Background Our project aims to identify the top 10 research priorities for learning difficulties in children and young people (CYP). The project is a collaboration between Scottish charity The Salvesen Mindroom Centre (SMC), the SMC Research Centre within the University of Edinburgh, and the James Lind Alliance (JLA) (http://www.jla.nihr.ac.uk/priority-setting-partnerships/learning-difficulties-scotland/). The definition of learning difficulties that we are working to is ‘a problem of understanding or an emotional difficulty that affects a person’s ability to learn, get along with others, and follow convention’ (http://www.mindroom.org/index.php/about_us).
Methods Following standard JLA methodology, we asked people from across Scotland who have learning difficulties, their families, and the professionals working alongside them, to tell us what they would want researchers to find out about learning difficulties using online and paper survey tools. Additional potential research priorities were gathered through review of NICE and Scottish Intercollegiate Guidelines Network (SIGN) research recommendations. After removing the out-of-scope submissions, the remaining submissions were allocated into categories. Duplicates were combined. Potential research priorities were then verified against up-to-date, relevant and reliable systematic reviews and guidelines to confirm ongoing uncertainty. Future work will include an interim survey to rank the priorities and a final stakeholder workshop to identify and rank the top 20 questions.
Results The first survey was completed in 2017. We received 828 questions from 367 respondents, with 3% coming from CYP with learning difficulties, 5% adults who experienced learning difficulties as a child, 40% parents/carers, and 52% professionals. An innovative aspect of this project is the cross-sector input from education (37%), health (57%) and third sector (7%) professionals. Out of the 828 questions, 761 were classified as in-scope. The 761 questions were summarised into 40 questions under 9 themes. Respondents from 28 out of 32 Scottish local authorities participated in the survey. 32% of the CYP with learning difficulties and adults who experienced learning difficulties as a child, 8% of the parents and carers (postcode of residence), and 10% of the professionals (work postcode) were from the 20% Scottish Index of Multiple Deprivation most deprived data zones in Scotland.
Conclusion The James Lind Alliance methodology provided a systematic and transparent approach to identifying research priorities that included people who have learning difficulties, families, and professionals who have typically not contributed to setting the research agenda. The top 10 research priorities will inform future research work into learning difficulties, including the work of the SMC Research Centre.
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