Résumés
Résumé
Avec le vieillissement des parents, le soutien des personnes présentant une déficience intellectuelle (DI) est souvent transféré à leur fratrie, entraînant divers défis. Cette étude explore la réalité des frères et soeurs adultes de personnes présentant une DI au Québec, documentant leur relation et identifiant leurs besoins de soutien. Une approche mixte a été employée auprès de 28 participants. Les répondants déclarent un fort attachement et des contacts réguliers. Ils perçoivent des bénéfices personnels et notent une influence sur leurs décisions de vie. Leur implication est élevée et diversifiée. La majorité se dit prête à soutenir leur fratrie à l’avenir. Leurs besoins prioritaires sont l’information, le soutien par un intervenant ou un site web, et le partage d’expériences avec des pairs.
Mots-clés :
- déficience intellectuelle,
- fratrie,
- adulte,
- besoin,
- relation fraternelle,
- soutien
Abstract
As parents age, the support of individuals with intellectual disabilities (ID) is often transferred to their siblings, leading to various challenges. This study explores the experiences of adult siblings of individuals with ID in Quebec, documenting their relationships and identifying their support needs. A mixed-methods approach was used with 28 participants. Respondents reported strong attachment and regular contact. They perceived personal benefits and noted an influence on their life choices. Their involvement is high and diverse. The majority expressed willingness to support their sibling in the future. Their main needs include access to information, support from a professional or a website, and opportunities to share experiences with peers.
Keywords:
- intellectual disabilities,
- sibling,
- adult,
- need,
- sibling relationship,
- support
Parties annexes
Bibliographie
- Anderson-Kittow, R. J., Keagan-Bull, R., Giles, J. et Tuffrey-Wijne, I. (2024). ‘There's a timebomb’: Planning for parental death and transitions in care for older people with intellectual disabilities and their families. Journal of Applied Research in Intellectual Disabilities, 37(2), e13174. https://doi.org/10.1111/jar.13174
- Andréani, J.-C. et Conchon, F. (2005). Fiabilité et validité des enquêtes qualitatives. Un état de l’art en marketing. Revue française du marketing, 201, 5-21.
- Arnold, C. K., Heller, T. et Kramer, J. (2012). Support needs of siblings of people with developmental disabilities. Intellectual and Developmental Disabilities, 50(5), 373-382. https://doi.org/10.1352/1934-9556-50.5.373
- Avieli, H., Band-Winterstein, T. et Araten Bergman, T. (2019). Sibling relationships over the life course: Growing up with a disability. Qualitative Health Research, 29(12), 1739-1750. https://doi.org/10.1177/1049732319837228
- Bardin, L. (2013). L’analyse de contenu (2e éd.). Presses universitaires de France.
- Casale, E. G., Burke, M. M., Urbano, R. C., Arnold, C. K. et Hodapp, R. M. (2021). Getting from here to there: Future planning as reported by adult siblings of individuals with disabilities. Journal of Intellectual Disability Research, 65(3), 246-261. https://doi.org/10.1111/jir.12806
- Cogan, K. L. (2021). Exploring postsecondary transition in relationship to quality-of-life experiences of young adults with intellectual disability (Publication No 28869820) [Thèse de doctorat, University of Kansas]. ProQuest Dissertations and Theses Global.
- Coyle, C. E., Kramer, J. et Mutchler, J. E. (2014). Aging together: Sibling carers of adults with intellectual and developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 11(4), 302-312. https://doi.org/10.1111/jppi.12094
- Dorsman, N. I., Luijkx, J., van der Schans, C. P., van der Putten, A. A. J. et Waninge, A. (2024). Experiences of adult siblings of individuals with an intellectual disability and pervasive support needs. Research and Practice for Persons with Severe Disabilities, 49(3), 155-173. https://doi.org/10.1177/15407969241245611
- Gauthier-Boudreault, C. (2016). La transition vers la vie adulte : les besoins des jeunes adultes présentant une déficience intellectuelle profonde et de leur famille, les facteurs qui l’influencent et les pistes de solutions pour la faciliter [Mémoire de maitrise inédit]. Université de Sherbrooke.
