Moving towards Midlife Care as Negotiated Family Business: Accounts of people with intellectual disabilities and their families “Just getting along with their lives together”

Abstract

This study explores meanings of family care held by seven families that include a middle‐aged adult with intellectually disability. In‐depth interviews were conducted with members of each family—the person with intellectual disability, parents, siblings, and sibling spouses. Participants described care as simply getting on with their lives, as “Family Business”, characterised by the conduct of well‐understood tasks and routines. As such, all, including the person with intellectual disability, performed roles critical to the well‐being of each other and the family as a whole. Family Business was underpinned by negotiated, albeit often implicit, rules that reflected family values and were amenable to changes in circumstances throughout the lifecycle. Future planning was perceived as a sensitive whole family issue. Interdependence among members was key to retaining family independence from formal services that were regarded as a “top up”. Suggested is the importance of services adopting a relational approach to understanding family care and supporting future planning for middle‐aged people with intellectual disabilities, rather than simply focusing on “older carers”.

Keywords:

• Ageing
• Carers
• Family care
• Family lifecycle
• Future planning
• Intellectual disability

Acknowledgement

This project was funded by an Australian Research Council grant administered by La Trobe University. Opinions reflect those of the authors and do not necessarily reflect those of the granting agencies.