Resource Library

MSSN State of Siblings

The MSSN created a summary brief on siblings of people with disabilities, conveniently translated in multiple languages.

State of Siblings (English)

State of Siblings (Spanish)

State of Siblings (Haitian-Creole)

State of Siblings (Simplify Chinese )

State of Siblings (Traditional Chinese)

Sibling Research

Sibling research is an evolving field of study. The literature on siblings includes clinical research and empirical studies, both qualitative and quantitative, with quantitative studies tending to be more common. Sibling studies have tended to focus on children but there is a growing body of knowledge about adult siblings.

Research articles related to siblings of individuals with disabilities:

• Burke, M. M., Lee, C. E.*, Hall, S., & Rossetti, Z. (2019). Understanding decision making among individuals with intellectual and developmental disabilities (IDD) and their siblings (pdf). Intellectual and Developmental Disabilities, 57, 26-41. doi: 10.1352/1934-9556-57.1.26

• Damodaran, S., Huttlin, E. Lauer, E. & Rubin, E. (2019). Mental Health Trainee Facilitation of Sibling Support Groups: Understanding its Influence on Views and Skills of Family-Centered Care. Academic Psychiatry. View article.

• Hall, S., & Rossetti, Z. (2017). The roles of siblings in the lives of people with severe to profound intellectual and developmental disabilities (pdf). Journal of Applied Research in Intellectual Disabilities, 31, 423-434. doi: 10.1111/jar.12421

• Heller, Tamar, Ph.D. & Ann Kaiser, Ph.D. http://www.siblingleadership.org/research/research-related-to-siblings-of-individuals-with-disabilities/

• Rossetti, Z., Harbaugh, A. G., & Hall, S. (2018). Patterns of adult sibling role involvement with brothers and sisters with intellectual and developmental disabilities (pdf). Journal of Developmental and Physical Disabilities, 30, 527-543. doi: 10.1007/s10882-018-9600-6

• Rossetti, Z., & Hall, S. (2015). Adult sibling relationships with brothers and sisters with severe disabilities (pdf). Research and Practice for Persons with Severe Disabilities, 40, 120-137. doi: 10.1177/1540796915592829

• Rubin, E., Ostrowsky, L., Janopaul-Naylor, E., Sehgal, P., Cama, S., Tanski, E., & Curtin, C. (2018). The sibling support demonstration project: A pilot study assessing feasibility, preliminary effectiveness, and participant satisfaction. Adolescent Psychiatry, 8(1), 48-60. http://dx.doi.org/10.2174/2210676608666180208160524

• Skotko, B.G., Levine, S.P., Goldstein, R. (2011). Having a Brother or Sister with Down Syndrome: Perspectives from Siblings (pdf) . American Journal of Medical Genetics Part A: 155:2348-2359. Press release.

• Skotko, B., & Levine, P. (2006). What the other children are thinking: Brothers and sisters of persons with Down syndrome (pdf) . American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 142C:180-6. Press release.

• Skotko, B.G., Levine, S.P., Macklin, E.A., Goldstein, R.D. (2016). Family perspectives about Down syndrome (pdf) . American Journal of Medical Genetics Part A 170(4): 930–941. Press release.

If you’ve recently published a paper on sibling issues and would like to share it with the MSSN, please contact us.