- Goldie, M. J., Dobson, K. L., Munce, S. E. P., Killackey, T., Bayley, M., Stapleford, C., Kua, A., Perrier, L. et Kokorelias, K. M. (2024). Future care planning of adults with childhood-onset neurodevelopmental disabilities: A scoping review. Research in Developmental Disabilities, 154, 104843. https://doi.org/10.1016/j.ridd.2024.104843
- Gouvernement du Quebec. (2021). Plan d’action gouvernemental pour les personnes proches aidantes 2021-2026 – Reconnaitre pour mieux soutenir. https://publications.msss.gouv.qc.ca/msss/fichiers/2021/21-835-11W.pdf
- Hall, S. A. et Rossetti, Z. (2017). The roles of adult siblings in the lives of people with severe intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 31, 423-434. https://doi.org/10.1111/jar.12421
- Hamel, P. J., Sénécal, G., Vachon, N., Bizier, C. et Saint-Laurent-Sénécal, F. (2018). Une place après 21 ans pour les jeunes adultes polyhandicapés. http://espace.inrs.ca/id/eprint/7605/1/Une-place-21ans-rapportINRS-final2.pdf
- Hill-Weld, J. (2011). Psychotherapy with families impacted by intellectual disability, throughout the lifespan. Advances in Mental Health and Intellectual Disabilities, 5(5), 26-33. https://doi.org/10.1108/20441281111180637
- Hodapp, R. M., Sanderson, K. A., Meskis, S. A. et Casale, E. G. (2017). Adult siblings of persons with intellectual disabilities: Past, present, and future. International Review of Research in Developmental Disabilities, 53, 163-202. https://doi.org/10.1016/bs.irrdd.2017.08.001
- Hodapp, R. M. et Urbano, R. C. (2007). Adult siblings of individuals with Down syndrome versus with autism: Findings from a large‐scale US survey. Journal of Intellectual Disability Research, 51(12), 1018-1029. https://doi.org/10.1111/j.1365-2788.2007.00994.x
- Hodapp, R. M., Urbano, R. C. et Burke, M. M. (2010). Adult siblings of individuals with Down syndrome versus with autism: Findings from a large-scale US survey. Journal of Intellectual Disability Research, 54(6), 451-456. https://doi.org/10.1111/j.1365-2788.2010.01284
- IBM Corp. (2022). IBM SPSS Statistics for Windows (Version 29.0) [Logiciel informatique].
- Kasper, K., Ijzerman, L., Nieuwenhuijse, A., Huisman, S., Schippers, A., Willem, D. et Olsman, E. (2021). Siblings’ and parents’ perspectives on the future care for their family member with profound intellectual and multiple disabilities: A qualitative study. Journal of Intellectual and Developmental Disability, 46(4), 351-361. https://doi.org/10.3109/13668250.2021.1892261
- Kovshoff, H., Cebula, K. R., Tsai, H.-W. J. et Hastings, R. P. (2017). Siblings of children with autism: The siblings embedded systems framework. Current Developmental Disorders Reports, 4(2), 37-45. https://doi.org/10.1007/s40474-017-0110-5
- Kruithof, K., IJzerman, L., Nieuwenhuijse, A., Huisman, S., Schippers, A., Willems, D. et Olsman, E. (2021). Siblings’ and parents’ perspectives on the future care for their family member with profound intellectual and multiple disabilities: A qualitative study. Journal of Intellectual et Developmental Disability, 46(4), 351-361. https://doi.org/10.3109/13668250.2021.1892261
- Leane, M. (2019). Siblings caring for siblings with intellectual disabilities: Naming and negotiating emotional tensions. Social Science & Medicine, 230, 264-270.
