Older family-carers' views on the future accommodation needs of relatives who have an intellectual disability

International Journal of Social Welfare

Volumn 17, Issue 1, 2008, Pages 54-64

  Gilbert, Anthony ^a   Lankshear, Gloria ^a   Petersen, Alan ^a  

^a UNIVERSITY OF PLYMOUTH   (United Kingdom)

Author keywords

Housing; Intellectual learning disability; Older family carers; Qualitative research; Social services

Indexed keywords

EID: 36749015710     PISSN: 13696866     EISSN: 14682397     Source Type: Journal    
DOI: 10.1111/j.1468-2397.2007.00485.x     Document Type: Article

References (65)

1. Ager A, Myers F, Kerr P, Myles S, Green A (2001). Moving Home: Social integration for adults with intellectual disabilities resettling into community provision. Journal of Applied Research in Intellectual Disabilities 14: 392.
2. Australian Institute of Health and Welfare (2006). Disability and Ageing: Population Patterns and Implications. Canberra, Australian Institute of Health and Welfare.
3. Barry CA, Britten N, Barber N, Bradley C, Stevenson F (1999). Using Reflexivity to Optimise Teamwork in Qualitative Research. Qualitative Health Research 9: 26-44.
4. Bigby C (2004). Ageing with a Lifelong Disability. London, Jessica Kingsley.
5. Bochel C, Bochel H, Page D (1999). Housing: The foundation of community care? Health and Social Care in the Community 7: 492.
6. Corkish C, Heyman B (1998). The resettlement of people with severe learning difficulties. In: Heyman B, ed. Risk, Health and Health Care - A Qualitative Approach. London, Arnold.
7. Cummins RA, Lau ALD (2003). Community Integration or Community Exposure? A review and discussion in relation to people with intellectual disability. Journal of Applied Research in Intellectual Disabilities 16: 145.
8. Davies D, Dodd J (2002). Qualitative Research and the Question of Rigor. Qualitative Health Research 12: 279-289.
9. Department of Health (1995). Carers [Recognition and Services] Act. London, HMSO.
10. Department of Health (1999). Caring about Carers: A strategy for carers. London, HMSO.
11. Department of Health (2001a). Valuing People: A new strategy for learning disability for the 21st Century. London, Department of Health.
12. Department of Health (2001b). Family Matters - Counting Families In. London, Department of Health.
13. Department of Health (2003). Good practice guidelines in supporting older family-carers of people with learning disabilities. London, Department of Health.
14. Douglas DH (2004). The lived experience of loss: A phenomenological study. Journal of the American Psychiatric Nurses Association 10: 24-32.
15. Dudley Borough Council (2003). Dudley Learning Disability Partnership Board, Housing and Support Strategy. Available at http://www.dudley.gov.uk/health-social-care/documents-and-reports Last accessed 19/12/2006.
16. Englehardt J, Lutzer VD, Brubaker TH (1987). Parents of adults with developmental disabilities: Age and reasons for reluctance to use another caregiver. Lifestyles: A Journal of Changing Patterns 8: 47-54.
17. Esping-Andersen G (1990). The Three Words of Welfare Capitalism. Cambridge, Polity Press.
18. Essex EL, Seltzer MM, Krauss MW (1997). Residential transition of adults with mental retardation: Predictors of waiting list use and placement. American Journal on Mental Retardation 101: 613-629.
19. Factor A (2004). Ageing with a developmental disability. Presentation to the White House conference on Ageing. Rehabilitation Research and Training Centre on Ageing with a Developmental Disability. Chicago, University of Illinois.
20. Feinberg LF, Wolkwitz K, Goldstein C (2006). Ahead of the curve: emerging trends and practices in family care giver support. Washington DC, National Centre on Caregiving/Family Caregiver Alliance.
21. Foord M, Simic P (2001). A sustainable approach to planning housing and social care: If not now, when? Health and Social Care in the Community 9: 168-176.
