Abstracts
Résumé
La multiplication des recherches qualitatives sur la relation entre les frères et/ou soeurs permet de mieux comprendre son influence sur la santé des personnes. Toutefois, la manière dont les thèmes sont sélectionnés pour identifier ce qui compte véritablement dans la description de cette relation demeure limitée dans la littérature scientifique. Cet article décrit une démarche participative de développement d’un outil de recherche permettant d’explorer les caractéristiques de la relation fraternelle. Le développement de l’outil s’est déroulé en deux phases : l’identification des thèmes utilisés dans les recherches pour explorer la relation fraternelle et la coconstruction de l’outil de recherche avec de jeunes adultes autistes. Le processus itératif a inclus la participation active des jeunes adultes autistes à la formulation des questions, la coanalyse répétée des questions suggérées par les membres de l’équipe de recherche ainsi que la priorisation des thèmes et la validation du contenu de l’outil par les jeunes adultes autistes. L’outil élaboré comporte 13 thèmes organisés selon les dimensions de caractéristiques des contacts, caractéristiques des interactions, qualité de la relation et fonctions de la relation fraternelle. Les attributs de l’expérience de participation perçus par les jeunes adultes autistes guideraient la réflexion concernant l’optimisation de la collaboration de ces jeunes dans la recherche qualitative.
Mots-clés :
- relation fraternelle,
- outil,
- évaluation,
- approche qualitative,
- jeune adulte autiste
Abstract
A growing body of qualitative research on sibling relationships has provided a better understanding of their influence on individuals’ health. However, this scientific literature offers limited insight into how themes are selected to identify what truly matters in describing these relationships. This article describes the participatory approach taken to developing a research tool to explore the characteristics of sibling relationships. The tool’s development took place in two phases: identifying the themes used in research to explore sibling relationships and co-constructing the research tool with young adults with autism. The iterative process included the active participation of young adults with autism in formulating the questions and the repeated co-analysis of the questions suggested by members of the research team, as well as in prioritizing the themes and validating the tool’s content. The tool comprises 13 themes organized according to the dimensions of contact characteristics, interaction characteristics, relationship quality, and functions of the sibling relationship. The attributes of the participation experience as perceived by young adults with autism will be used to guide reflections on optimizing these young adults’ involvement in qualitative research.
Keywords:
- Sibling relationship,
- tool,
- evaluation,
- qualitative approach,
- young adult with autism
Appendices
Références
- Angell, M. E., Meadan, H., & Stoner, J. B. (2012). Experiences of siblings of individuals with autism spectrum disorders. Autism Research and Treatment, 2012(1). https://doi.org/10.1155/2012/949586
- Bardin, L. (2013). L’analyse de contenu. Presses universitaires de France.
- Blake, L., Bland, B., & Rouncefield-Swales, A. (2023). Estrangement between siblings in adulthood: A qualitative exploration. Journal of Family Issues, 44(7), 1859-1879. https://doi.org/10.1177/0192513X211064876
- Blamires, J., Foster, M., Rasmussen, S., Zgambo, M., & Mörelius, E. (2024). The experiences and perceptions of healthy siblings of children with a long-term condition: Umbrella review. Journal of Pediatric Nursing, 77, 191-203. https://doi.org/10.1016/j.pedn.2024.03.022
- Botha, M., Dibb, B., & Frost, D. M. (2020). “Autism is me”: An investigation of how autistic individuals make sense of autism and stigma. Disability & Society, 37(3), 427-453. https://doi.org/10.1080/09687599.2020.1822782
- Braun, V., & Clarke, V. (2020). One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology, 18(3), 328-352. https://doi.org/10.1080/14780887.2020.1769238
- Buist, K. L., Eichelsheim, V. I., Cook, W. L., Van Lier, P. A., Koot, H. M., & Meeus, W. H. (2020). Family negativity and delinquent behaviour in adolescence: A predictive multivariate latent growth analysis. Psychology, Crime & Law, 26(9), 849-867. https://doi.org/10.1080/1068316X.2020.1742337
