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

British Journal of Learning Disabilities

Volumn 41, Issue 1, 2013, Pages 73-82

  Cairns, Deborah ^a   Tolson, Debbie ^b   Brown, Jayne ^b   Darbyshire, Chris ^c  

^a BRUNEL UNIVERSITY   (United Kingdom)

^b GLASGOW CALEDONIAN UNIVERSITY   (United Kingdom)

^c UNIVERSITY OF NOTTINGHAM   (United Kingdom)

Author keywords

Caregiving; Dependent offspring; Future alternatives; Learning disability; Older carers; Parent carers

Indexed keywords

EID: 84873996064     PISSN: 13544187     EISSN: 14683156     Source Type: Journal    
DOI: 10.1111/j.1468-3156.2012.00729.x     Document Type: Article

References (35)

1. Arksey H., Beresford B., Glendinning C., Greco V. & Sloper T. (2007) Outcomes for parents with disabled children and carers of disabled or older adults: Similarities, differences and the implications for assessment practice. York, Social Policy Research Unit, University of York.
2. Bowey L. & McGlaughlin A. (2007) Older carers of adults with a learning disability confront the future: Issues and preferences in planning'. Br J Soc Work, 37: 39-54.
3. Brereton L. & Nolan M.R. (2003) Seeking partnerships between family and professional carers: stroke as a case in point. In: Nolan M.R., Lundh U., Grant G., Keady J., editors. Partnerships in family care: understanding the caregiving career. Maidenhead, Open University Press: 50-68.
4. Charmaz K. (2000) Grounded theory: objectivist and constructivist methods. In: Denzin N., Lincoln Y., editors. Handbook of qualitative research, 2nd edn. Thousand Oaks, CA, Sage: 509-35.
5. Charmaz K. (2006) Constructing grounded theory: a practical guide through qualitative analysis. Thousand Oaks, CA, Sage.
6. Chou Y.C., Pu C.Y., Kröger T. & Fu L.Y. (2010) Caring, employment, and quality of life: comparison of employed and non-employed mothers of adults with intellectual disability. Am J Intellect Dev Disabil, 115: 406-20.
7. Dillenburger K. & McKerr L. (2009) "40 years is an awful long time": parents caring for adult sons and daughters with disabilities. Behav Soc Issues, 18: 155-74.
8. Enable Scotland (2008) Living from day to day: a research project on older family carers of people with learning disabilities. Glasgow, Castle Douglas and District Branch and North Ayrshire Branch, Enable Scotland.
9. Foundation for People with Learning Disabilities (2005) Shaping the future together: a strategic planning tool for services supporting people with learning disabilities. London, Foundations for People with Learning Disabilities.
10. Frazier L.D., Hooker K., Johnson P. & Kaus C. (2000) Continuity and change in possible selves in later life: a 5-year longitudinal study. Basic Appl Soc Psychol, 22: 237-43.
11. Frazier L.D., Johnson P.M., Gonzalez G.K. & Kafka C.L. (2002) Psychosocial influences on possible selves: a comparison of three cohorts of older adults. Int J Behav Dev, 26: 308-17.
12. Glaser B.G. & Strauss A.L. (1967) The discovery of grounded theory: strategies for qualitative research. Chicago, IL, Aldine Press.
13. Grant G. & Ramcharan P. (2001) Views and experiences of people with intellectual disabilities and their families (2). The Family Perspective. J Appl Res Intellect Disabil, 14: 364-80.
14. Guba E.G. & Lincoln Y.S. (1989) Fourth generation evaluation. Newbury Park, CA, Sage Publications.
15. Hanson H., Nolan J., Magnusson L., Sennemark L., Johansson L. et al. (2006) COAT: the carers outcome agreement tool: a new approach to working with family carers. Getting Research into practice (GRIP) Report No.1. Project Report. Sheffield, University of Sheffield.
16. Hooker K. & Kaus C.R. (1992) Possible selves and health behaviors in later life. J Aging Health, 4: 390-411.
17. Hubert J. & Hollins S. (2000) Working with elderly carers of people with learning disabilities and planning for the future. Adv Psychiat Treat, 6: 41-8.
18. Johnston L. & Martin M. (2005) Older family carers and learning disabled adults cared for at home. Their views, experiences and thoughts on future care. South Lanarkshire, South Lanarkshire Council, Social Work Resources Adult Services.
19. Jokinen N.S. & Brown R.I. (2005) Family quality of life from the perspective of older parents. J Intellect Disabil Res, 49: 789-93.
20. Jones D.A. & Peters T.J. (1992) Caring for elderly dependents: effects on the carers' quality of life. Age Ageing, 21: 421-8.
21. Kelly B. (2003) Working together to support children who have intellectual disabilities, and their families. Children's Issues, 7: 50-5.
22. Lincoln Y.S. & Guba E.G. (1985) Naturalistic inquiry. London, Sage.
23. MacLellan M., Norris D., MacPherson K. & Flowerdew G. (2002) Age related transitions: older parents caring for adult sons/daughters with lifelong disabilities. Halifax, Nova Scotia, Mount Saint Vincent University.
24. Maykut P. & Morehouse R. (1994) Beginning qualitative research: a philosophic and practical guide. London, Falmer Press.
25. Nolan M., Grant G. & Keady J. (1996) Understanding family care. Buckingham, Open University Press.
26. Nolan M.R., Hanson E., Magnusson L. & Andersson B.A. (2003) Gauging quality in constructivist research. The Äldre Väst Sjuhärad model revisited. Qual Ageing, 4: 22-7.
27. Pinquart M. & Sörensen S. (2003) Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychiatry Aging, 18: 248-56.
28. Ramcharan P. & Grant G. (2002) Views and experiences of people with intellectual disabilities and their families (1). The user perspective. J Appl Res Intellect Disabil, 14: 348-64.
29. Roberto K.A. (1993) Family caregivers of ageing adults with disabilities: a review of the caregiving literature. In: Roberto K.A., editor. The elderly caregiver: caring for adults with developmental disabilities. Newbury Park, CA, Sage: 3-18.
30. Rodwell M. (1998) Social work constructivist research. New York, NY, Garland.
31. Scorgie K. & Sobsey D. (2000) Transformational outcomes associated with parenting children who have disabilities. Ment Retard, 38: 195-206.
32. Todd S. & Jones S. (2003) 'Mum's the word!': maternal accounts of dealing with the professional world. J Appl Res Intellect Disabil, 16: 229-44.
33. Todd S. & Shearn J. (1996) Time and the person: the impact of support services on the lives of parents of adults with learning disabilities. J Appl Res Intellect Disabil, 9: 40-60.
34. Weeks L.E., Nilsson T., Bryanton O. & Kozma A. (2009) Current and future concerns of older parents of sons and daughters with intellectual disabilities. J Policy Pract Intellect Disabil, 6: 180-8.
35. White N. & Hastings R.P. (2004) Social and professional support for parents of adolescents with severe intellectual disabilities. J Appl Res Intellect Disabil, 17: 181-90.