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The Power of Partnership: Adapting Early Language Intervention for Children with Down Syndrome through Family-Researcher Collaboration

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Title: The Power of Partnership: Adapting Early Language Intervention for Children with Down Syndrome through Family-Researcher Collaboration
Language: English
Authors: Kirstie Hartwell, Emma Pagnamenta, Vesna Stojanovik (ORCID 0000-0001-6791-9968), Rebecca Baxter, Kelly Burgoyne (ORCID 0000-0001-8765-5154)
Source: International Journal of Language & Communication Disorders. 2025 60(6).
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 13
Publication Date: 2025
Document Type: Journal Articles
Reports - Research
Descriptors: Intervention, Parent Role, Down Syndrome, Young Children, Language Impairments, Program Effectiveness, Researchers, Family Involvement, Cooperation, Foreign Countries, Language Skills
Geographic Terms: United Kingdom (England)
DOI: 10.1111/1460-6984.70139
ISSN: 1368-2822
1460-6984
Abstract: 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.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1489800
Database: ERIC
FullText Text:
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  Data: The Power of Partnership: Adapting Early Language Intervention for Children with Down Syndrome through Family-Researcher Collaboration
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  Data: <searchLink fieldCode="AR" term="%22Kirstie+Hartwell%22">Kirstie Hartwell</searchLink><br /><searchLink fieldCode="AR" term="%22Emma+Pagnamenta%22">Emma Pagnamenta</searchLink><br /><searchLink fieldCode="AR" term="%22Vesna+Stojanovik%22">Vesna Stojanovik</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-6791-9968">0000-0001-6791-9968</externalLink>)<br /><searchLink fieldCode="AR" term="%22Rebecca+Baxter%22">Rebecca Baxter</searchLink><br /><searchLink fieldCode="AR" term="%22Kelly+Burgoyne%22">Kelly Burgoyne</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-8765-5154">0000-0001-8765-5154</externalLink>)
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  Data: <searchLink fieldCode="SO" term="%22International+Journal+of+Language+%26+Communication+Disorders%22"><i>International Journal of Language & Communication Disorders</i></searchLink>. 2025 60(6).
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  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
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  Data: 13
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  Data: <searchLink fieldCode="DE" term="%22Intervention%22">Intervention</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Role%22">Parent Role</searchLink><br /><searchLink fieldCode="DE" term="%22Down+Syndrome%22">Down Syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Young+Children%22">Young Children</searchLink><br /><searchLink fieldCode="DE" term="%22Language+Impairments%22">Language Impairments</searchLink><br /><searchLink fieldCode="DE" term="%22Program+Effectiveness%22">Program Effectiveness</searchLink><br /><searchLink fieldCode="DE" term="%22Researchers%22">Researchers</searchLink><br /><searchLink fieldCode="DE" term="%22Family+Involvement%22">Family Involvement</searchLink><br /><searchLink fieldCode="DE" term="%22Cooperation%22">Cooperation</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Language+Skills%22">Language Skills</searchLink>
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  Data: <searchLink fieldCode="DE" term="%22United+Kingdom+%28England%29%22">United Kingdom (England)</searchLink>
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  Data: 10.1111/1460-6984.70139
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  Data: 1368-2822<br />1460-6984
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: 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.
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  Data: 2025
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      – SubjectFull: United Kingdom (England)
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