- Cridland, E. K., Jones, S. C., Stoyles, G., Caputi, P., & Magee, C. A. (2016). Families living with autism spectrum disorder: Roles and responsibilities of adolescent sisters. Focus on Autism and Other Developmental Disabilities, 31(3), 196-207. https://doi.org/10.1177/1088357615583466
- Davies, P. T., Parry, L. Q., Bascoe, S. M., Martin, M. J., & Cummings, E. M. (2019). Children’s vulnerability to interparental conflict: The protective role of sibling relationship quality. Child Development, 90(6), 2118-2134. https://doi.org/10.1111/cdev.13078
- Deniz, E., & Toseeb, U. (2023). A longitudinal study of sibling bullying and mental health in autistic adolescents: The role of self-esteem. Autism research: official journal of the International Society for Autism Research, 16(8), 1533-1549. https://doi.org/10.1002/aur.2987
- Fletcher-Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., Leekam, S., Milton, D., Parr, J. R., & Pellicano, E. (2019). Making the future together: Shaping autism research through meaningful participation. Autism, 23(4), 943-953. https://doi.org/10.1177/1362361318786721
- Fry, C. M., Telzer, E. H., & Rogers, C. R. (2021). Siblings as buffers: Social problems and internalizing and externalizing behaviors across early adolescence. Journal of Family Psychology, 35(7), 939-949. https://doi.org/10.1037/fam0000876
- Gilligan, M., Diggs, O., Neppl, T. K., Stocker, C. M., & Conger, K. J. (2024). The influence of sibling relationship quality on emotional distress from adolescence to early midlife. Journal of Family Psychology. https://doi.org/10.1037/fam0001209
- Gorjy, R. S., Fielding, A., & Falkmer, M. (2017). “It’s better than it used to be”: Perspectives of adolescent siblings of children with an autism spectrum condition. Child & Family Social Work, 22(4), 1488-1496. https://doi.org/10.1111/cfs.12371
- Gungordu, N., Ozturk, B., & Hernandez‐Reif, M. (2022). Empathy and sibling relationship dynamics of women in emerging adulthood: Mixed‐method research. Family Relations, 71(1), 238-255. https://doi.org/10.1111/fare.12618
- Howe, N., & Recchia, H. (2005). Playmates and teachers: Reciprocal and complementary interactions between siblings. Journal of Family Psychology, 19(4), 497-502. https://doi.org/10.1037/0893-3200.19.4.497
- Jensen, A. C., Hamwey, M. K., Parkinson, C., Dayley, J. C., & Whiteman, S. D. (2023). The emerging adults’ relationships with siblings scale: Development and validation. Emerging Adulthood, 11(1), 32-47. https://doi.org/10.1177/21676968221127076
- Jensen, A. C., Killoren, S. E., Campione-Barr, N., Padilla, J., & Chen, B.-B. (2022). Sibling relationships in adolescence and young adulthood in multiple contexts: A critical review. Journal of Social and Personal Relationships, 40(2), 384-419. https://doi.org/10.1177/02654075221104188
- Jones, E. A., Fiani, T., Stewart, J. L., Sheikh, R., Neil, N., & Fienup, D. M. (2019). When one sibling has autism: Adjustment and sibling relationship. Journal of Child and Family Studies, 28(5), 1272-1282. https://doi.org/10.1007/s10826-019-01374-z
- Lamb, M. E., & Sutton-Smith, B. (Éds). (2014). Sibling relationships: Their nature and significance across the lifespan. Psychology Press.
- Lannuzzi, D., Fell, L., Luberto, C., Goshe, B. M., Perez, G., Park, E., Crute, S., Kuhlthau, K., & Traeger, L. (2022). Challenges and growth: Lived experience of adolescents and young adults (AYA) with a sibling with ASD. Journal of Autism and Developmental Disorders, 52, 2430-2437. https://doi.org/10.1007/s10803-021-05135-0
- Lawson, K. M., & Robins, R. W. (2021). Sibling constructs: What are they, why do they matter, and how should you handle them? Personality and Social Psychology Review, 25(4), 344-366. https://doi.org/10.1177/10888683211047101
- Lin, J., Hayden, N. K., & Hastings, R. P. (2024). Construct validity of the Lifespan Sibling Relationship Scale measuring adult sibling relationship quality where one sibling has intellectual or developmental disabilities. International Journal of Developmental Disabilities, 71(7), 1039-1047. https://doi.org/10.1080/20473869.2023.2301191
