Résumés
Résumé
L’autodétermination constitue un thème de recherche majeur dans le domaine de la déficience intellectuelle (DI) depuis une trentaine d’années. Puisque les personnes présentant une DI peuvent désormais aspirer à une vie plus longue, il devient nécessaire de s’interroger sur leur niveau d’autodétermination après 40 ans. Cette recension des écrits publiés entre 2007 et 2017 inspirée de la « scoping review », fait le bilan des connaissances disponibles sur le sujet. Les 23 études recensées traitent de (1) l’emploi et de la retraite, (2) des activités de loisirs, (3) des soins de santé et de fin de vie et de (4) l’hébergement. L’analyse de ces études, selon le modèle socioécologique, suggère un faible niveau d’autodétermination et identifie des enjeux particuliers durant cette période de la vie. Cette recension des écrits met en lumière certaines considérations et avenues potentielles pour la pratique et la recherche.
Mots-clés :
- Déficience intellectuelle,
- personnes âgées,
- autodétermination,
- recension des écrits
Abstract
Self-determination has been a major research topic in the field of intellectual disability (ID) for the past thirty years. Since people with ID can now aspire to a longer life, it becomes necessary to question their level of self-determination after forty years old. This review of the literature published between 2007 and 2017, inspired by the "scoping review", illustrates the knowledge available on the subject. The 23 studies reviewed focus on (1) employment and retirement, (2) leisure activities, (3) health and end-of-life care and (4) accommodation. The analysis of these studies, according to the socioecological model, suggests a low level of self-determination and identifies specific issues during this period of life. This literature review highlights some potential considerations and avenues for practice and research.
Keywords:
- Intellectual disability,
- elderly,
- self-determination,
- literature Review
Parties annexes
Bibliographie
- Arias, B., Ovejero, A. et Morentin, R. (2009). Love and emotional well-being in people with intellectual disabilities. The Spanish Journal of Psychology, 12(1), 204-216.
- Arksey, H. et O'Malley, L. (2005). Scoping studies: towards a methodological framework. International Journal of Social Research Methodology, 8(1) 19-32. https://doi-org/10.1080/1364557032000119616
- Bekkema, N., De Veer, A.J.E., Hertogh, C.M.P.M. et Francke, A.L. (2014). Respecting autonomy in the end-of-life care of people with intellectual disabilities: A qualitative multiple-case study. Journal of Intellectual Disability Research, 58(4), 368-380. https://doi-org/10.1111/jir.12023
- Bekkema, N., De Veer, A.J.E., Wagemans, A.M.A., Hertogh, C.M.P.M. et Francke, A.L. (2014). Decision making about medical interventions in the end-of-life care of people with intellectual disabilities: A national survey of the considerations and beliefs of GPs, ID physicians and care staff. Patient Education and Counseling, 96, 204-209. https://doi-org/10.1016/j.pec.2014.05.014
- Bekkema, N., De Veer, A.J.E., Wagemans, A.M.A., Hertogh, C.M.P.M. et Francke, A.L. (2015). "To move or not to move": A national survey among professionals on beliefs and considerations about the place of end-of-life care for people with intellectual disabilities. Journal of Intellectual Disability Research, 59(3), 226-237. https://doi-org/10.1111/jir.12130
- Bigby, C., Bowers, B.J. et Webber, R. (2010). Planning and decision making about the future care of older group home residents and transition to residential aged care. Journal of Intellectual Disability Research, 55(8), 777-789. https://doi-org/10.1111/j.1365-2788.2010.01297
- Bigby, C. et Knox, M. (2009). I want to see the queen: Experiences of service use by ageing people with an intellectual disability. Australian Social Work, 62(2), 216-231. https://doi-org/10.1080/03124070902748910
- Bittles, A.H., Petterson, B.A., Sullivan, S.G., Hussain, R., Glasson, E.J. et Montgomery, P.D. (2002). The influence of intellectual disability on life expectancy. Journal of Gerontology: Medical Sciences, 57A(7), 470-472.
