Understanding decision making among individuals with intellectual and developmental disabilities (IDD) and their siblings
Files
Accepted manuscript
Date
2019-02-01
Authors
Burke, Meghan M.
Lee, Chung Eun
Hall, Sarah A.
Rossetti, Zach
Version
Accepted manuscript
OA Version
Citation
Meghan M. Burke, Chung Eun Lee, Sarah A. Hall, Zach Rossetti. 2019. "Understanding Decision Making Among Individuals With Intellectual and Developmental Disabilities (IDD) and Their Siblings." INTELLECTUAL AND DEVELOPMENTAL DISABILITIES, Volume 57, Issue 1, pp. 26 - 41. https://doi.org/10.1352/1934-9556-57.1.26
Abstract
Many siblings anticipate fulfilling caregiving roles for their brothers and sisters with
intellectual and developmental disabilities (IDD). Given these roles and the importance of
supported decision-making, it is crucial to understand how individuals with IDD and their
siblings make decisions. Using dyadic interviews, we examined the perspectives of nine sibling dyads (N = 18) about decision-making in relation to self-determination, independent living, and employment. The ages of participants ranged from 19 to 57. Data were analyzed using constant comparative analysis to identify themes. Decision-making was characterized by: parents and siblings primarily identifying courses of action; the probability of respective consequences based on the person-environment fit; and the role of the sibling in making the final decision. Characteristics related to the individual with IDD, the family, the sibling, and the environment impacted decision-making. Individuals with IDD were more likely to make their own decisions about leisure activities, however, siblings were more likely to make formal decisions for their brothers and sisters.