- Leane, M. (2020). “I don’t care anymore if she wants to cry through the whole conversation, because it needs to be addressed”: Adult siblings’ experiences of the dynamics of future care planning for brothers and sisters with a developmental disability. Journal of Applied Research in Intellectual Disabilities, 33(5), 950-961. https://doi.org/10.1111/jar.12716
- Lee, C. E. et Burke, M. M. (2018), Caregiving roles of siblings of adults with intellectual and developmental disabilities: A systematic review. Journal of Policy and Practice in Intellectual Disabilities, 15, 237-246. https://doi.org/10.1111/jppi.12246
- Lee, C. E. et Burke, M. M. (2020). Future planning among families of individuals with intellectual and developmental disabilities: A systematic review. Journal of Policy and Practice in Intellectual Disabilities, 17(2), 94-107. https://doi.org/10.1111/jppi.12324
- Levante, A., Martis, C., Del Prete, C. M., Martino, P., Primiceri, P. et Lecciso, F. (2025). Siblings of persons with disabilities: A systematic integrative review of the empirical literature. Clinical Child and Family Psychology Review, 28(1), 209-253. https://doi.org/10.1007/s10567-024-00502-6
- Lindahl, J., Stollon, N., Wu, K., Liang, A., Changolkar, S., Steinway, C., Trachtenberg, S., Coccia, A., Devaney, M. et Jan, S. (2019). Domains of planning for future long‐term care of adults with intellectual and developmental disabilities: Parent and sibling perspectives. Journal of Applied Research in Intellectual Disabilities, 32(5), 1103-1115. https://doi.org/10.1111/jar.12600
- Mayer, R., Ouellet, F., St-Jacques, M.-C. et Turcotte, D. (2000). Méthode de recherche en intervention sociale. Gaëtan Morin Éditeur.
- Mestre, T. D., Lopes, M. J., Mestre, D. M., Ferreira, R. F., Costa, A. P. et Caldeira, E. V. (2024). Impact of family-centered care in families with children with intellectual disability: A systematic review. Heliyon, 10(7), e28241. https://doi.org/10.1016/j.heliyon.2024.e28241
- McHugh, M. (2017). Adult sibling experiences of having a brother or sister with an intellectual disability: A qualitative synthesis. Journal of Applied Research in Intellectual Disabilities, 30(5), 744-759. https://doi.org/10.1111/jar.12268
- Michallet, B., Julien-Gauthier, F., Marcoux, L., Chesneau, S. et Dumont, C. (2020). Être parent d’un enfant adulte ayant une déficience intellectuelle au Québec : une étude qualitative exploratoire. Revue de psychoéducation, 49(2), 259-283. https://doi.org/10.7202/1073996ar
- Múries-Cantán, O., Schippers, A., Giné, C. et Blom-Yoo, H. (2022). Siblings of people with intellectual and developmental disabilities: A systematic review on their quality-of-life perceptions in the context of a family. International Journal of Developmental Disabilities, 69(6), 797-810. https://doi.org/10.1080/20473869.2022.2036919
- Múries-Cantán, M. T., de Ureta, I. D. et Elices, J. A. P. (2023). Siblings of people with intellectual disabilities: Psychological well-being and quality of life. International Journal of Environmental Research and Public Health, 19(3), 1504. https://doi.org/10.1111/jppi.12451
- Niedbalski, J. (2023). Siblings' and parents' outlook for the prospective care for a family member with PIMD. Family Relations, 72(5), 2942-2957. https://doi.org/10.1111/fare.12895
- Orsmond, G. I. et Seltzer, M. M. (2009). Adolescent siblings of individuals with an autism spectrum disorder: Testing a diathesis–stress model of sibling well-being. Journal of Autism and Developmental Disorders, 39(7), 1053-1065. https://doi.org/10.1007/s10803-009-0722-7
- Orsmond, G. I., Kuo, H. Y. et Seltzer, M. M. (2009). Siblings of individuals with an autism spectrum disorder: Sibling relationships and wellbeing in adolescence and adulthood. Autism, 13(1), 59-80. https://doi.org/10.1177/1362361308097119
- Ouellette-Kuntz, H., Martin, L. et McKenzie, K. (2015). A review of health surveillance in older adults with intellectual and developmental disabilities. International Review of Research in Developmental Disabilities, 48, 151-194. https://doi.org/10.1016/bs.irrdd.2015.03.004
- Rawson, H. (2009). ‘I’m going to be here long after you’ve gone’ – sibling perspectives of the future. British Journal of Learning Disabilities, 38, 225-231.
