Caring for a child with a learning disability born into the family unit: women's recollections over time

Abstract

Caring over time for a child/young adult with a learning disability requires that the family, and in particular the mother, negotiate their needs with services and professionals, and these negotiations are complicated further by significant behavioural issues in the children. This study reports on a series of interviews undertaken with mothers of children and young adults with learning disabilities and a history of challenging behaviours. The interviews were supplemented by documentary data from clinical and other notes in order to provide a more detailed view of the issues arising from caring over time. Detailed thematic analysis revealed five key themes demonstrating the cumulative effect of caring for someone with such complex needs, the centrality of that individual's needs to the lives of those interviewed and the ongoing negotiation between family and professionals required in order for the former to work out how to continue caring both effectively and on their own terms. All the names of mothers and children are psuedonyms.

Keywords:

• learning disability
• family
• negotiation
• professional involvement
• challenging behaviour

Acknowledgements

The authors would like to thank the women who spoke so openly and in such detail about their lives.