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

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