{"id":687,"date":"2024-11-20T23:40:31","date_gmt":"2024-11-20T23:40:31","guid":{"rendered":"https:\/\/earlychildhoodresearch.csu.domains\/early-childhood-voices-conference-2024\/?p=687"},"modified":"2024-11-20T23:45:20","modified_gmt":"2024-11-20T23:45:20","slug":"ecv2024-451","status":"publish","type":"post","link":"https:\/\/earlychildhoodresearch.csu.domains\/early-childhood-voices-conference-2024\/ecv2024-451\/","title":{"rendered":"ECV2024-451 – Harnessing the power of lived experience by involving adults with childhood onset disabilities in research: Learnings from a researcher and adult with developmental language disorder"},"content":{"rendered":"\t\t
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Presentation - ECV2024-451<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Harnessing the power of lived experience by involving adults with childhood onset disabilities in research: Learnings from a researcher and adult with developmental language disorder<\/h1>\n

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Lucy Rodgers<\/strong>, City University of London and Sussex Community NHS Foundation Trust, UK (lucy.rodgers@city.ac.uk)
Sophie Franks<\/strong>, Expert with Lived Experience, UK (sophfranks80@outlook.com)<\/p>\n

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Background: <\/strong>We are co-designing a new intervention for preschool children with co-occurring features of developmental language disorder (DLD) and Speech Sound Disorder (SSD). The project steering group consists of professionals and people with lived experience, including an adult with DLD (Sophie, co-author). DLD in adulthood can be characterised by difficulties with understanding and using spoken language, as well as broader difficulties in areas such as working memory.<\/p>\n

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Aims: <\/strong>To adapt the co-design process to meaningfully integrate the experiences and opinions of an adult with a childhood onset disability into a new, complex, theory-based intervention for children with co-occurring DLD\/SSD features.<\/p>\n

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Method:<\/strong> An impact log has been used throughout the intervention development process to monitor involvement. Driscoll\u2019s \u2018what\u2019 reflective cycle has been used (\u2018what? \u2013 so what? \u2013 now what?\u2019) by the researcher (Lucy) and Sophie to identify barriers and enablers to participation during the co-design process so that solutions can be identified and acted on.
Ethical approval \u2013 City University of London (application ID ETH2223-1673).<\/p>\n

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Results:<\/strong> Enablers include other steering group members being sympathetic and understanding DLD, and the opportunity for individual (as well as group) meetings with the researcher. Barriers include having to process large amounts of information and remembering meeting times. Helpful strategies include providing adapted \u2018DLD friendly\u2019 written information and sending meeting reminders.<\/p>\n

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Conclusions:<\/strong> Adults with childhood onset disabilities, including those with DLD, bring valuable lived experience to paediatric intervention research. However, appropriate planning and individualised support need to take place to enable full participation.<\/p>\n

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Implications for children and families:<\/strong> You will see an example of how I (Sophie \u2013 an adult with DLD) have influenced important research. You may want to take part in research after hearing more about my experience.<\/p>\n

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Implications for practitioners:<\/strong> You will have practical ideas for how to involve adults with childhood onset communication needs in research or professional projects.<\/p>\n

Funding:<\/span> This research was funded by the Wellcome Trust (Grant number 223500\/Z\/21\/Z).<\/p>\n

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Key words<\/strong>: Children\u2019s voices, communication, health, innovation<\/p>\n

This presentation relates to the following <\/strong>United Nations Sustainable Development Goals<\/strong><\/a>:<\/strong><\/p>\n

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