The Power of Partnership: Adapting Early Language Intervention for Children With Down Syndrome Through Family-Researcher Collaboration.

BACKGROUND: Parents are uniquely placed to support their child's development. Interventions which are designed to be delivered by parents therefore hold considerable promise, particularly for children with neurodevelopmental conditions that are associated with particular developmental strengths and challenges. AIMS: This study worked in partnership with families from the Down syndrome community to adapt an evidence-based early language intervention for children with Down syndrome. METHODS AND PROCEDURES: Six families with a 3- to 5-year-old child with Down syndrome participated in this mixed-methods exploratory study. Guided by aspects of Community-Based Participatory Research and Design-Based Research, iterative cycles of design, implementation, analysis, and re-design were implemented to produce an adapted intervention programme. Data were collected using record forms, surveys, observations, and focus groups. OUTCOMES AND RESULTS: Findings showed many aspects of the original programme were acceptable and feasible for families, but important adaptations were identified, including enhancing repetition and consolidation, reducing time pressures, tailoring to individual needs, smaller steps for learning, supporting engagement, and increasing visual support. Adapting the programme in these ways enhanced adherence, enjoyment and the child's active engagement. CONCLUSIONS AND IMPLICATIONS: This study is the first to report the process of adapting an existing language intervention for people with disabilities and highlights the value of working with families to identify the best ways to support their needs. Our approach shows promise for supporting language development in this population and serves as a foundation for future research that aims to develop novel interventions. WHAT THIS PAPER ADDS: What is already known on the subject Speech and language difficulties are well-documented in individuals with Down syndrome, and may benefit from intervention to enable individuals to reach their full potential. Parent-delivered models of intervention hold promise for supporting oral language skills, but very few evidence-based interventions exist for this population. What this paper adds to the existing knowledge Parents of young children with Down syndrome are able to deliver early language intervention in ways which encourage their child's active involvement and enjoyment. Parents identified a range of ways in which early language intervention could be adapted to support implementation and effectiveness. What are the potential or actual clinical implications for this work? Parents are important partners in early language intervention for children with Down syndrome, with much to contribute to the design and delivery of intervention. Findings from this study will guide researchers and clinicians in the process of adapting interventions for this population, with the aim of improving outcomes for children and their families.