Staff experiences of participation in everyday life of older people with intellectual disability who live in group homes

References

• Andersson, L. 2008. Ålderism [Ageism]. Lund: Studentlitteratur.
   Google Scholar
• Arvidsson, G., and H. Jonsson. 2006. “The Impact of Time Aids on Independence and Autonomy in Adults with Developmental Disabilities.” Occupational Therapy International 13 (3): 160–175. doi:10.1002/oti.215.
   PubMedGoogle Scholar
• Ashman, B., J. Ockenden, J. Beadle-Brown, and J. Mansell. 2010. Person-centred Active Support. A Handbook. Brighton: Pavilion.
   Google Scholar
• Bigby, C. 2004. Ageing with a Lifelong Disability. A Guide to Practice, Program and Policy Issues for Human Services Professionals. London: Jessica Kingsley.
   Google Scholar
• Bigby, C. 2005. “Comparative Program Options for Aging People with Intellectual Disabilities.” Journal of Policy and Practice in Intellectual Disabilities 2 (2): 75–85. doi:10.1111/j.1741-1130.2005.00019.x.
   Google Scholar
• Bigby, C., M. Knox, J. Beadle-Brown, T. Clement, and J. Mansell. 2012. “Uncovering Dimensions of Culture in Underperforming Group Homes for People with Severe Intellectual Disability.” Intellectual and Developmental Disabilities 50 (6): 452–467. doi:10.1352/1934-9556-50.06.452.
   PubMed Web of Science ®Google Scholar
• Bigby, C., R. Webber, B. Bowers, and B. McKenzie-Green. 2008. “A Survey of People with Intellectual Disabilities Living in Residential Aged Care Facilities in Victoria.” Journal of Intellectual Disability Research 52 (5): 404–414. doi:10.1111/j.1365-2788.2007.01040.x.
   PubMed Web of Science ®Google Scholar
• Bigby, C., N. J. Wilson, S. Balandin, and R. J. Stancliffe. 2011. “Disconnected Expectations: Staff, Family, and Supported Employee Perspectives about Retirement.” Journal of Intellectual and Developmental Disability 36 (3): 167–174. doi:10.3109/13668250.2011.598852.
   PubMed Web of Science ®Google Scholar
• Buys, L., R. Aird, and E. Miller. 2012. “Active Ageing among Older Adults with Lifelong Intellectual Disabilities: The Role of Familial and Nonfamilial Social Networks.” Families in Society: The Journal of Contemporary Social Services 93 (1): 55–64. doi:10.1606/1044-3894.4179.
   Web of Science ®Google Scholar
• Buys, L., G. Boulton-Lewis, J. Tedman-Jones, H. Edwards, M. Knox, and C. Bigby. 2008. “Research: Issues of Active Ageing: Perceptions of Older People with Lifelong Intellectual Disability.” Australasian Journal of Ageing 27 (2): 67–71. doi:10.1111/j.1741-6612.2008.00287.x.
   PubMed Web of Science ®Google Scholar
• Clement, T., and Bigby, C. 2010. Group Homes for People with Intellectual Disabilities: Encouraging Inclusion and Participation. London: Jessica Kingsley.
   Google Scholar
• Council of the European Union. 2012. Council Declaration on the European Year for Active Ageing and Solidarity between Generations (2012): The Way Forward. EPSCO, 17468/12. Brussels: Council of the European Union.
   Google Scholar
• Doody, C. M., K. Markey, and O. Doody. 2013. “The Experiences of Registered Intellectual Disability Nurses Caring for the Older Person with Intellectual Disability.” Journal of Clinical Nursing 22 (7–8): 1112–1123. doi:10.1111/jocn.12020.
   PubMed Web of Science ®Google Scholar
• Dusseljee, J. C. E., P. M. Rijken, M. Cardol, L. M. G. Curfs, and P. P. Groenewegen. 2011. “Participation in Daytime Activities among People with Mild or Moderate Intellectual Disability.” Journal of Intellectual Disability Research 55 (1): 4–18. doi:10.1111/j.1365-2788.2010.01342.x.
