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. 2024 Nov;37(6):e13307.
doi: 10.1111/jar.13307.

Parent Perspectives on Parent-Mediated Intervention for Young Children With Down Syndrome

Madison M Walsh  1   2 , Kaylyn Van Deusen  1   2 , Miranda E Pinks  1   2 , Benedetta Ceci  3 , Susan Hepburn  1 , Nathanial R Riggs  1   2 , Francesca Pulina  3 , Chiara Marcolin  3 , Sara Onnivello  3 , Sara Colaianni  3 , Bethany Gray  4 , Lisa A Daunhauer  1 , Silvia Lanfranchi  3 , Deborah J Fidler  1   2
Affiliations

Parent Perspectives on Parent-Mediated Intervention for Young Children With Down Syndrome

Madison M Walsh et al. J Appl Res Intellect Disabil. 2024 Nov.

Abstract

Background: Parent-mediated intervention (PMI) is a potentially scalable approach for tailored interventions in neurogenetic conditions like Down syndrome (DS). Because PMIs require ongoing parent engagement, they must be developed in alignment with the needs of intended users. The present study examined caregiver opinions and preferences to inform the development of syndrome-informed interventions for children with DS.

Method: Parents of children with DS (n = 34) participated in focus groups discussing PMI. Interviews were transcribed and a thematic analysis was applied to code the data.

Results: Three themes were identified: advantages of PMI, disadvantages of PMI and preferred features of PMI. To align with parent preferences, future PMIs for children with DS should require a brief time commitment, blend intervention activities into daily routines and include family members in activities.

Conclusions: Findings have implications for developing novel interventions to support early development in children with DS and other neurogenetic conditions.

Keywords: Down syndrome; focus groups; intervention; parents.

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Conflict of interest statement

Conflicts of Interest

The authors declare no conflicts of interest.

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