- Macedo Costa, T., & da Silva Pereira, A. P. (2019). The child with autism spectrum disorder: The perceptions of siblings. Support for Learning, 34(2), 193-210. https://doi.org/10.1111/1467-9604.12248
- Marotta, A. K. (2015). The relationship between sibling relationship quality and psychological outcomes in emerging adulthood [Thèse de doctorat inédite]. Université Columbia, États-Unis. https://doi.org/10.7916/D85T3JRG
- McInerney, A. (2014). Sibling relationship quality in emerging adulthood: Associations with coping, stress and life satisfaction [Thèse de doctorat inédite]. DBS School of Arts, Dublin. https://esource.dbs.ie/server/api/core/bitstreams/e7fb16eb-9624-4853-8eb6-a15d94dd8a67/content
- Nicolaidis, C., Raymaker, D. M., McDonald, K. E., Lund, E. M., Leotti, S., Kapp, S. K., Katz, M., Beers, L. M, Kripke, C., Maslak, J., Hunter, M., & Zhen, K. Y. (2020). Creating accessible survey instruments for use with autistic adults and people with intellectual disability: Lessons learned and recommendations. Autism in Adulthood, 2(1), 61-76. https://doi.org/10.1089/aut.2019.0074
- Öz Soysal, F. S. (2016). A study on sibling relationships, life satisfaction and loneliness level of adolescents. Journal of Education and Training Studies, 4(4), 58-67. https://doi.org/10.11114/jets.v4i4.1240
- Pavlopoulou, G., & Dimitriou, D. (2019). “I don’t live with autism; I live with my sister”. Sisters’ accounts on growing up with their preverbal autistic siblings. Research in developmental disabilities, 88, 1-15. https://doi.org/10.1016/j.ridd.2019.01.013
- Pavlopoulou, G., & Dimitriou, D. (2020). In their own words, in their own photos: Adolescent females’ siblinghood experiences, needs and perspectives growing up with a preverbal autistic brother or sister. Research in developmental disabilities, 97, 103556. https://doi.org/10.1016/j.ridd.2019.103556
- Petalas, M. A., Hastings, R. P., Nash, S., Reilly, D., & Dowey, A. (2012). The perceptions and experiences of adolescent siblings who have a brother with autism spectrum disorder. Journal of Intellectual & Developmental Disability, 37(4), 303-314. https://doi.org/10.3109/13668250.2012.734603
- Peters, M. D. J., Marnie, C., Tricco, A. C., Pollock, D., Munn, Z., Alexander, L., McInerney, P., Godfrey, C. M., & Khalil, H. (2020). Updated methodological guidance for the conduct of scoping reviews. JBI evidence synthesis, 18(10), 2119–2126. https://doi.org/10.11124/JBIES-20-00167
- Quatrosi, G., Genovese, D., Amodio, E., & Tripi, G. (2023). The quality of life among siblings of autistic individuals: A scoping review. Journal of Clinical Medicine, 12(3), 735. https://doi.org/10.3390/jcm12030735
- Sang, S. A., & Nelson, J. A. (2017). The effect of siblings on children’s social skills and perspective taking. Infant and Child Development, 26(6), e2023. https://doi.org/10.1002/icd.2023
- Shivers, C. M., Jackson, J. B., & McGregor, C. M. (2019). Functioning among typically developing siblings of individuals with autism spectrum disorder: A meta-analysis. Clinical Child and Family Psychology Review, 22(2), 172-196. https://doi.org/10.1007/s10567-018-0269-2
- Sommantico, M., Donizzetti, A. R., De Rosa, B., & Parrello, S. (2019). Young adults’ sibling relationships: Italian adaptation and validation of the Lifespan Sibling Relationship Scale. Journal of Social and Personal Relationships, 36(2), 659-680. https://doi.org/10.1177/0265407517740640
- Stocker, C. M., Gilligan, M., Klopack, E. T., Conger, K. J., Lanthier, R. P., Neppl, T. K., O’Neal, C. W., & Wickrama, K. A. S. (2020). Sibling relationships in older adulthood: Links with loneliness and well-being. Journal of Family Psychology, 34(2), 175-185. https://doi.org/10.1037/fam0000586
- Walton, K. M., & Ingersoll, B. R. (2015). Psychosocial adjustment and sibling relationships in siblings of children with autism spectrum disorder: Risk and protective factors. Journal of Autism and Developmental Disorders, 45(9), 2764-2778. https://doi.org/10.1007/s10803-015-2440-7
- Wang, Y. Z., Li, Y., Liu, T.‐t., Zhao, J.‐j., Li, Y.‐j., & Niu, X.‐b. (2022). Understanding relationships within cultural contexts: Developing an early childhood sibling relationship questionnaire in China. Family Relations: An Interdisciplinary Journal of Applied Family Studies, 71(1), 220-237. https://doi.org/10.1111/fare.12586

