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Caring for a child with learning disabilities: over a prolonged period of time: an exploratory survey on the experiences and health of older parent carers living in Scotland
- Authors:
- CAIRNS Deborah, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 27(5), 2014, pp.471-480.
- Publisher:
- Wiley
To examine the impacts of a lifetime of caring on older parents of offspring with learning disabilities an exploratory postal survey was completed by 100 older parent carers. The survey including the Medical Outcome Study (Short Form) 36 version 2 (SF-36v2). The reported survey is part of a larger mixed method study including in-depth interviews. The majority of respondents (n = 91) reported caring for 50 h or more per week with multiple caregiving duties. While the SF-36v2 reported physical health of older parent carers to be similar to UK norms, their mental health was significantly reduced. The findings highlight the vulnerability of ageing parents of offspring with learning disabilities. This previously underreported situation warrants further investigation and urgent attention from health and social care agencies and professionals. (Edited publisher abstract)
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)