22. Fujiura G, Yamaki K (2005). Data Trends and Policy Programme: The Demographic Status of Americans with Intellectual and Developmental Disabilities and Related Disabilities. Rehabilitation Research and Training Centre on Ageing with a Developmental Disability. Chicago, University of Illinois.
23. Grant G, Ramcharan P, McGrath M, Nolan M, Keady J (1998). Rewards and gratifications among family care givers: Towards a refined model of caring and coping. Journal of Intellectual Disability Research 42: 58-71.
24. Haley W, Perkins EA (2004). Current status and future directions in family caregiving and ageing people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities 1: 24-30.
25. Harker M, King N (1999). An ordinary home: Housing and support for people with learning disabilities. London, IDEA Publications.
26. Heller T, Factor A (2004). Older Adults with Developmental Disabilities and their Ageing Family Care Givers. Rehabilitation Research and Training Centre on Ageing with a Developmental Disability. Chicago, University of Illinois.
27. Heller T, Caldwell J, Factor A (2005a). Supporting Ageing Caregivers and Adults with Developmental Disabilities in Future Planning. Rehabilitation Research and Training Centre on Ageing with a Developmental Disability. Chicago, University of Illinois.
28. Heller T, Caldwell J, Factor A (2005b). The Future is Now. Rehabilitation Research and Training Centre on Ageing with a Developmental Disability. Chicago, University of Illinois.
29. Hogg J, Lambe L (1998). Older people with learning disabilities: A review of the literature on residential services and family care-giving. London, The Foundation for People with Learning Disabilities.
30. Hogg J, Lucchino R, Wang K, Janicki MP, Working Group (2000). Healthy ageing - adults with intellectual disability: Ageing and social policy. Geneva, WHO.
31. Holdsworth C (2004). Family Support During the Transition Out of the Parental Home in Britain, Spain and Norway. Sociology 38: 909-926.
32. Holman C, Meyer J, Cotter A (2004). The complexity of loss in continuing care institutions for older people: A review of the literature. Illness, Crisis & Loss 12: 38-51.
33. Kaufman AV, Adams JP, Campbell VA (1991). Permanency planning by older parents who care for adult children with mental retardation. Mental Retardation 29: 293-300.
34. King N, Harker M (2000). Living Alone or With Others - Housing and support for people with learning disabilities. London, The Foundation for People with Learning Disabilities/The Mental Health Foundation.
35. Koch T, Harrington A (1998). Reconceptualizing Rigour: The Case for Reflexivity. Journal of Advanced Nursing 28: 882-890.
36. Kokanovic R, Petersen A, Mitchell V, Hansen S (2001). Care-Giving and the Social Construction of 'Mental Illness' in Immigrant Communities. Perth WA, Eastern Perth Public and Community Health Unit and Murdoch University.
37. Lambe L, Hogg J (1995). Their Face to the Wind: Service developments for older people with learning disabilities in the Grampian region. Glasgow, Enable.
38. Lankshear G, Giarchi G (1994). Community and Residential Care in Devon: A Follow-Up Study to the 'Choice with Care' Study of 100 Care Management Referrals. Report to Devon Social Services, May 1994. Plymouth, Community Research Centre, University of Plymouth.
39. Lankshear G, Giarchi GG, Cox S (2000). Caring Options for Entering Employment. Full Report, January 2000. Plymouth, Community Research Centre, University of Plymouth.
40. Link G, Dize V, Folkemer D, Curran C (2006). Family Caregiver support: State facts at a glance. Denver Colorado, National Conference of State Legislatures.
41. Machin L, Small B (2004). Mapping grief; a study in practice using a quantitative and qualitative approach to exploring and addressing the range of responses to loss. Counselling, Psychotherapy and Research 4: 9-17.
42. Magrill D (1997). Crisis Approaching Sharing Caring Project. Sheffield, Sheffield Mencap.
