Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority.

Author(s)

  • Christopher Morris
  • Doug Simkiss
  • Mary Busk
  • Maureen Morris
  • Amanda Allard
  • Jacob Denness
  • Astrid Janssens
  • Anna Stimson
  • Joanna Coghill
  • Kelly Robinson
  • Mark Fenton
  • Katherine Cowan

Reference

British Academy of Childhood Disability (BACD) 2015. Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership, BMJ 2015. Pages 1-14.

Financial support

  • British Academy of Childhood Disability (BACD)

Applied research areas

Thematic issues

Impairment

Geographical areas

Author's summary

Objectives To engage young people, parent carers and clinicians in a systematic process to identify and prioritise research questions regarding ways to improve the health and well-being of children and young people with neurodisability.
Results The top three research priorities related to (1) establishing the optimal frequency and intensity (dose) for mainstream therapies, (2) means for selecting and encouraging use of communication strategies and (3) ways to improve children's attitudes towards disability. The top 10 included evaluating interventions to promote mobility, self-efficacy, mental health, continence, physical fitness, educational inclusion and reduce impacts of sleep disturbance.

Conclusions
The methodology provided a systematic and transparent process to identify research priorities that included stakeholders that have typically not contributed to setting the research agenda. The top 10 and other topics identified provide a resource for researchers and agencies that fund research.

Resource Center comment

Cette recherche a été menée pour établir et prioriser les besoins en termes de recherche concernant la santé et le bien-être des enfants handicapés. Il intéressera donc particulièrement les chercheurs qui désirent continuer un travail de recherche sur le sujet. Ce document représente un intérêt puisqu’il a impliqué à fois les personnes concernées, les parents et les professionnels pour établir ensemble les besoins en termes de recherche, autour d’une méthodologie rigoureuse. Cependant, le nombre d’enfants impliqués dans le processus de recherche est assez faible, ce qui constitue une limite de la recherche, tout comme le fait que les conclusions de la recherche ne concernent pas seulement la recherche appliquée.

[ENG]
This research was conducted to establish and prioritize needs in terms of research on the health and well-being of children with disabilities. It will  particularly interest researchers who wish to continue research with the same topic. This document is important since it involve several parties (parents and professionals) to establish the needs in terms of research around a rigorous methodology. Concerning the limitation’s of the research,  the number of children involved in the research process is quite low, same as the research findings which are not just about applied research.

Download