title: End-user involvement in a systematic review of quantitative and qualitative research of non-pharmacological interventions for attention deficit hyperactivity disorder delivered in school settings: reflections on the impacts and challenges.
abstract: The benefits of end-user involvement in health-care research are widely recognized by research agencies. There are few published evaluations of end-user involvement in systematic reviews.
  
  
  
  (i) Describe end-user involvement in a complex mixed-methods systematic review of ADHD in schools, (ii) reflect on the impact of end-user involvement, (iii) highlight challenges and benefits experienced and (iv) provide suggestions to inform future involvement.
  
  
  
  End-users were involved in all stages of the project, both as authors and as members of an advisory group. In addition, several events were held with groups of relevant end-users during the project.
  
  
  
  End-user input (i) guided the direction of the research, (ii) contributed to a typology of interventions and outcomes, (iii) contributed to the direction of data analysis and (iv) contributed to the robustness of the syntheses by demonstrating the alignment of interim findings with lived experiences. Challenges included (i) managing expectations, (ii) managing the intensity of emotion, (iii) ensuring that involvement was fruitful for all not just the researcher, (iv) our capacity to communicate and manage the process and (v) engendering a sense of involvement amongst end-users.
  
  
  
  End-user involvement was an important aspect of this project. To minimize challenges in future projects, a recognition by the project management team and the funding provider that end-user involvement even in evidence synthesis projects is resource intensive is essential to allow appropriate allocation of time and resources for meaningful engagement.
authors.affiliation: NIHR CLAHRC South West Peninsula (PenCLAHRC), University of Exeter, Exeter, UK. j.thompson-coon@exeter.ac.uk.
authors.forename: Jo Thompson
authors.identifier: 0000-0002-5161-0234
authors.initials: JT
authors.lastname: Coon
authors.affiliation: Third Gap Research Group, University of Exeter, Exeter, UK.
authors.forename: Ruth
authors.initials: R
authors.lastname: Gwernan-Jones
authors.affiliation: NIHR CLAHRC South West Peninsula (PenCLAHRC), University of Exeter, Exeter, UK.
authors.forename: Darren
authors.initials: D
authors.lastname: Moore
authors.affiliation: Health Service and Population Research Department, Kings College London, London, UK.
authors.forename: Michelle
authors.initials: M
authors.lastname: Richardson
authors.affiliation: Child Health Group, University of Exeter Medical School, University of Exeter, Exeter, UK.
authors.forename: Catherine
authors.initials: C
authors.lastname: Shotton
authors.affiliation: Babcock LDP, Exeter, UK.
authors.forename: Will
authors.initials: W
authors.lastname: Pritchard
authors.affiliation: Peninsula Cerebra Research Unit (PenCRU), Exeter, UK.
authors.forename: Christopher
authors.initials: C
authors.lastname: Morris
authors.affiliation: NIHR CLAHRC South West Peninsula (PenCLAHRC), University of Exeter, Exeter, UK.
authors.forename: Ken
authors.initials: K
authors.lastname: Stein
authors.affiliation: Child Health Group, University of Exeter Medical School, University of Exeter, Exeter, UK.
authors.forename: Tamsin
authors.initials: T
authors.lastname: Ford
mesh_terms: D002648:Child; D006801:Humans; D001289:Attention Deficit Disorder with Hyperactivity / Q000628:therapy; D003256:Community Participation; D003299:Cooperative Behavior; D012108:Research Personnel; D012572:School Health Services / Q000458:organization & administration; D000078202:Systematic Reviews as Topic
keywords: end-user involvement; engagement; methods; systematic review