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Towards the development of an autonomy supportive parenting intervention for children with Down syndrome: intervention targets and parent acceptability
Dissertation

Towards the development of an autonomy supportive parenting intervention for children with Down syndrome: intervention targets and parent acceptability

Kelsey Diane Csumitta
Doctor of Philosophy (Ph.D.), Drexel University
Jun 2024
DOI:
https://doi.org/10.17918/00010702
pdf
Csumitta_Kelsey_20241.47 MB
PDF Embargoed Access, Embargo ends: 31 Aug 2026

Abstract

Down syndrome--Patients--Family relationships Executive functions (Neuropsychology)
Youth with Down syndrome (DS) demonstrate impaired executive functions (EFs), which are tied to important life outcomes such as vocational status. Extensive research on typically developing youth and a few studies on youth with DS have found an association between EFs and autonomy supportive parenting strategies (behaviors that promote child independence). Consequently, coaching parents on how to be more autonomy supportive has the potential to lead to improved child EFs and associated life outcomes. While autonomy supportive parenting interventions have not yet been developed for parents of children with DS, other parent-mediated interventions have shown favorable results. Given the link between autonomy support and child EFs as well as recent promise for parent-mediated interventions, the current project involves two studies which aim to inform the development of a future autonomy supportive parenting intervention for parents of children with DS. Study 1 (consistent with Stage 0 of the NIH Stage Model for Behavioral Intervention Development) examined the relation between parent EFs and autonomy support as a potential intervention target, given documented links between parent EFs, child EFs, and autonomy support. Participants in Study 1 included 10 parents of children with DS who were rated on four aspects of autonomy support while completing a naturalistic puzzle task with their children. Preliminary results did not detect a relation between autonomy support and parent EFs, though further research with larger samples is needed. Study 2 (consistent with Stage 1 of the NIH Stage Model for Behavioral Intervention Development) investigated parent acceptability of a psychoeducational video about autonomy supportive strategies to determine whether key stakeholders were interested in this type of intervention. Participants consisted of a national sample of 64 parents of children with DS. Both quantitative and qualitative measures of stakeholder acceptability revealed parents were positively in favor of autonomy supportive parenting strategies. Parent preferences regarding the format of a future autonomy support intervention (e.g., recorded video or live intervention, virtual or in person, group or individual) were also surveyed, revealing a stronger preference for one-on-one sessions conducted either in person or virtually. Exploratory analyses suggested intervention format preferences (session dose and length) may vary by parent and child characteristics. Taken together, findings suggest that further research into the development of an autonomy supportive parenting intervention for children with DS is warranted.

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