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.

The following websites contain information about research on the sibling experience:
Families and Autism Research Lab
Department of Occupational Therapy, Boston University
Gael Orsmond, Ph.D.
http://www.bu.edu/aaastudy/

Lifespan Family Research Program
University of Wisconsin – Madison
Waisman Center
Marsha Mailick Seltzer, Ph.D. & Jan S. Greenberg, Ph.D.
http://www.waisman.wisc.edu/family/index.html

Research Related to Siblings of Individuals with Disabilities

Prepared in collaboration with the Sibling Leadership Network
Tamar Heller, Ph.D. & Ann Kaiser, Ph.D.
http://www.siblingleadership.org/research/research-related-to-siblings-of-individuals-with-disabilities/

The Sibling Support Demonstration Project: A Pilot Study Assessing Feasibility, Preliminary Effectiveness, and Participant Satisfaction (pdf)
Emily Rubin*,1, Louis Ostrowsky2, Elizabeth Janopaul-Naylor2, Priya Sehgal2,
Shireen Cama2, Emilie Tanski3 and Carol Curtin1
1University of Massachusetts Medical School, Worcester, Massachusetts, USA; 2Cambridge Health
Alliance, Cambridge, Massachusetts, USA; 3Harvard University, Massachusetts, USA

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

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

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

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

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.