Delirium-related distress in the ICU: A qualitative meta-synthesis of patient and family perspectives and experiences

Abstract When researchers evaluate adult outcomes for individuals with intellectual and/or developmental disabilities (IDD), the perspective of families is not always considered. Parents of individuals with IDD (N = 198) answered an online survey about their definition of a successful transition to adulthood. Content analysis was used to describe themes and ideas present in the responses. Rather than focusing only on developmental tasks of adulthood, such as living independently, being competitively employed, and maintaining friendships, responses reflected a more varied and dynamic view of success in adulthood, taking into account the fit between the person with IDD and his or her environment. As services are developed and implemented for adults with IDD, it is important to consider the full range of goals that families have for their son or daughter's successful transition to adulthood.

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

Intellectual and Developmental Disabilities ◽

10.1352/1934-9556-59.4.315 ◽

2021 ◽

Vol 59 (4) ◽

pp. 315-334

Author(s):

Evan E. Dean ◽

Anne V. Kirby ◽

Mayumi Hagiwara ◽

Karrie A. Shogren ◽

Deniz Tekin Ersan ◽

...

Keyword(s):

Developmental Disabilities ◽

Scoping Review ◽

Self Determination ◽

Future Research ◽

Knowledge Gap ◽

Intellectual And Developmental Disabilities ◽

Family Role ◽

Research And Practice ◽

Family Perspectives ◽

Home Context

Abstract 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.

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