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Research Article

“I have a good life”: the meaning of well-being from the perspective of young adults with Down syndrome

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Pages 1290-1298 | Received 14 Sep 2012, Accepted 09 Oct 2013, Published online: 28 Nov 2013

References

  • Bittles AH, Glasson EJ. Clinical, social, and ethical implications of changing life expectancy in Down syndrome. Dev Med Child Neurol 2004;46:282–6
  • Leonard S, Bower C, Petterson B, Leonard H. Medical aspects of school-aged children with Down syndrome. Dev Med Child Neurol 1999;41:683–8
  • Thomas K, Girdler S, Bourke J, et al. Overview of health issues in school-aged children with Down syndrome. Int Rev Res Ment Retard 2010;39:67–106
  • Bittles AH, Bower C, Hussain R, Glasson EJ. The four ages of Down syndrome. Eur J Publ Health 2006;17:221–5
  • McIntyne LL, Kraemer BR, Blacher J, Simmerman S. Quality of life for young adults with severe intellectual disability: mothers’ thoughts and reflections. J Intellect Dev Disabil 2004;29:131–46
  • Neece CL, Kraemer BR, Blacher J. Transition satisfaction and family well being among parents of young adutls with severe intellectual disability. Intellect Dev Disabil 2009;49:31–43
  • Kiefer RA. An integrative review of the concept of well-being [corrected] [published erratum appears in HOLISTIC NURS PRACT 2010 Nov–Dec;24:332]. Holist Nurs Pract 2008;22:244–54
  • McDougall J, Wright V, Rosenbaum P. The ICF model of functioning and disability: incorporating quality of life and human development. Dev Neurorehabil 2010;13:204–11
  • Fattore T, Mason J, Watson E. When children are asked about their well-being: towards a framework for guiding policy. Child Indicators Res 2009;2:57–77
  • Van Naarden Braun K, Yeargin-Allsopp M, Lollar D. Activity limitations among young adults with developmental disabilities: a population-based follow-up study. Res Dev Disabil 2009;30:179–91
  • Foley K-R, Dyke P, Girdler S, et al. Young adults with intellectual disability transitioning from school to post-school: a literature review framed within the ICF. Disabil Rehabil 2012;34:1747–64
  • Carr J. The everyday life of adults with Down syndrome. J Appl Res Intellect Disabil 2008;21:389–97
  • Docherty J, Reid K. ‘What’s the next stage?’ Mothers of young adults with Down syndrome explore the path to independence: a qualitative investigation. J Appl Res Intellect Disabil 2009;22:458–67
  • Oates A, Bebbington A, Bourke J, et al. Leisure participation for school-aged children with Down syndrome. Disabil Rehabil 2011;33:1880–9
  • Lippold T, Burns J. Social support and intellectual disabilities: a comparison between social networks of adults with intellectual disability and those with physical disability. J Intellect Disabil Res 2009;53:463–73
  • Laragy C. Self-determination within Australian school transition programmes for students with a disability. Disabil Soc 2004;19:519–30
  • Jain R, David C, Ragas R. Down syndrome: still a social stigma. Am J Perinatol 2002;19:99–108
  • Swain J, Heyman B, Gillman M. Public research, private concerns: ethical issues in the use of open-ended interviews with people who have learning disabilities. Disabil Soc 1998;13:21–36
  • Booth T, Booth W. Sounds of silence: narrative research with inarticulate subjects. Disabil Soc 1996;11:55–69
  • Lloyd V, Gatherer A, Kalsy S. Conducting qualitative interview research with people with expressive language difficulties. Qual Health Res 2006;16:1386–404
  • Frones I. Theorizing indicators: on indicators, signs and trends. Soc Indicators Res 2007;83:5–23
  • Foley K-R, Blackmore AM, Girdler S, et al. To feel belonged: the voices of children and youth with disabilities on the meaning of well-being. Child Indicators Res 2012;5:375–91
  • Kitzinger J. The methodology of focus groups: the importance of interaction between research participants. Sociol Health Illness 1994;16:103–21
  • Tietelman J, Copolillo A. Psychosocial issues in older adults adjustment to vision loss: findings from qualitative interviews and focus groups. Am J Occup Ther 2005;59:409–17
  • Dyke P, Leonard H, Bourke J, et al. Down Syndrome Needs Opinions Wishes Study Report. Perth, Western Australia: Telethon Institute of Child Health Research; 2007
  • Taylor SJ, Bogdan R. Introduction to qualitative research methods: a guidebook and resource. 3rd ed. New York: John Wiley & Sons Inc.; 1998
  • DiCicco-Bloom B, Crabtree BF. The qualitative research interview. Med Educ 2006;40:314–21
  • Finlay WML, Lyons E. Methodological issues in interviewing and using self-report questionnaires with people with mental retardation. Psychol Assess 2001;13:319–35
  • Ryan F, Coughlan M, Cronin P. Interviewing in qualitative research: the one-to-one interview. Int J Ther Rehabil. 2009;16:309–14
  • Nvivo. Using Nvivo in qualitative research. Melbourne: QSR International; 2002
