense of isolation for rural carers and minimise impediments related to travelling long distances.

• Australia
• developmental disabilities
• information needs
• rural
• support services

Acknowledgements

The authors would like to thank family caregivers and the disability agencies for their time and are grateful for their contribution. A special thanks to Dr Annie Carn who assisted with the data collection for in-depth interviews.

Declaration of interest

The authors and associated staff have no conflict of interest with any funding agency or in relation to use of certain survey tools. The project was funded by a research grant from the Australian Foundation for Research on Intellectual Disabilities (AFRID). Logistical support was provided by regional disability organizations.