Hostname: page-component-586b7cd67f-rdxmf Total loading time: 0 Render date: 2024-11-24T11:12:00.313Z Has data issue: false hasContentIssue false
  • English
  • Français

Views of family carers to the future accommodation and support needs of their relatives with intellectual disabilities

Published online by Cambridge University Press:  13 June 2014

Roy McConkey ,
Jayne McConaghie ,
Owen Barr  and
Paul Roberts
Roy McConkey
Affiliation:
School of Nursing, University of Ulster, Newtownabbey, Northern Ireland, BT37 0QB
Jayne McConaghie
Affiliation:
Institute of Nursing Research, University of Ulster, Newtownabbey, Northern Ireland, BT37 0QB
Owen Barr
Affiliation:
Institute of Nursing Research, University of Ulster, Newtownabbey, Northern Ireland, BT37 0QB
Paul Roberts
Affiliation:
Positive Futures, Northern Ireland
Get access Rights & Permissions [Opens in a new window]

Abstract

Objectives: The demand for places in supported accommodation is likely to rise due to the increasing longevity of people with intellectual disabilities and as their parents become unavailable or unable to care for them. However few attempts have been made to ascertain carer's views on alternative accommodation.

Method: Four studies were undertaken in Northern Ireland to ascertain carer's views using three different methods. In all, 387 carers participated with the response being greatest for individual interviews conducted in the family home and least for self-completed questionnaires and attendance at group meetings.

Results: The majority of carers envisaged the person continuing to be cared for within the family. The most commonly chosen out-of-home provision was in residential or nursing homes, living with support in a house of their own and in homes for small groups of people. Few carers chose living with another family. However only small numbers of carers envisaged alternative provision being needed in the next two years and few had made any plans for alternative living arrangements.

Conclusions: The implications for service planning are noted, primarily the need for individual reviews of future needs through person-centred planning; improved information to carers about various residential options and their differential benefits, along with more services aimed at improving the quality of life of people living with family carers. These need to be underpinned by a commitment of statutory agencies to partnership working with family carers. The implications for mental health services are noted.

Keywords

Family carersfuture needshousing and supportintellectual disabilities.
Type
Brief Reports
Information
Irish Journal of Psychological Medicine , Volume 23 , Issue 4 , December 2006 , pp. 140 - 144
Copyright
Copyright © Cambridge University Press 2006

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

1.Braddock, D., Emerson, E., Felce, D., Stancliffe, RJ.Living circumstances of children and adults with mental retardation or developmental disabilities in United States, Canada, England and Wales, and Australia. Mental Retardation and Developmental Disabilities Research Review, 2001, 37 (2), 155–154Google Scholar
2.Barron, S., Mulvany, F.National Intellectual Disability Database Committee Annual Report 2005. Dublin: Health Research Board.Google Scholar
3.Nolan, M., Walker, G., Nolan, J., Williams, S., Poland, F., Curran, M., Kent, B. (1996) Entry to care: positive choice or fait accompli? Developing a more proactive nursing response to the needs of older people and their carers. Journal of Advanced Nursing 1996; 24(2): 265–274.CrossRefGoogle ScholarPubMed
4.Heller, T.Factor, A.Aging family caregivers: support resources and changes in burden and placement desires. American Journal on Mental Retardation, 1993, 98 (5), 417–426.Google Scholar
5.Freedman, R.I., Krauss, M.W., Seltzer, M.M.Aging parents' residential plans for adult children with mental retardation. Mental Retardation, 1997, 35 (2), 114–1232.0.CO;2>CrossRefGoogle ScholarPubMed
6.Richardson, R., Ritchie, J.Making the break: Parents' views about adults with a mental handicap leaving the parental home. 1986, London: Kings Fund Centre.Google Scholar
7.Prosser., H. The future care plans of older adults with intellectual disabilities living at home with family carers. Journal of Applied Research in Intellectual Disabilities, 1997, 10(1), 15–32.CrossRefGoogle Scholar
8.Seltzer, M.M., Krauss, M., Walsh., P.N., Conliffe, C., Larson, B., Birbeck, G.Hong, J., Choi, S.C.Cross-national comparisons of ageing mothers of adults with intellectual disabilities. Journal of Intellectual Disability Research, 1995, 39 (6), 408–418.CrossRefGoogle ScholarPubMed
9.Simons, K. and Watson, D.The view from Arthur's Seat: Review of services for people with learning disabilities – a literature review of housing and support options beyond Scotland. 1999, Edinburgh: Scottish Executive Central research Unit.Google Scholar
10.Emerson, E., Robertson, J., Gregory, N., et al.The quality and costs of village communities, residential campuses and community-based residential services for people with learning disabilities. Tizard Learning Disability Review, 2000, 5 (1), 5–16.CrossRefGoogle Scholar
11.McConkey, R., McConaghie, J., Mezza, F. and Wilson, J.Moving from long-stay hospitals: the views of Northern Irish patients and relatives. Journal of Learning Disabilities, 2003, 7 (2), 78–93.CrossRefGoogle Scholar
12.McConkey, R. (2005) Fair shares? Supporting families caring for adult persons with intellectual disabilities. Journal of Intellectual Disability Research, 49, 600–612CrossRefGoogle ScholarPubMed
13.Sanderson, S., Kilbane, J. and Gitsham, N. Person-centred planning (PCP): A resource Guide. 2000. www.valuingpeople.gov.uk/documents/PCPResource.pdf.Google Scholar
14.Dodd, P., Dowling, S., Hollins, S. (2005) A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities. Journal of Intellectual Disability Research 49 (7), 537–543.CrossRefGoogle ScholarPubMed
15.Department of Health. Valuing people: A newstrategy for learning disability for the 21 st Century. 2001. London: Department of Health.Google Scholar
16.Mulvany, F., Barron, S. and McConkey, R. (2006) Residential provision for adult persons with intellectual disabilities in Ireland. Journal of Applied Research in Intellectual Disability (in press).Google Scholar
17.Emerson, E., Hatton, C.Residential supports for people with learning disabilities in 1997 in England. Tizard Learning Disability Review, 2000, 5 (1), 41–44.CrossRefGoogle Scholar
18.Walsh, P.N., Linehan, C., Hillery, J., Durkan, J., Emerson, E., Hatton, C., Robertson, J., Gregory, N., Kessissoglou, S., Hallam, A., Knapp, M. and Jaerbrink, K.Family views of the quality of residential supports. Journal of Applied Research in Intellectual Disabilities, 2001, 14(5), 292–309.CrossRefGoogle Scholar
19.Tossebro, J., Gustavsson, A. and Dyrendahl, G. (eds.) Intellectual disabilities in the Nordic Welfare States. 1996, Kristiansand: Norwegian Academic Press,Google Scholar
20.McConkey, R., Sowney, M., Milligan, V., Barr, O.Views of People with Intellectual Disabilities of Their Present and Future Living Arrangements. Journal of Policy and Practice in Intellectual Disabilities, 2005, 1 (2), 115–125CrossRefGoogle Scholar
21.McConkey, R., McConaghie, J., Roberts., P., King, D.Family Placement Schemes for adult persons with intellectual disabilities living with elderly carers. Journal of Learning Disabilities, 2004, 8 (4), 267–282.CrossRefGoogle Scholar