Abstract
Adult siblings of individuals with intellectual and developmental disabilities (IDD) are increasingly involved in family care, yet, adult siblings consistently report needing more information and support to engage in these roles. Knowing more about which roles siblings are likely to assume may help address this need. Thus, we further examined the most common roles assumed by adult siblings (N = 171), the demographic variables related to an increased likelihood of assuming specific roles, and the potential clusters in patterns of role assumption. We transformed qualitative data from an online survey with four open-ended questions about sibling relationships and roles into quantitative presence data for role-related codes in order to examine relationships between assumed roles and demographic variables. The most common roles assumed by adult siblings were friend, advocate, caregiver, and sibling. Key demographic variables related to role assumption included disability severity, emotional closeness, and age of the brother or sister with IDD. Cluster analyses indicated five potential categories of adult sibling role involvement: Companion, Least Involved, Highly Involved, Needs Focused, and Professional. Implications and future areas of research are shared.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Aksoy, A. B., & Yildirim, G. B. (2008). A study of the relationships and acknowledgement of non-disabled children with disabled siblings. Educational Sciences: Theory and Practice, 8, 769–779.
Amado, A. N., Stancliffe, R. J., McCarron, M., & McCallion, P. (2013). Social inclusion and community participation of individuals with intellectual/developmental disabilities. Intellectual and Developmental Disabilities, 51, 360–375. https://doi.org/10.1352/1934-9556-51.5.360.
Angell, M. E., Meadan, H., & Stoner, J. B. (2012). Experiences of siblings of individuals with autism spectrum disorders. Autism Research and Treatment. https://doi.org/10.1155/2012/949586.
Arnold, C. K., Heller, T., & Kramer, J. (2012). Support needs of siblings of people with developmental disabilities. Intellectual and Developmental Disabilities, 50, 373–382. https://doi.org/10.1352/1934-9556-50.5.373.
Braddock, D., Hemp, R., Rizzolo, M. C., Tanis, E. S., Haffer, L., & Wu, J. (2015). The state of the states in intellectual and developmental disabilities (10th ed.). Washington, DC: American Association on Intellectual and Developmental Disabilities.
Burke, M. M., Taylor, J. L., Urbano, R., & Hodapp, R. M. (2012). Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 117, 33–47. https://doi.org/10.1352/1944-7558-117.1.33.
Burke, M. M., Arnold, C. K., & Owen, A. L. (2015a). Sibling advocacy: Perspectives about advocacy from siblings of individuals with intellectual and developmental disabilities. Inclusion, 3, 162–175. https://doi.org/10.1352/2326-6988-3.3.162.
Burke, M. M., Fish, T., & Lawton, K. (2015b). A comparative analysis of adult siblings‘ perceptions toward caregiving. Intellectual and Developmental Disabilities, 53, 143–157. https://doi.org/10.1352/1934-9556-53.2.143.
Coppus, A. M. W. (2013). People with intellectual disability: What do we know about adulthood and life expectancy? Developmental Disabilities Research Reviews, 18, 6–16. https://doi.org/10.1002/ddrr.1123.
Creswell, J. W. (2013). Qualitative inquiry & research design: Choosing among five approaches (3rd ed.). Thousand Oaks: Sage.
Davies, M. D., & Beamish, W. (2009). Transitions from school for young adults with intellectual disability: Parental perspectives on “life as an adjustment.”. Journal of Intellectual & Developmental Disability, 34, 248–257. https://doi.org/10.1080/13668250903103676.
Davys, D., Mitchell, D., & Haigh, C. (2010). Futures planning, parental expectations and sibling concern for people who have a learning disability. Journal of Intellectual Disabilities, 14, 167–183.
Findler, L., & Vardi, A. (2009). Psychological growth among siblings of children with and without intellectual disabilities. Intellectual and Developmental Disabilities, 47, 1–12. https://doi.org/10.1352/2009.47:1-12.