- Redquest, B. K., Tint, A., Ries, H., Goll, E., Rossi, B. et Lunsky, Y. (2020). Support needs of Canadian adult siblings of brothers and sisters with intellectual/developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 17(3), 239-246. https://doi.org/10.1111/jppi.12339
- Reynolds, M. C., Gotto, G., Agosta, J., Arnold, K. et Fay, M. L. (2016). Supporting families across the life course. National goals in research, practice, and policy. American association on intellectual and developmental disabilities.
- Rossetti, Z. et Hall, S. (2015). Adult sibling relationships with brothers and sisters with severe disabilities. Research and Practice for Persons with Severe Disabilities, 40(2), 120-137. https://doi.org/10.1177/1540796915592829
- Schalock, R. L., Luckasson, R. et Tassé, M. J. (2021). Intellectual disability definition, diagnosis, classification, and systems of supports. AAIDD.
- Schulz, R. et Sherwood, P. R. (2008). Physical and mental health effects of family caregiving. American Journal of Nursing, 108(9), 23-27.
- Seltzer, M. M., Floyd, F., Song, J., Greenberg J. et Hong, J. (2011). Midlife and aging parents of adults with intellectual and developmental disabilities: Impacts of lifelong parenting. American Journal on Intellectual and Developmental Disabilities, 116(6), 479-499. https://doi.org/10.1352/1944-7558-116.6.479
- Shivers, C. M. (2019). Self-reported guilt among adult siblings of people with intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 124, 470-477. https://doi.org/10.1352/1944-7558-124.5.470
- Smith, L. E., Greenberg, J. S. et Seltzer, M. M. (2018). Sibling relationships and well-being in adulthood: Perspectives from siblings of individuals with intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 123(1), 50-63. https://doi.org/10.1352/1944-7558-123.1.50
- St-André, M.-P. (2014). Fratrie adulte de personnes porteuses de la trisomie 21 : vécu affectif, implication actuelle et intentions d'implications pour l'avenir [Essai doctoral, Université du Québec à Trois-Rivières]. Cognitio. https://depot-e.uqtr.ca/id/eprint/7407/
- Stoneman, Z. (2005). Siblings of children with disabilities: Research themes and unanswered questions. Mental Retardation, 43(5), 339-350. https://doi.org/10.1352/0047-6765(2005)43[339:SOCWDR]2.0.CO;2
- Tourangeau R. (1984). Cognitive sciences and survey methods. Dans T. Jabine, M. Straf, J. Tanur et R. Tourangeau (dir.), Cognitive aspects of survey methodology: Building a bridge between disciplines (p. 73-102). National Academy Press.
- Vanderkerken, L., Heyvaert, M., Onghena, P. et Maes, B. (2018). Quality of life in flemish families with a child with an intellectual disability: A multilevel study on opinions of family members and the impact of family member and family characteristics. Applied Research in Quality of Life, 13, 779-802.
- Villeneuve, M., Goupil, G. et Gascon, H. (2012). Perceptions des frères et des soeurs adultes d’une personne présentant une déficience intellectuelle sur leurs relations mutuelles dans la famille, leurs projets de vie et le soutien souhaité. Revue francophone de la déficience intellectuelle, 23, 104-120.
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