Hostname: page-component-78c5997874-j824f Total loading time: 0 Render date: 2024-11-09T07:05:51.132Z Has data issue: false hasContentIssue false

Care-giving dynamics and futures planning among ageing parents of adult offspring with intellectual disability

Published online by Cambridge University Press:  21 March 2018

RUTH WALKER*
Affiliation:
Disability and Community Inclusion, College of Nursing and Health Sciences, Flinders University, Adelaide, Australia.
CLAIRE HUTCHINSON
Affiliation:
Disability and Community Inclusion, College of Nursing and Health Sciences, Flinders University, Adelaide, Australia.
*
Address for correspondence: Ruth Walker, Disability and Community Inclusion, College of Nursing and Health Sciences, Flinders University, GPO Box 2100, Adelaide SA 5001, Australia E-mail: [email protected]

Abstract

The number of older parents ageing in tandem with their adult children with intellectual disability (ID) is increasing. This unique situation calls for greater research that investigates how older parents experience this extended care-giving role, including the extent to which they are engaging in futures planning. Participants were recruited via disability service providers in South Australia. Using the theoretical perspective of hermeneutic phenomenology to understand lived experiences, semi-structured in-depth interviews were carried out with older parents (N = 17, mean age 70 years). Six offspring were living in the family home while the remainder were in supported accommodation. Main themes to emerge from the data were: (a) perpetual parenting, (b) costs and rewards and (c) planning to plan. Parents were providing care across a range of areas, regardless of whether their offspring lived at home or in supported accommodation. While aware of the need to plan for the future, most did not have a firm plan in place. Parents are providing a high level of support to their adult children with ID regardless of whether they live in supported accommodation or the family home. While some have started to think about future care arrangements, most appear unclear over what the future holds.