Floyd, F. J., Purcell, S. E., Richardson, S. S., & Kupersmidt, J. B. (2009). Sibling relationship quality and social functioning of children and adolescents with intellectual disability. American Journal on Intellectual and Developmental Disabilities, 114, 110–127. https://doi.org/10.1352/2009.114.110-127.
Fujiura, G. T. (2014). The political arithmetic of disability and the American family: A demographic perspective. Family Relations, 63, 7–19. https://doi.org/10.1111/fare.12053.
Gray, K. M., Piccinin, A., Keating, C. M., Taffe, J., Parmenter, T. R., Hofer, S., et al. (2014). Outcomes in young adulthood: Are we achieving community participation and inclusion? Journal of Intellectual Disability Research, 58, 734–745. https://doi.org/10.1111/jir.12069.
Hall, S., & Rossetti, Z. (2017). The roles of siblings in the lives of people with severe to profound intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities. https://doi.org/10.1111/jar.12421.
Heller, T., & Arnold, C. K. (2010). Siblings of adults with developmental disabilities: Psychosocial outcomes, relationships, and future planning. Journal of Policy and Practice in Intellectual Disabilities, 7, 16–25. https://doi.org/10.1111/j.1741-1130.2010.00243.x.
Heller, T., & Kramer, J. (2009). Involvement of adult siblings of persons with developmental disabilities in future planning. Intellectual and Developmental Disabilities, 47, 208–219. https://doi.org/10.1352/1934-9556-47.3.208.
Heller, T., Caldwell, J., & Factor, A. (2007). Aging family caregivers: Policies and practices. Mental Retardation and Developmental Disabilities Research Review, 13, 136–142. https://doi.org/10.1002/mrdd.20138.
Heller, T., Kaiser, A., Meyer, D., Fish, T., Kramer, J., & Dufresne, D. (2008). The Sibling Leadership Network: Recommendations for research, advocacy, and supports relating to siblings of people with developmental disabilities. Chicago: Sibling Leadership Network.
Hewitt, A., & Larson, S. (2007). The direct support workforce in community supports to individuals with developmental disabilities: Issues, implications, and promising practices. Mental Retardation and Developmental Disabilities Research Reviews, 13, 178–187. https://doi.org/10.1002/mrdd.20151.
Hodapp, R. M., & 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, 1018–1029. https://doi.org/10.1111/j.1365-2788.2007.00994.x.
Hodapp, R. M., Urbano, R. C., & Burke, M. M. (2010). Adult female and male siblings of persons with disabilities: Findings from a national survey. Intellectual and Developmental Disabilities, 48, 52–62. https://doi.org/10.1352/1934-9556-48.1.52.
Holl, E., & Morano, C. L. (2014). Supporting the next generation of caregivers: Service use and needs of adult siblings of individuals with intellectual disability. Inclusion, 2, 2–16. https://doi.org/10.1352/2326-6988-2.1.2.
Kamstra, A., van der Putten, A. A. J., & Vlaskamp, C. (2015). The structure of informal social networks of persons with profound intellectual and multiple disabilities. Journal of Applied Research in Intelectual Disabilities, 28, 249–256. https://doi.org/10.1111/jar.12134.
Knott, F., Lewis, C., & Williams, T. (2007). Sibling interaction of children with autism: Development over 12 months. Journal of Autism & Developmental Disorders, 37, 1987–1995. https://doi.org/10.1007/s10803-006-0347-z.
Kramer, J., Hall, A., & Heller, T. (2013). Reciprocity and social capital in sibling relationships of people with disabilities. Intellectual and Developmental Disabilities, 51, 482–495. https://doi.org/10.1352/1934-9556-51.6.482.
Mertens, D. M. (2003). Mixed methods and the politics of human research: The transformative-emancipatory perspective. In A. Tashakkori & C. Teddlie (Eds.), Handbook of mixed methods in social and behaivoral research (pp. 135–164). Thousand Oaks: Sage.
National Council on Disability. (2011). National disability policy: A progress report - October 2011. Washington, DC: National Council on Disability.
