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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
- Authors:
- CAIRNS Deborah, et al
- Journal article citation:
- British Journal of Learning Disabilities, 41(1), 2013, pp.73-82.
- Publisher:
- Wiley
This 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 aged between 65 and 89 years (six mothers and two fathers) of offspring with learning disabilities over a prolonged period of time. The article: (i) presents a conceptual framework, grounded in the experiences of older parent carers who participated in this research and; (ii) aims 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. Participants responses are discussed under the following themes: a life not forseen; going it alone; reaching a decision; and nearing the end. 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. (Edited publisher abstract)