The need for future alternatives: an investigation of the experiences and future of older parents caring for offspring with learning disabilities over a prolonged period of time

Abstract

Accessible Summary This article reports on interviews with eight older parent carers who cared for their children with learning disabilities. The aim of this study was to understand parent carers’ experiences of caregiving and their views on the future. The findings revealed the following: Parents lacked support Parents did not receive enough information and practical resources Some parents continued caring despite poor mental and/or physical health All parents were concerned about their child's future Most parents said that they were unable to think about their future and their needs SummaryThis article reports on the results of a qualitative study (in‐depth interviews) carried out in the United Kingdom as part of a larger (two‐phased) study investigating the experiences, health and future perspectives of older parent carers (six mothers and two fathers) of offspring with learning disabilities over a prolonged period of time. The objectives of this article are twofold: (i) to present a conceptual framework, grounded in the experiences of older parent carers who participated in this research and; (ii) to come to a more in‐depth understanding of older parent carers’ experiences of caregiving, and views on their own future. A detailed analysis of the data revealed important issues with regard to prolonged caregiving. Overall, older parent carers felt that they lacked support, information and practical resources throughout their caregiving career. Some parents continued in their caregiving role despite their deteriorating mental and/or physical health as there appeared to be no alternative, and most parent carers expressed that they were unable to think ahead to their own future and needs owing to the absence of suitable care alternatives. The findings suggest that there is an urgent need to review how individuals with learning disabilities and parent carers are supported throughout their lifespan.