   PubMed Web of Science ®Google Scholar
• Ellison, C., A. White, and L. Chapman. 2011. “Avoiding Institutional Outcomes for Older Adults Living with Disability: The Use of Community-based Aged Care Supports.” Journal of Intellectual and Developmental Disability 36 (3): 175–183. doi:10.3109/13668250.2011.597377.
   PubMed Web of Science ®Google Scholar
• Ericsson, K. 2002. “From Institutional Life to Community Participation. Ideas and Realities Concerning Support to Persons with Intellectual Disability.” PhD diss., Uppsala University.
   Google Scholar
• Fahey-McCarthy, E., M. McCarron, K. Connaire, and P. McCallion. 2009. “Developing an Education Intervention for Staff Supporting Persons with an Intellectual Disability and Advanced Dementia.” Journal of Policy and Practice in Intellectual Disabilities 6 (4): 267–275. doi:10.1111/j.1741-1130.2009.00231.x.
   Web of Science ®Google Scholar
• Felce, D., K. Lowe, and E. Jones. 2002. “Staff Activity in Supported Housing Services.” Journal of Applied Research in Intellectual Disabilities 15 (4): 388–403. doi:10.1046/j.1468-3148.2002.00130.x.
   Web of Science ®Google Scholar
• Giorgi, A. 2009. The Descriptive Phenomenological Methods in Psychology. A Modified Husserlian Approach. Pittsburgh, PA: Duquense University Press.
   Google Scholar
• Goffman, E. 1961. Asylums. Essays on the Social Situation of Mental Patients and Other Inmates. New York: Anchor Books.
   Google Scholar
• Government Office of Sweden. 2013. “Objectives and Priorities for the Disability Area.” Accessed November 1. http://www.government.se/sb/d/15472/a/184236.
   Google Scholar
• Hammel, J. 2000. “Assistive Technology and Environmental Intervention (AT-EI) Impact on the Activity and Life Roles of Aging Adults with Developmental Disabilities: Findings and Applications for Practice.” Physical & Occupational Therapy in Geriatrics 18: 37–58.
   Google Scholar
• Hammel, J., J.-S. Lai, and T. Heller. 2002. “The Impact of Assistive Technology and Environmental Interventions on Function and Living Situation Status with People Who Are Ageing with Developmental Disabilities.” Disability and Rehabilitation 24 (1–3): 93–105. doi:10.1080/09638280110063850.
   PubMed Web of Science ®Google Scholar
• Hemmingsson, H., and H. Jonsson. 2005. “An Occupational Perspective on the Concept of Participation in the International Classification of Functioning, Disability and Health – Some Critical Remarks.” American Journal of Occupational Therapy 59 (5): 569–576. doi:10.5014/ajot.59.5.569.
   PubMed Web of Science ®Google Scholar
• Higgins, L., and J. Mansell. 2009. “Quality of Life in Group Homes and Older Persons’ Homes.” British Journal of Learning Disabilities 37 (3): 207–212. doi:10.1111/j.1468-3156.2009.00550.x.
   Web of Science ®Google Scholar
• Holland, A. J. 2000. “Ageing and Learning Disability.” British Journal of Psychiatry 176 (1): 26–31. doi:10.1192/bjp.176.1.26.
   PubMed Web of Science ®Google Scholar
• Hurst, J. 2009. “The Older Adult and Life Changes.” In Occupational Therapy for People with Learning Disabilities. A Practical Guide, edited by J. Goodman, J. Hurst, and C. Locke, 183–193. Edinburgh: Churchill Livingstone/Elsevier.
   Google Scholar
• Hutchings, B. L., R. V. Olsen, and H. J. Moulton. 2008. “Environmental Evaluations and Modifications to Support Aging at Home with a Developmental Disability.” Journal of Housing for the Elderly 22 (4): 286–310. doi:10.1080/02763890802458445.
   Google Scholar
• Ingvaldsen, A. K., and S. Balandin. 2011. “‘If We Are Going to Include Them We Have to Do It before We Die’: Norwegian Seniors’ Views of including Seniors with Intellectual Disability in Senior Centers.” Journal of Applied Research in Intellectual Disabilities 24 (6): 583–593. doi:10.1111/j.1468-3148.2011.00636.x.
   Web of Science ®Google Scholar
• Innes, A., L. McCabe, and K. Watchman. 2012. “Caring for Older People with an Intellectual Disability: A Systematic Review.” Maturitas 72 (4): 286–295. doi:10.1016/j.maturitas.2012.05.008.
