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Parr J, Pennington L, Taylor H, et al. Parent-delivered interventions used at home to improve eating, drinking and swallowing in children with neurodisability: the FEEDS mixed-methods study. Southampton (UK): NIHR Journals Library; 2021 Mar. (Health Technology Assessment, No. 25.22.)

Appendix 1Parent advisory group terms of reference

Role of the group

The role of the PAG is to advise on the research activities conducted as part of the research project ‘FEEDS: Focus on Early Eating, Drinking and Swallowing’. This project aims to answer the question ‘What interventions, which could be delivered at home by parents, are available to improve eating in young children with neurodisability and are suitable for investigation in pragmatic trials?’.

Responsibilities

  • Provide advice on issues that affect parents who have a child with developmental difficulties who experience EDSD.
  • Provide a forum for discussion of study results.
  • Help to guide the development of future stages of the project (e.g. focus groups, Delphi survey and consensus workshops).
  • Provide feedback on the acceptability and feasibility of proposed trial designs, including:
    • reviewing appropriate documents
    • identifying, discussing and addressing issues of common concern
    • exchanging ideas, strengthening skills and sharing examples.

Membership

This group is for parents of children with a developmental difficulty who experience EDSD, or have in the past. There will be between six and eight members. Membership of this group is by invitation only and will last until July 2019.

Accountability

The group facilitators (Johanna Smith and Deborah Garland) will report on the activities of the group to members of the FEEDS research team.

Review

On an as-needed basis, the group will review the relevance and value of its work.

Working methods/ways of working

There will be a shared learning approach. Participation in this group will be primarily through face-to-face meetings and e-mails, in which information and resources will be shared. Therefore, group members must use their own e-mail account to access the content and participate alongside the face-to-face meetings. We ask that you respect other group members’ privacy and do not discuss or share the content of the group with non-members. Johanna Smith, Deborah Garland and Helen Taylor from Newcastle University will be the responsible for organising the face-to-face meetings and the administration of e-mails.

Copyright © Queen’s Printer and Controller of HMSO 2021. This work was produced by Parr et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.
Bookshelf ID: NBK569076
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