- Bronfenbrenner, U. (1979). The ecology of human development: Experiments by nature and design. Harvard University Press.
- Bronfenbrenner, U. (1986). Ecology of the family as a context for human development: Research perspectives. Developmental Psychology, 22 (6), 723-742
- Buys, L., Goulton-Lewis, G., Tedman-Jones, J., Edwards, H. et Knox, M. (2008). Issues of active ageing: Perceptions of older people with lifelong intellectual disability. Australian Journal on Ageing, 27(2), 67-71. https://doi-org/10.1111/j.1741-6612.2008.00287
- Caouette, M. (2014). Étude descriptive des pratiques d’intervention en CRDITED favorisant l’autodétermination d’adultes présentant une déficience intellectuelle: la perspective des intervenants [Thèse de doctorat, Université du Québec à Trois-Rivières]. Cognitio. http://depot-e.uqtr.ca/7356/1/030673978.pdf
- Carter, E.W., Owens, L., Trainor, A.A., Sun, Y. et Swedeen, B. (2009). Self-determination skills and opportunities of adolescents with severe intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 114(3), 179-192.
- Chou, Y.C., Schalock, R.L., Tzou, P.Y., Lin, L.C., Chang, A.L., Lee, W.P. et Chang, S.C. (2007). Quality of life of adults with intellectual disabilities who live with families in Taiwan. Journal of Intellectual Disability Research, 51(2), 875-883.
- Deci, E.L. et Ryan, R.M. (1985). Intrinsic motivation and self-determination in human behavior. Plenum.
- Emond Pelletier, J. et Joussemet, M. (2014). Le soutien à l’autodétermination des personnes ayant une déficience intellectuelle. Revue de psychoéducation, 43(1), 37-55.
- Heller, T., Miller, A.B., Hsieh, K. et Sterns, H. (2000). Later-life planning: Promoting knowledge of options and choice-making. Mental retardation, 38(5), 395-406.
- Heller, T., Schindler, A., Palmer, S., Wehmeyer, M.L., Parent, W., Jenson, R., Abery, B., Geringer, W., Bacon, A. et O’Hara, D.M. (2011). Self-determination across the life span: Issues and gaps. Exceptionality: A Special Education Journal, 19(1), 31-45.
- Higgins, L. et Mansell, J. (2009). Quality of life in group homes and older persons' homes. British Journal of Learning Disabilities, 37, 207-212. https://doi-org/10.1111/j.1468-3156.2009.00550
- Hogg, J., Lucchino, R., Wang, K. et Janicki, M. (2001). Healthy ageing – adults with intellectual disabilities: Ageing and social policy. Journal of Applied Research in Intellectual Disabilities, 14(3), 229-255.
- Hole, R.D., Stainton, T. et Wilson, L. (2013). Ageing adults with intellectual disabilities: Self-advocates' and family members' perspectives about the future. Australian Social Work, 66(4), 571-589. https://doi-org/10.1080/0312407X.2012.689307
- Judge, J., Walley, R., Anderson, B. et Young, R. (2010). Activities, 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. https://doi-org/10.1111/j.1741-1130.2010.00279
- Lachapelle, Y. et Wehmeyer, M.L. (2003). L’autodétermination. Dans M.J. Tassé et D. Morin (dir.), La déficience intellectuelle (pp. 204-214). Gaëtan Morin.
- Lachapelle, Y., Lussier-Desrochers, D., Caouette, M. et Therrien-Bélec, M. (2013). L’utilisation d’un assistant au déplacement : étude de cas en déficience intellectuelle. Revue francophone de la déficience intellectuelle, 22, 63-68.