   PubMed Web of Science ®Google Scholar
• Jeppsson Grassman, E., and A. Whitaker. 2013. “Ageing with Disability: An Introduction.” In Ageing with Disability. A Lifecourse Perspective, edited by E. Jeppsson Grassman and A. Whitaker, 1–15. Bristol: Policy Press.
   Google Scholar
• Judge, J., R. Walley, B. Anderson, and R. Young. 2010. “Activity, Aging, and Retirement: The Views of a Group of Scottish People with Intellectual Disabilities.” Journal of Policy and Practice in Intellectual Disabilities 7 (4): 295–301. doi:10.1111/j.1741-1130.2010.00279.x.
   Web of Science ®Google Scholar
• Kåhlin, I., A. Kjellberg, C. Nord, and J.-E. Hagberg. 2013. “Lived Experiences of Ageing and Later Life in Older People with Intellectual Disabilities.” Ageing and Society FirstView Articles: 1–27. doi:10.1017/So144X13000949.
   Web of Science ®Google Scholar
• Kemp, B. J. 2005. “What the Rehabilitation Professional and the Consumer Need to Know.” Physical Medicine and Rehabilitation Clinics of North America 16 (1): 1–18. doi:10.1016/j.pmr.2004.06.009.
   PubMedGoogle Scholar
• Kjellberg, A. 2002. “Participation – Ideology and Everyday Life. How to Understand the Experiences of Persons with Learning Disabilities.” PhD diss., Linköping University.
   Google Scholar
• Kozma, A., J. Mansell, and J. Beadle-Brown. 2009. “Outcomes in Different Residential Settings for People with Intellectual Disability: A Systematic Review.” American Journal on Intellectual and Developmental Disabilities 114 (3): 193–222. doi:10.1352/1944-7558-114.3.193.
   PubMedGoogle Scholar
• Kramer, J., P. Bowyer, and G. Kielhofner. 2008. “The Model of Human Occupation, the ICF, and the Occupational Therapy Practice Framework: Connections to Support Best Practice around the World.” In Model of Human Occupation. Theory and Application, 4th ed., edited by G. Kielhofner, 519–531. Philadelphia, PA: Lippincott Williams & Wilkins.
   Google Scholar
• Kvale, S. 1996. Interviews. An Introduction to Qualitative Research Interviewing. London: Sage.
   Google Scholar
• Lawton, M., and L. Nahemow 1973. “Ecology and the Aging Process.” In Psychology of Adult Development and Aging, edited by C. Eidsdorfer and M. Lawton, 619–674. Washington, DC: American Psychological Association.
   Google Scholar
• Lifshitz, H. 2002. “Later Life Planning Training Program: A Pre-test Assessment in Israel.” Journal of Gerontological Social Work 37 (3–4): 87–103. doi:10.1300/J083v37n03_07.
   Google Scholar
• Mallander, O. 1999. “De hjälper oss till rätta. Normaliseringsarbete, självbestämmande och människor med psykisk utvecklingsstörning [They Help Us Out – Normalization Work, Self-determination and People with Learning Disabilities].” PhD diss., Lund University.
   Google Scholar
• Mansell, J., and J. Beadle-Brown. 2012. Active Support. Enabling and Empowering People with Intellectual Disabilities. London: Jessica Kingsley.
   Google Scholar
• McDonald, K. E., C. A. Kidney, and M. Patka. 2013. “‘You Need to Let Your Voice Be Heard’: Research Participants’ Views On Research.” Journal of Intellectual Disability Research 57 (3): 216–225. doi:10.1111/j.1365-2788.2011.01527.x.
   PubMed Web of Science ®Google Scholar
• Mirza, M., and J. Hammel. 2009. “Consumer-directed Goal Planning in the Delivery of Assistive Technology Services for People Who Are Ageing with Intellectual Disabilities.” Journal of Applied Research in Intellectual Disabilities 22 (5): 445–457. doi:10.1111/j.1468-3148.2009.00495.x.
   Web of Science ®Google Scholar
• Molin, M. 2004. “Delaktighet inom handikappområdet – en begreppsanalys [Participation in Disability Domains – A Conceptual Analysis].” In Delaktighetens språk [The Language of Participation], edited by A. Gustavsson, 61–81. Lund: Studentlitteratur.