Neely-Barnes, S. L., Marcenko, M. O., & Weber, L. (2008). Community-based, consumer-directed services: Differential experiences of people with mild and severe intellectual disabilities. Social Work Research, 32, 55–64. https://doi.org/10.1093/swr/32.1.55.
Orsmond, G. I., & Seltzer, M. M. (2007). Siblings of individuals with autism or Down syndrome: Effects on adult lives. Journal of Intellectual Disability Research, 51, 682–696. https://doi.org/10.1111/j.1365-2788.2007.00954.x.
Orsmond, G. I., Kuo, H., & Seltzer, M. M. (2009). Siblings of individuals with an autism spectrum disorder: Sibling relationships and wellbeing in adolescence and adulthood. Autism, 13, 59–80. https://doi.org/10.1177/1362361308097119.
Pollard, C. A., Barry, C. M., Freedman, B. H., & Kotchick, B. A. (2013). Relationship quality as a moderator of anxiety in siblings of children diagnosed with autism spectrum disorders or down syndrome. Journal of Child & Family Studies, 22, 647–657. https://doi.org/10.1007/s10826-012-9618-9.
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. https://doi.org/10.1111/j.1468-3156.2009.00599.x.
Rimmerman, A., & Raif, R. (2001). Involvement with and role perception toward an adult sibling with and without mental retardation. Journal of Rehabilitation, 67, 10–15.
Ross, P., & Cuskelly, M. (2006). Adjustment, sibling problems and coping strategies of brothers and sisters of children with autism spectrum disorder. Journal of Intellectual & Developmental Disability, 31, 77–86. https://doi.org/10.1080/13668250600710864.
Rossetti, Z., & Hall, S. (2015). Adult sibling relationships with brothers and sisters with severe disabilities. Research and Practice for Persons with Severe Disabilities, 40, 120–137. https://doi.org/10.1177/1540796915592829.
Rossetti, Z., Lehr, D., Lederer, L., Pelerin, D., & Huang, S. (2015). Parent perceptions of time spent meaningfully by young adults with pervasive support needs. Research and Practice for Persons with Severe Disabilities, 40, 3–19. https://doi.org/10.1177/1540796914566714.
Saxena, M. (2015). Variables that can enhance and complicate sibling caregiving of individuals with intellectual and developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 12, 210–219. https://doi.org/10.1111/jppi.12127.
Stoneman, Z. (2005). Siblings of children with disabilities: Research themes. Mental Retardation, 43, 339–350.
Taylor, J. L., & Hodapp, R. M. (2012). Doing nothing: Adults with disabilities with no daily activiites and their siblings. American Journal on Intellectual and Developmental Disabilities, 117, 67–79. https://doi.org/10.1352/1944-7558-117.1.67.
Tsao, L. L., Davenport, R., & Schmiege, C. (2012). Supporting siblings of children with autism spectrum disorders. Early Childhood Education Journal, 40, 47–54. https://doi.org/10.1007/s10643-011-0488-3.
Tzuriel, D., & Hanuka-Levy, D. (2014). Siblings’ mediated learning strategies in families with and without children with intellectual disabilities. American Journal on Intellectual and Developmental Disabilities, 119, 565–588. https://doi.org/10.1352/1944-7558-119.6.565.
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, 113–120. https://doi.org/10.2511/rpsd.30.3.113.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Funding
This was unfunded research.
Ethical Approval
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
This article does not contain any studies with animals performed by any of the authors.
Informed Consent
Informed consent was obtained from all individual participants included in the study.
Conflict of Interest
Author A declares that he has no conflict of interest. Author B declares that he has no conflict of interest. Author C declares that she has no conflict of interest.
Rights and permissions
About this article
Cite this article
Rossetti, Z., Harbaugh, A.G. & Hall, S.A. Patterns of Adult Sibling Role Involvement with Brothers and Sisters with Intellectual and Developmental Disabilities. J Dev Phys Disabil 30, 527–543 (2018). https://doi.org/10.1007/s10882-018-9600-6
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10882-018-9600-6