- Lachapelle, Y., Wehmeyer, M.L., Haelewyck, M.C., Courbois, Y., Keith, K.D., Schalock, R., Verdugo, M.A. et Walsh, P.N. (2005). The relationship between quality of life and self-determination: An international study. Journal of Intellectual Disability Research, 49(10), 740 744. https://doi.org/10.1111/j.1365-2788.2005.00743
- Lehmann, B.A., Bos, A.E.R., Rijken, M., Cardol, M., Peters, G.J.Y., Kok, G. et Curfs, L.M.G. (2013). Ageing with an intellectual disability: The impact of personal resources on well-being. Journal of Intellectual Disability Research, 57(11), 1068-1078. https://doi-org/10.1111/j.1365-2788.2012.01607
- Levac, D., Colquhoun, H. et O'Brien, K.K. (2010). Scoping studies: Advancing the methodology. Implementation Science, 5(69). https://doi-org/10.1186/1748-5908-5-69
- McDermott, S. et Edwards, R. (2012). Enabling self-determination for older workers with intellectual disabilities in supported employment in Australia. Journal of Applied Research in Intellectual Disabilities, 25, 423-432. https://doi.org/10.1111/j.1468-3148.2012.00683
- Parsons, M.B., Harper, V.N., Jensen, J.M. et Reid, D.H. (1997). Integrating choice into the leisure routines of older adults with severe disabilities. The Journal of the Association of Persons with Severe Handicaps, 22(3), 170-175.
- Rossow-Kimball, B. et Goodwin, D.L. (2009). Self-determination and leisure experiences of women living in two group homes. Adapted Physical Activity Quarterly, 26, 1-20.
- Rossow-Kimball, B. et Goodwin, D.L. (2014). Inclusive leisure experiences of older adults with intellectual disabilities at a senior centre. Leisure Studies, 33(3), 322-338. https://doi.org/10.1080/02614367.2013.768692
- Salvatori, P., Tremblay, M. et Tryssenaar, J. (2003). Living and aging with a developmental disability: Perspectives of individuals, family members and service providers. Journal on developmental disabilities, 10(1), 2-19.
- Schalock, R.L., Borthwick-Duffy, S.A., Bradley, V.J., Buntinx, W.H.E., Coulter, D.L., Craig, E.M., Gomez, S.C., Lachapelle, Y., Luckasson, R., Reeve, A., Shogren, K.A., Snell, M.E., Spreat, S., Tassé, M.J., Thompson, J.R., Verdugo-Alonso, M.A., Wehmeyer, M.L. et Yeager, M.H. (2010). Intellectual disability: Definition, classification, and systems of supports (11th ed.). American Association on Intellectual and Developmental Disabilities.
- Shogren, K. (2012). Culture and self-determination: A synthesis of the literature and directions for future research and practice. Career Development for Exceptional Individuals, 34(2), 115-127.
- Strnadova, I. et Evans, D. (2012). Subjective quality of life of women with intellectual disabilities: The role of perceived control over their own life in self-determined behaviour. Journal of Applied Research in Intellectual Disabilities, 25(1), 71–79. https://doi.org/10.1111/j.1468-3148.2011.00646
- Strnadova, I. et Evans, D. (2015). Older women with intellectual disabilities: Overcoming barriers to autonomy. Journal of Policy and Practice in Intellectual Disabilities, 12(1), 12-19. https://doi.org/10.1111/jppi.12097
- Tétreault, S. et Blais-Michaud, S. (2014). Étude de la portée (scoping review). Dans S. Tétreault et P. Guillez (dir.), Guide pratique de recherche en réadaptation. Méthodes, techniques et outils d’intervention (p. 151-160). De Boeck.