43. Magrill D (2003). Planning for tomorrow: Learning disability partnership boards and older family carers of people with learning disabilities. London, Foundation for People with Learning Disabilities.
44. Marcus GE (1994). What Comes (Just) After 'Post'? The Case of Ethnography. In: Denzin N, Lincoln Y, eds. Handbook of Qualitative Research. Thousand Oaks, CA, Sage.
45. Mason J (1996). Qualitative Researching. London, Sage.
46. McConkey R, Adams L (2000). Do short break services for children with learning disability match family needs and preferences? Child: Care, Health and Development 26: 429-444.
47. McDonald P (1997). Older people and their families: Issues for policy. In: Borowski A, Encel S, Ozanne E, eds. Aging and Social Policy in Australia. Cambridge, Cambridge University Press.
48. McGrother CW, Hauck A, Bhaumik S, Thorp C, Taub N (1996). Community care for adults with learning disability and their carers: Needs and outcomes from the Leicestershire register. Journal of Intellect Disability Research 40: 183-190.
49. Mencap (2002). The Housing Time Bomb. London, Mencap.
50. Moyle W, Edwards H, Clinton M (2002). Living with loss: Dementia and the family caregiver. Australian Journal of Advanced Nursing 19: 25-31.
51. Newson PR (2003). Relocation to the care home: A peculiar form of loss. Nursing and Residential Care 5: 288-290.
52. Norris N (1997). Error, Bias and Validity in Qualitative Research. Educational Research 5: 172-176.
53. Rajnovich B, Keefe J, Fast J (2005). Supporting Caregivers of Dependent Adults in the 21st Century. Healthy Balance Research Programme, Maritime Data Centre for Aging Research and Policy Analysis. Halifax, Nova Scotia, Mount St Vincent University.
54. Seltzer M, Krauss M, (2005). Ageing with Autism and Intellectual Disabilities: Challenges and rewards of care giving by older parents and adult siblings. Rehabilitation Research and Training Centre on Ageing with a Developmental Disability. Chicago, University of Illinois.
55. Seltzer M, Krauss M, Magana S (2005). Family Involvement by Ageing Parents and Adult Siblings with Intellectual Disabilities Living in Residential Settings. Rehabilitation Research and Training Centre on Ageing with a Developmental Disability. Chicago, University of Illinois.
56. Smith GC, Tobin SSY, Fullmer EM (1995). Elderly mothers caring at home for offspring with mental retardation: A model of permanent planning. American Journal of Mental Retardation 99: 487-499.
57. Spencer L, Ritchie J, Dillon L (2003). Quality in Qualitative Evaluation: A framework for assessing research evidence. London, National Centre for Social Research, Government Chief Social Researcher's Office, Cabinet Office (http://www.natcen.ac.uk) Last accessed 15/06/2004.
58. Thompson D, Wright S (2001). Misplaced and Forgotten: People with Learning Disabilities in Residential Services for Older People. London, The Foundation for People with Learning Disabilities.
59. Todd S, Jones S (2003). 'Mum's the Word!': Maternal Accounts of Dealings with the Professional World. Journal of Applied Research in Intellectual Disabilities 16: 229.
60. Vagg J (1998). A Lifetime of Caring. In: Thompson T, Mathias P, eds. Standards and Learning Disability (2nd edition). London, Baillière Tindall.
61. Walker C, Walker A (1998). Uncertain Futures: People with learning disabilities and ageing family-carers. Brighton, Pavilion.
62. Walmsley J (1993). Contradictions in caring: Reciprocity and interdependence. Disability, Handicap and Society 8: 129-141.
63. Wertheimer A (2005). Today and Tomorrow: Findings of the Growing Older with Learning Disabilities Programme. London, Foundation for People with Learning Disabilities.
64. WHO [World Health Organisation] (2000). Aging and Intellectual Disability - Improving longevity and promoting healthy aging: Summative report. Geneva, WHO.
65. Williams V, Robinson C (2001). 'He will finish up caring for me': People with learning disability and mutual care. British Journal of Learning Disability 29: 56-62.