Family Role in the Development of Self-Determination for Youth with Intellectual and Developmental Disabilities: A Scoping Review

• Published in: Intellectual and developmental disabilities Vol. 59; no. 4; pp. 315 - 334
• Main Authors: Dean, Evan E, Kirby, Anne V, Hagiwara, Mayumi, Shogren, Karrie A, Ersan, Deniz Tekin, Brown, Stephanie
• Format: Journal Article
• Language: English
• Published: Washington American Association on Intellectual and Developmental Disabilities 01.08.2021; American Association of Intellectual & Developmental Disabilities
• Subjects: Adolescents; Autism; Autism Spectrum Disorders; Caregivers; Case Studies; Coding; Decision making; Definitions; Developmental Disabilities; Family Attitudes; Family Involvement; Family Role; Goal Orientation; Individual Development; Intellectual disabilities; Intellectual Disability; Interpersonal Competence; Interrater Reliability; Learner Engagement; Literature Reviews; Middle Schools; Parents; Problem Solving; Psychological Needs; Randomized Controlled Trials; Research Methodology; Researchers; Self Advocacy; Self Determination; Systematic review; Young adults; Youth
• ISSN: 1934-9491; 1934-9556
• DOI: 10.1352/1934-9556-59.4.315

The development of self-determination is promoted by supportive contexts during adolescence; families are a key part of this context. In adolescent populations, research suggests families can support self-determination in a number of ways, yet less is known about how self-determination is promoted within families of youth with intellectual and developmental disabilities (IDD). To address this knowledge gap, we conducted a scoping review to examine the existing evidence pertaining to the role families of youth with IDD play in supporting the development of self-determination. A review of 24 publications revealed that existing research has focused on understanding family perspectives on self-determination, but there is a lack of studies investigating how families provide supports for self-determination in the home context for youth with IDD. Additionally, little intervention work has focused on supporting families to promote self-determination. Based on the findings, implications for future research and practice are provided.