Parents, services and system: an exploration of power dynamics in future planning among parent carers for people with disability

Abstract

Interactions between services and families have significant implications for families planning for the future needs of a family member who has a disability. However, little research interrogates the implications of these relationships for parent carers’ agency in this planning. This qualitative study explored parents’ experiences with public and not-for-profit services during planning. Findings revealed varied and fluid power dynamics, with attempts by carers to shift to more productive power relations, which carried risks and costs. In a context characterised by systemic constraints, these shifts create an iterative planning process, and highlight the need to support parents to use power productively.

Keywords:

• Parent carers
• services
• power
• planning
• service providers

Acknowledgements

The contributions to this project of the families who participated as well as the participating organisations and their staff are gratefully acknowledged. The authors would also like to thank Grace Bitner for her assistance with the research.