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 intellectually 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 focussing on "older carers".