Moving towards Midlife Care as Negotiated Family Business: Accounts of people with intellectual disabilities and their families “Just getting along with their lives together”

References

• Australian Institute of Health and Welfare . 2002 . Unmet need for disability services. Effectiveness of funding and remaining shortfalls , Canberra , , Australia : Author .
   Google Scholar
• Australian Institute of Health and Welfare . 2005 . Disability support services 2003–2004, Cat Dis 40 , Canberra , , Australia : Author .
   Google Scholar
• Bigby , C. 2000 . Moving on without parents: Planning, transitions and sources of support for older adults with intellectual disabilities , Sydney : MacLennan & Petty Pty Ltd .
   Google Scholar
• Bigby , C. 2004 . Aging with a lifelong disability: Policy, program and practice issues for professionals , London : Jessica Kingsley .
   Google Scholar
• Bigby , C. and Ozanne , E. 2004 . Comparison of specialist and mainstream programs for older carers of adults with intellectual disability: Considerations for service development . Australian Social Work , 57 : 273 – 287 .
   Google Scholar
• Bigby , C. , Ozanne , E. and Gordon , M. 2002 . Facilitating transition: Elements of successful case management practice for older parents of adults with intellectual disability . Journal of Gerontological Social Work , 37 (3) : 25 – 44 .
   Google Scholar
• Blumer , H. 1969 . Symbolic interactionism: Perspective and method , Englewood Cliffs , NJ : Prentice‐Hall .
   Google Scholar
• Bogdan , R. and Biklen , S. 1992 . Qualitative research in education. An introduction to theory and methods , Needham Heights , MA : Allyn & Bacon .
   Google Scholar
• Charmaz , K. 2006 . Constructing grounded theory: A practical guide through qualitative analysis , London : Sage Publications .
   Google Scholar
• Crotty , M. 1998 . The foundations of social research: Meaning and perspective in the research process , St Leonards, NSW , , Australia : Allen & Unwin .
   Google Scholar
• Duck , S. , ed. 1997 . Handbook of personal relationships. Theory, research and interventions , (2nd ed.) , London : John Wiley and Sons Ltd .
   Google Scholar
• Duck , S. , West , L. and Acitelli , L. 1997 . “ Sewing the field: The tapestry of relationships in life and research ” . In Handbook of personal relationships. Theory, research and interventions , 2nd ed. , Edited by: Duck , S. 1 – 23 . London : John Wiley and Sons Ltd .
   Google Scholar
• Forbat , L. 2005 . Talking about care. Two sides to the story , Bristol : The Policy Press .
   Google Scholar
• Frank , A. 2005 . What is dialogical research, and why should we do it? . Qualitative Health Research , 15 (7) : 1 – 11 .
   Google Scholar
• Glaser , B. and Strauss , A. 1967 . The discovery of grounded theory: Strategies for qualitative research , Chicago , IL : Aldine Publishers .
   Google Scholar
• Goodley , D. 2004 . Researching life stories: Method, theory and analyses in a biographical age , London : Routledge Falmer .
   Google Scholar
• Grant , G. 1990 . Elderly parents with handicapped children: Anticipating the future . Journal of Aging Studies , 4 : 359 – 374 .
   Web of Science ®Google Scholar
• Grant , G. 2000 . “ Older family carers: Challenges, coping strategies and support ” . In Transitions in the lives of people with learning difficulties , Edited by: May , D. 177 – 193 . London : Jessica Kingsley .
   Google Scholar
• Grant , G. 2003 . “ Caring families: Their support or empowerment ” . In Reconceptualising work with carers. New directions for policy and practice , Edited by: Stalker , K. 96 – 116 . London : Jessica Kingsley .
   Google Scholar
• Grant , G. , Ramcharan , P. , McGrath , M. , Nolan , M. and Keady , J. 1998 . Rewards and gratifications among family caregivers: Towards a refined model of caring and coping . Journal of Intellectual Disability Research , 42 : 58 – 71 .
   PubMed Web of Science ®Google Scholar
• Grant , G. and Whittell , B. 2001 . Do families and care managers have a similar view of family coping? . Journal of Learning Difficulties , 5 : 111 – 120 .
   Google Scholar
• Grant , G. and Whittell , B. 2003 . “ Partnerships with families over the life course ” . In Partnerships in family care: Understanding the caregiving career , Edited by: Nolan , M. , Lundh , U. , Grant , G. and Keedy , J. 90 – 107 . Maidenhead : Open University Press .
   Google Scholar
• Guba , E. and Lincoln , Y. 2004 . “ Competing paradigms in qualitative research ” . In Approaches to qualitative research , Edited by: Hesse‐Biber , S. and Leavy , P. 17 – 38 . New York : Oxford University Press .
   Google Scholar
• Hayden , M. and Heller , T. 1997 . Support, problem‐solving/coping ability, and personal burden of younger and older caregivers of adults with mental retardation . Mental Retardation , 35 : 364 – 372 .
   PubMedGoogle Scholar
• Heller , T. and Factor , A. 1991 . Permanency planning for adults with mental retardation living with family caregivers . American Journal on Mental Retardation , 96 : 163 – 176 .