  • Strauss A, Corbin J. Basics of qualitative research: grounded theory procedures and techniques. Newbury Park (CA): SAGE Publications Inc; 1990
  • Taylor MC. Evidence-based practice for occupational therapists. 2nd ed. Oxford: Blackwell Publishing Ltd; 2007
  • DePoy EG, Gitlin LN. Introduction to research: understanding and applying multiple strategies. 3rd ed. St. Louis (MO): Elsevier Mosby; 2005
  • Erikson EH. The life cycle completed: a review. New York: Rikan Enterprises Ltd; 1982
  • Craig GJ. Human development. 7th ed. New Jersey: Prentice-Hall Inc.; 1996
  • Jobling A, Moni KB, Nolan A. Understanding friendship: young adults with Down syndrome exploring relationships. J Intellect Dev Disabil 2000;25:235–45
  • Seale JK. The use of the Personal Home Page by adults with Down’s syndrome as a tool for managing identity and friendship. Br J Learn Disabil 2002;30:142–8
  • Sadock BJ, Sadock VA. Kaplan & Sadock’s synopsis of psychiatry: behavioral sciences/clinical psychiatry. 10th ed. Philadelphia: Lippincott Williams & Wilkins, a Walter Kluwer Business; 2007
  • Nadeau L, Tessier R, Lefebvre F, Robaey P. Victimization: a newly recognized outcome of prematurity. Dev Med Child Neurol 2004;46:508–13
  • Tenenbaum LS, Varjas K, Meyers J, Parris L. Coping strategies and perceived effectiveness in fourth through eighth grade victims of bullying. Sch Psychol Int 2011;32:263–87
  • Watt KJ, Johnson P, Virji-Babul N. The perception of friendship in adults with Down syndrome. J Intellect Disabil Res 2010;54:1015–23
  • Evans DS, McGuire BE, Healy E, Carley SN. Sexuality and personal relationships for people with an intellectual disability. Part II: staff and family carer perspectives. J Intellect Disabil Res 2009;53:913–21
  • Lucas-Carrasco R, Salvador L. Life satisfaction in persons with intellectual disabilities. Res Dev Disabil 2012;33:1103–9
  • Verdugo MA, Navas P, Gomez LE, Schalock RL. The concept of quality of life and its role in enhancing human rights in the feild of intellectual disability. J Intellect Disabil Res 2012;56:1036–45
  • Achterberg TJ, Wind H, de Boer AGEM, Frings-Dresen MHW. Factors that promote or hinder young disabled people in work participation: a systematic review. J Occup Rehabil 2009;19:129–41
  • Dusseljee JCE, Rijken PM, Cardol M, et al. Participation in daytime activities among people with mild or moderate intellectual disability. J Intellect Disabil Res 2011;55:4–18
  • Lindsay S. Employment status and work characteristics among adolescents with disabilities. Disabil Rehabil 2011;33:843–54
  • Crepeau EB, Cohn ES, Boyt Schell BA. Willard & Spackman’s occupational therapy. 10th ed. Philadelphia (PA): Lippincott Williams & Wilkins; 2003
  • Banks P, Jahoda A, Dagnan D, et al. Supported employment for people with intellectual disability: the effects of job breakdown on psychological well-being. J Appl Res Intellect Disabil 2010;23:344–54
  • Duvdevany L, Arar E. Leisure activities, friendships, and quality of life of persons with intellectual disability: foster homes vs community residential settings. Int J Rehabil Res 2004;27:289–96
  • Braun KVN, Yeargin-Allsopp M, Lollar D. A multi-dimensional approach to the transition of children with developmental disabilities into young adulthood: the acquisition of adult social roles. Disabil Rehabil 2006;28:915–28
  • World Health Organization. ICF: International Classification of Functioning, Disability and Health. 1st ed. Geneva: World Health Organisation; 2001
  • Power A. Caring for independent lives: geographies of caring for young adults with intellectual disabilities. Soc Sci Med 2008;67:834–43
  • Stancliffe RJ, Keane S. Outcomes and costs of community living: a matched comparison of group homes and semi-independent living. J Intellect Dev Disabil 2000;25:281–305
  • Li EPY. Self-perceived equal opportunities for people with intellectual disability. Int J Rehabil Res 2004;27:241–5
  • Tuckerman P, Cain P, Long B, Klarkowski J. An exploration of trends in open employment in Australia since 1986. J Vocational Rehabil 2012;37:173--83
  • Shogren KA, Broussard R. Exploring the perceptions of self-determination of individuals with intellectual disability. Intellect Dev Disabil 2011;49:86–102
  • McGill T, Vogtle LK. Driver’s education for students with physical disability. Except Child 2001;67:455–66
  • Ziegler F, Schwanen T. ‘I like to go out to be energised by different people’: an exploratory analysis of mobility and wellbeing in later life. Aging Soc 2011;31:758–81
  • Cuskelly M, Bryde R. Attitudes towards the sexuality of adults with an intellectual disability: parents, support staff, and a community sample. J Intellect Dev Disabil 2004;29:255–64
  • Buck N, Scott J. She’s leaving home: but why? An analysis of young people leaving the parental home. J Marriage Fam 1993;55:863–74
  • Holmstrom LL, Karp DA, Gray PS. Why laundry, not Hegel? Social class, transition to college and pathways to adulthood. Symbol Interact 2002;25:437–62

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