Change in self-determination-related constructs in persons with severe or profound intellectual and multiple disabilities in the context of transitions

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Abstract

Background: This study explored the changes in self-determination-related constructs during transitions in the lives of persons with severe or profound intellectual and multiple disabilities. Method: Questionnaires about autonomy support, basic psychological need expressions, and subjective well-being were filled out twice by family caregivers who foresaw an important transition in the near future ( N = 40; pre-post design). Results: Average changes in outcomes across a period of 6-13 months were not statistically significant. Reliable change was observed for 5.6 to 24% of individuals, depending on the outcome variable. Caregiver engagement in and period of impact of the transition, as well as prior expectations, were not associated with these changes. Conclusions: Self-determination-related constructs appear robust against life transitions for most persons with complex support needs. From the caregivers' perspective, improvements and deteriorations were unexpected, underscoring the need for a better understanding of the role of context for self-determination in this population.

Original languageEnglish
Number of pages18
JournalJournal of Intellectual Disabilities
DOIs
Publication statusE-pub ahead of print - 30 Jan 2025

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by The Netherlands Organisation for Health Research and Development (ZonMw) Nationaal Programma Gewoon Bijzonder, grant number 845004005; and Stichting Wetenschappelijk Onderzoek of \u2019s Heeren Loo, The Netherlands (i.e., partial funding).

FundersFunder number
Stichting Wetenschappelijk Onderzoek of ’s Heeren Loo
ZonMw845004005

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