   PubMedGoogle Scholar
• Hesse‐Biber , S. and Leavy , P. 2006 . The practice of qualitative research , Thousand Oaks , CA : Sage Publications .
   Google Scholar
• Janicki , M. , McCallion , P. , Force , L. , Bishop , K. and LePore , P. 1998 . Area agency on aging and assistance for households with older carers of adults with a developmental disability . Journal of Aging and Social Policy , 10 (1) : 13 – 36 .
   PubMedGoogle Scholar
• Knox , M. , Mok , M. and Parmenter , T. 2000 . Working with the experts: Collaborative research with people with an intellectual disability . Disability & Society , 15 : 49 – 61 .
   Web of Science ®Google Scholar
• Llewellyn , G. 2003 . “ Family care decision‐making in later life: The future is now! ” . In Partnerships in family care: Understanding the caregiver career , Edited by: Nolan , M. , Lundh , U. , Grant , G. and Keady , J. 145 – 164 . Basingstoke : Open University Press .
   Google Scholar
• Llewellyn , G. , Gething , L. , Kendig , H. and Cant , R. 2004 . Older parent caregivers' engagement with the service system . American Journal on Mental Retardation , 109 : 379 – 396 .
   PubMedGoogle Scholar
• Lloyd , L. 2003 . “ Caring relationships: Looking beyond welfare categories of “carers” and “service users” . In Reconceptualising work with carers. New directions for policy and practice , Edited by: Stalker , K. 17 – 55 . London : Jessica Kingsley .
   Google Scholar
• Magrill , D. , Handley , P. , Gleeson , S. , Charles , D. and Steering Group . 1997 . The sharing caring project. Developing services for older carers of people with learning disabilities , Sheffield : The Sharing Caring Project .
   Google Scholar
• McDermott , S. , Valentine , D. , Anderson , D. and Thompson , S. 1997 . Parent of adults with mental retardation living in home and out of home: Caregiving burdens and gratifications . American Journal of Orthopsychiatry , 67 : 323 – 330 .
   PubMed Web of Science ®Google Scholar
• Miles , M. and Huberman , A. 1994 . Qualitative data analysis: An expanded sourcebook , (2nd ed.) , Thousand Oaks , CA : Sage Publications .
   Google Scholar
• Minichiello , V. , Aroni , R. , Timewell , E. and Alexander , L. 1995 . In‐depth interviewing: Principles, techniques, analysis , (2nd ed.) , Melbourne : Longman .
   Google Scholar
• Neuman , W. 2006 . Social research methods: Qualitative and quantitative approaches , (6th ed.) , Boston , MA : Allyn and Bacon .
   Google Scholar
• Plummer , K. 2001 . Documents of life 2: An invitation to a critical humanism , (2nd ed.) , London : Sage Publications .
   Google Scholar
• Prosser , H. 1998 . The future care plans of older adults with intellectual disabilities living at home with family carers . Journal of Applied Research in Intellectual Disabilities , 10 : 15 – 32 .
   Web of Science ®Google Scholar
• Punch , K. 2005 . Introduction to social research: Quantitative and qualitative approaches , London : Sage Publications .
   Google Scholar
• Richardson , A. and Ritchie , J. 1986 . Making the break: Parents perspectives on adults with mental handicap leaving home , London : King Edward's Hospital Fund .
   Google Scholar
• Ritzer , G. 2005 . Encyclopaedia of social theory , Thousand Oaks , CA : Sage Publications .
   Google Scholar
• Sandelowski , M. 1993 . Rigor or rigor mortis: The problem of rigor in qualitative research revisited . Advances in Nursing Science , 16 : 1 – 8 .
   PubMed Web of Science ®Google Scholar
• Sarason , B. and Duck , S. 2000 . Personal relationships: Implications for clinical and community psychology , London : John Wiley & Sons .
   Google Scholar
• Spencer , M. and Llewellyn , G. 2007 . “ Working things out together: A collaborative approach to supporting parents with intellectual disabilities ” . In Planning and support for people with intellectual disabilities: Issues for case managers and other professionals , Edited by: Bigby , C. , Fyffe , C. and Ozanne , E. 171 – 190 . Sydney/London : University of New South Wales Press/Jessica Kingsley .
   Google Scholar
• Strauss , A. and Corbin , J. 1990 . Basics of qualitative research. Grounded theory procedures and techniques , Thousand Oaks , CA : Sage Publications .
   Google Scholar
• Walmsley , J. 1996 . Doing what Mum wants me to do: Looking at family relationships from the point of view of adults with learning disabilities . Journal of Applied Research in Intellectual Disabilities , 9 : 324 – 341 .
   Web of Science ®Google Scholar
• Whistle , M. 1986 . Elderly parents of the developmentally disabled: Shouldering some of their burden . Aging , 354 : 26 – 27 .
   Google Scholar
• Williams , V. and Robinson , C. 2001 . More than one wavelength: Identifying, understanding and resolving conflicts of interest between people with intellectual disabilities and their cares . Journal of Applied Research in Intellectual Disabilities , 14 : 30 – 46 .
   Web of Science ®Google Scholar