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Joint production of research priorities to improve the lives of those with childhood onset conditions that impair learning: the James Lind Alliance Priority Setting Partnership for ‘learning difficulties’
  1. Ai Keow Lim1,
  2. Sinead Rhodes1,
  3. Katherine Cowan2,
  4. Anne O'Hare1
  1. 1 Salvesen Mindroom Research Centre, Department of Child Life and Health, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK
  2. 2 The James Lind Alliance, NIHR Evaluation Trials and Studies Coordinating Centre, Southampton, UK
  1. Correspondence to Dr Ai Keow Lim; ak.lim{at}ed.ac.uk

Abstract

Objectives To engage children and young people with conditions that impair learning, their parents/carers and the health, education, social work and third sector professionals to identify and prioritise research questions for learning difficulties.

Design Prospective surveys and consensus meeting guided by methods advocated by the James Lind Alliance.

Setting Scotland.

Methods The Priority Setting Partnership came together through discussion and collaboration between the University of Edinburgh, Scottish charity The Salvesen Mindroom Centre and partners in the National Health Service, education services and the third sector. A steering group was established. Charity and professional organisations were recruited. Suggested questions were gathered in an open survey and from research recommendations by the National Institute for Health and Care Excellence and Scottish Intercollegiate Guidelines Network Guidance. Suggested questions and recommendations were summarised into 40 indicative research questions. These indicative questions were verified as uncertainties from research evidence. Respondents each nominated up to 10 questions as research priorities in an interim survey. The 25 highest-ranked questions from the interim survey were prioritised at the final priority setting workshop.

Participants 367 people submitted suggestions (29 individuals affected by learning difficulties, 147 parents/carers and 191 professionals). 361 people participated in the interim prioritisation (41 individuals, 125 parents/carers and 195 professionals). 25 took part in the final workshop (5 young people, 6 parents and 14 professionals).

Results Top three research priorities related to (1) upskilling education professionals, (2) best education and community environment and (3) multidisciplinary practice and working with parents. Top 10 included best early interventions, upskilling health, social and third sector professionals, support for families, identifying early signs and symptoms, effective assessments and strategies against stigma and bullying and to live independent lives.

Conclusions Results will now be a resource for researchers and funders to understand and resolve learning difficulties and improve the lives of those affected with childhood onset conditions that result in learning difficulties.

  • children and young people
  • impairments in learning
  • learning difficulties
  • learning disabilities
  • learning disorder
  • neurodevelopmental disorders

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Footnotes

  • Contributors All authors (AKL, SR, KC and AO'H) made substantial contributions to the conduct of the Priority Setting Partnership, including promoting the survey and the acquisition, analysis and interpretation of data for the work. The steering group oversaw all aspects of the work. The project was managed by The Salvesen Mindroom Research Centre (AKL, SR and AO'H). AKL, SR and AO'H reviewed the research recommendations, coded the survey submissions and checked the uncertainties. All authors (AKL, SR, KC and AO'H) were involved in drafting and revising the papers, and approved the final version.

  • Funding This project was funded by The Salvesen Mindroom Centre.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Further data regarding the source of the original submissions to the survey coded under each indicative question are available as online supplementary file 5 and in the learning difficulties (Scotland) page on the JLA website (http://www.jla.nihr.ac.uk/priority-setting-partnerships/learning-difficulties-scotland/downloads/Spreadsheet-Research-Priorities-for-Learning-Difficulties-PSP.pdf).

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