Type
Article
Copyright
Copyright © Cambridge University Press 2018 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Abramson, T. A. 2015. Older adults: the ‘Panini Sandwich’ generation. Clinical Gerontologist, 38, 4, 251–67.Google Scholar
Aneshensel, C. A., Pearlin, L. I., Mullan, J. T., Zarit, S. H. and Whitlatch, C. J. 1995. Profiles in Caregiving: The Unexpected Career. Academic Press, San Diego.Google Scholar
ASLaRC (Aged Services Unit) 2011. Futures planning for older carers of adults with disabilities. Report to the Department of Family and Community Services NSW, Ageing Disability and Home Care, June, Sydney, NSW.Google Scholar
Australian Bureau of Statistics 2012. Australian Social Trends – December 2012: Older Carers. ABS Catalogue Number 4102.0, Australian Bureau of Statistics, Canberra.Google Scholar
Australian Government Department of Social Services 2014. Planning for the Future of People with Disability: Improving the Lives of Australians. Commonwealth of Australia, Canberra.Google Scholar
Baumbusch, J., Mayer, S., Phinney, A. and Baumbusch, S. 2017. Aging together: caring relations in families of adults with intellectual disabilities. The Gerontologist, 57, 2, 341–7.Google Scholar
Bibby, R. 2012. ‘I hope he goes first’: exploring determinants of engagement in future planning for adults with a learning disability living with ageing parents. What are the issues? A literature review. British Journal of Learning Disabilities, 41, 2, 94105.Google Scholar
Braithwaite, V. 1992. Caregiving burden making the concept scientifically useful and policy relevant. Research on Aging, 14, 1, 327.Google Scholar
Brennan, D., Murphy, R., McCallion, P. and McCarron, M. 2017. ‘What's going to happen when we're gone?’ Family caregiving capacity for older people with intellectual disability in Ireland. Journal of Applied Research in Intellectual Disabilities. Published online 30 June 2017, doi:10.1111/jar.12379.Google Scholar
Cairns, D., Tolson, D., Brown, J. and Darbyshire, C. 2013. 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, 41, 1, 7382.Google Scholar
Cohen, M. Z. and Omery, A. 1994. Schools of phenomenology: implications for research. Critical Issues in Qualitative Research Methods, 2, 136–53.Google Scholar
Dillenburger, K. and McKerr, L. 2011. ‘How long are we able to go on?’ Issues faced by older family caregivers of adults with disabilities. British Journal of Learning Disabilities, 39, 1, 2938.Google Scholar
Elder, G. H., Johnson, M. K. and Crosnoe, R. 2003. The emergence and development of life course theory. In Mortimer, J. T. and Shanahan, M. J. (eds), Handbook of the Life Course. Kluwer Academic/Plenum, New York, 319.Google Scholar
Ezzy, D. 2002. Coding data and interpreting text: methods of analysis. In Ezzy, D. (ed.), Qualitative Analysis: Practice and Innovation. Allen and Unwin, Crow's Nest, Australia, 80110.Google Scholar
Grant, G. 2007. Invisible contributions in families with children and adults with intellectual disabilities. Canadian Journal on Aging/La Revue canadienne du vieillissement, 26, 1, 1526.Google Scholar
Greenfield, E. A. and Marks, N. F. 2006. Linked lives: adult children's problems and their parents’ psychological and relational well-being. Journal of Marriage and the Family, 68, 2, 442–54.Google Scholar
Heller, T. and Caldwell, J. 2006. Supporting aging caregivers and adults with developmental disabilities in future planning. Mental Retardation, 44, 3, 189202.Google Scholar
Hole, R. D., Stainton, T. and Wilson, L. 2013. Ageing adults with intellectual disabilities: self-advocates’ and family members’ perspectives about the future. Australian Social Work, 66, 4, 571–89.Google Scholar
Iacono, T., Evans, E., Davis, A., Bhardwaj, A., Turner, B., Torr, J. and Trollor, J. N. 2016. Family caring of older adults with intellectual disability and coping according to loci of responsibility. Research in Developmental Disabilities, 57, 170–80.Google Scholar
Knox, M. and Bigby, C. 2007. Moving towards midlife care as negotiated family business: accounts of people with intellectual disabilities and their families ‘Just getting along with their lives together’. International Journal of Disability, Development and Education, 54, 3, 287304.Google Scholar
Lopez, K. A. and Willis, D. G. 2004. Descriptive versus interpretive phenomenology: their contributions to nursing knowledge. Qualitative Health Research, 14, 5, 726–35.Google Scholar
Miller, D. A. 1981. The ‘sandwich' generation: adult children of the aging. Social Work, 26, 5, 419–23.Google Scholar
Nolan, M., Grant, G. and Keady, J. 1996. Understanding Family Care: A Multidimensional Model of Caring and Coping. Open University Press, Buckingham, UK.Google Scholar
Petterson, B., Bourke, J., Leonard, H., Jacoby, P. and Bower, C. 2007. Co-occurrence of birth defects and intellectual disability. Paediatric and Perinatal Epidemiology, 21, 1, 6575.Google Scholar
Pryce, L., Tweed, A., Hilton, A. and Priest, H. M. 2015. Tolerating uncertainty: perceptions of the future for ageing parent carers and their adult children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 30, 1, 8496.Google Scholar
Raina, P., O'Donnell, M., Schwellnus, H., Rosenbaum, P., King, G., Brehaut, J., Russell, D., Swinton, M., King, S., Wong, M., Walter, S. D. and Wood, E. 2004. Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatrics, 4, 1, 1.Google Scholar
Rapley, T. 2004. Interviews. In Seale, C., Gobo, G., Gubrium, J. and Silverman, D. (eds), Qualitative Research Practice. Sage, London, 1533.Google Scholar
Ryan, A., Taggart, L., Truesdale-Kennedy, M. and Slevin, E. 2014. Issues in caregiving for older people with intellectual disabilities and their ageing family carers: a review and commentary. International Journal of Older People Nursing, 9, 3, 217–26.Google Scholar
Singer, G. H. 2006. Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. American Journal on Mental Retardation, 111, 3, 155–69.Google Scholar
Soottipong Gray, R., Hahn, L., Thapsuwan, S. and Thongcharoenchupong, N. 2016. Strength and stress: positive and negative impacts on caregivers for older adults in Thailand. Australasian Journal on Ageing, 35, 2, E712.Google Scholar
Strauss, A. and Corbin, J. M. (eds) 1998. Basics of Qualitative Research. Second edition, Sage, Thousand Oaks, California.Google Scholar
Thompson, D., Ryrie, I. and Wright, S. 2004. People with intellectual disabilities living in generic residential services for older people in the UK. Journal of Applied Research in Intellectual Disabilities, 17, 2, 101–8.Google Scholar
Torr, J., Strydom, A., Patti, P. and Jokinen, N. 2010. Aging in Down syndrome: morbidity and mortality. Journal of Policy and Practice in Intellectual Disabilities, 7, 1, 7081.Google Scholar
Walker, C. and Ward, C. 2013. Growing older together: ageing and people with learning disabilities and their family carers. Tizard Learning Disability Review, 18, 3, 112–9.Google Scholar
Walker, R. and Hutchinson, C. 2017. Planning for the future among older parents’ of adult offspring with intellectual disability living at home and in the community: a systematic review of qualitative studies. Journal of Intellectual & Developmental Disability. Published online 18 June 2017, doi:10.3109/13668250.2017.1310823.Google Scholar