   Google Scholar
• Patton, M. Q. 2002. Qualitative Research & Evaluation Methods, 3rd ed. London: Sage.
   Google Scholar
• Priestley, M. 2003. Disability. A Life Course Approach. Cambridge, MA: Polity Press.
   Google Scholar
• Putnam, M. 2002. “Linking Aging Theory and Disability Models: Increasing the Potential to Explore Aging with Physical Impairment.” The Gerontologist 42 (6): 799–806. doi:10.1093/geront/42.6.799.
   PubMed Web of Science ®Google Scholar
• Race, D. 2007. Intellectual Disability. Social Approaches. New York: Open University Press.
   Google Scholar
• Schalock, R. L., S. A. Borthwick-Duffy, V. J. Bradley, W. H. E. Buntinx, D. L. Coulter, E. M. Craig, S. C. Gomez, et al. 2010. Intellectual Disability: Definition, Classification, and Systems of Supports, 11th ed. Washington, DC: American Association of Intellectual and Developmental Disabilities.
   Google Scholar
• Schuengel, C., S. Kef, S. Damen, and M. Worm. 2010. “People Who Need People: Attachment and Professional Caregiving.” Journal of Intellectual Disability Research 54 (Suppl. 1): 38–47. doi:10.1111/j.1365-2788.2009.01236.x.
   PubMed Web of Science ®Google Scholar
• SFS (Svensk författningssamling) [Swedish Code of Statues] 1993:387. Lagen om stöd och service till vissa funktionshindrade [The Act Concerning Support and Service for Persons with Certain Functional Impairments]. Stockholm: Swedish Government.
   Google Scholar
• Socialstyrelsen. 2012. Official Statistics of Sweden. Statistics – Social Welfare. Persons with Certain Functional Impairments – Measures Specified by LSS 2011. Stockholm: Socialstyrelsen.
   Google Scholar
• Swedish Research Council. 2011. Good Research Practice. Stockholm: Swedish Research Council.
   Google Scholar
• Taylor, S. J., and S. Bogdan. 1998. Introduction to Qualitative Research Methods. A Guidebook and Resource. 3rd ed. New York: John Wiley and Sons.
   Google Scholar
• Vessby, K., and A. Kjellberg. 2010. “Participation in Occupational Therapy Research: A Literature Review.” British Journal of Occupational Therapy 73 (7): 319–326. doi:10.4276/030802210X12759925544380.
   Web of Science ®Google Scholar
• Webber, R., B. Bowers, and C. Bigby. 2010. “Hospital Experiences of Older People with Intellectual Disability: Responses of Group Home Staff and Family Members.” Journal of Intellectual and Developmental Disability 35 (3): 155–164. doi:10.3109/13668250.2010.491071.
   PubMed Web of Science ®Google Scholar
• Webber, R., B. Bowers, and B. McKenzie-Green. 2010. “Staff Responses to Age-related Health Changes in People with an Intellectual Disability in Group Homes.” Disability & Society 25 (6): 657–671. doi:10.1080/09687599.2010.505736.
   Web of Science ®Google Scholar
• Wennberg, B., and A. Kjellberg. 2010. “Participation when Using Cognitive Assistive Devices - from the Perspective of People with Intellectual Disabilities.” Occupational Therapy International 17 (4): 168–176. doi:10.1002/oti.296.
   PubMed Web of Science ®Google Scholar
• World Health Organization. 2001a. “Healthy Ageing - Adults with Intellectual Disabilities: Summative Report.” Journal of Applied Research in Intellectual Disabilities 14 (3): 256–275. doi:10.1046/j.1468-3148.2001.00071.x.
   Web of Science ®Google Scholar
• World Health Organization. 2001b. International Classification of Functioning, Disability and Health (ICF). Geneva: World Health Organization.
   Google Scholar
• World Health Organization. 2002. Active Ageing. A Policy Framework. Geneva: World Health Organization.
   Google Scholar
• World Health Organization. 2013. “Disability and Health.” Fact Sheet No. 352. Accessed November 1. http://www.who.int/mediacentre/factsheets/fs352/en/.
   Google Scholar