- Tuffrey-Wijne, I., Bernal, J. et Hollins, S. (2010). Disclosure and understanding of cancer diagnosis and prognosis for people with intellectual disabilities: Findings from an ethnographic study. European Journal of Oncology Nursing, 14, 224-230. https://doi.org/10.1016/j.ejon.2010.01.021
- Tuffrey-Wijne, I., Bernal, J., Hubert, J., Butler, G. et Hollins, S. (2009). People with learning disabilities who have cancer: an ethnographic study. British Journal of General Practice, 59(564), 503-509. https://doi.org/10.3399/bjgp09X453413
- Wagemans, A., Van Schrojenstein Lantmand-de-Valk, H., Tuffrey-Wijne, I., Widdershoven, G. et Curfs, L. (2010). End-of-life decisions: An important theme in the care for people with intellectual disabilities. Journal of Intellectual Disability Research. 54(6), 516-524. https://doi-org/10.1111/j.1365-2788.2010.01276x
- Wagemans, A., Van Schrojenstein Lantman-de Valk, H., Proot, I., Metsemakers, J., Tuffrey-Wijne, I. et Curfs, L. (2013a). The factors affecting end-of-life decision-making by physicians of patients with intellectual disabilities in the Netherlands: a qualitative study. Journal of Intellectual Disability Research, 57(4), 380-389. https://doi-org/10.1111/j.1365-2788.2012.01550x
- Wagemans, A.M.A., Van Schrojenstein Lantman-de Valk, H., Proot, I.M., Metsemakers, J., Tuffrey-Wijne, I. et Curfs, L.M.G. (2013b). End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives. Palliative Medicine, 27(8), 765-771. https://doi-org/10.1177/0269216312468932
- Walker, H.M., Calkins, C., Wehmeyer, M.L., Walker, L., Bacon, A., Palmer, S., Jesien, G., Nygren, M., Heller, T., Gotto, G., Abery, B. et Johnson, D.R. (2011). A social-ecological approach to promote self-determination. Exceptionality: A Special Education Journal, 19(1), 6-18.
- Wark, S., Canon-Vanry, M., Ryan, P., Hussain, R., Knox, M., Edwards, M., Parmenter, M., Parmenter, T., Janicki, M. et Geggatt-Cook, C. (2015). Ageing-related experiences of adults with learning disability resident in rural areas: One Australian perspective. British Journal of Learning Disabilities, 43, 293-301. https://doi.org/10.1111/bld.12145
- Webber, R., Bowers, B. et McKenzie-Green, B. (2010). Staff responses to age-related health changes in people with an intellectual disability in group homes. Disability & Society, 25(6), 657-671. https://doi-org/10.1080/09687599.2010.505736
- Wehmeyer, M.L. (1996). Self-determination as an educational outcome: Why is it important to children, youth, and adults with disabilities? Dans D.J. Sands et M.L. Wehmeyer (dir.), Self-determination across the life span: Independence and choice for people with disabilities (pp. 17-36). Paul H. Brookes.
- Wehmeyer, M.L. (2005). Self-determination and individuals with severe disabilities: Re-examining meanings and misinterpretations. Research and Practice for Persons with Severe Disabilities, 30(3), 113-120.
- Wehmeyer, M.L. et Abery, B.H. (2013). Self-determination and choice. Intellectual and Developmental Disabilities, 51(5), 399-411.
- Wehmeyer, M.L. et Garner, N.W. (2003). The impact of personal characteristics of people with intellectual and developmental disability on self-determination and autonomous functioning. Journal of Applied Research in Intellectual Disabilities, 16, 255-265.
- Wehmeyer, M.L.et Palmer, S.B. (2003). Adult outcomes for students with cognitive disabilities three-years after high school: The impact of self-determination. Education and Training in Developmental Disabilities, 38(2), 131-144.
- Wehmeyer, M.L., Kelcher, K. et Richards, S. (1996). Essential characteristics of self-determined behavior of individuals with mental retardation. American Journal on Mental Retardation, 100(6), 632-642.
- Wiese, M., Stancliffe, R.J., Balandin, S., Howarth, G. et Dew, A. (2012). End-of-life care and dying: Issues raised by staff supporting older people with intellectual disability in community living services. Journal of Applied Research in Intellectual Disabilities, 25, 571-583. https://doi-org/10.1111/jar.12000
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