Exploring possibilities for child participation in guideline development: The need for a fundamental reconsideration and reconfiguration of the system

Simone Harmsen*, Jacqueline E.W. Broerse, Carina A.C.M. Pittens

*Corresponding author for this work

Research output: Contribution to JournalArticleAcademicpeer-review

Abstract

While the right of children to be involved in decisions that concern them has been widely recognised, they are currently barely involved in guideline development in healthcare. This paper aims to explore what a future guideline development system in which children are meaningfully involved might look like and to reflect on the transition required to achieve this. We used a systems innovation perspective, exploring child participation within its systemic context and complexity. To this end, we conducted 24 interviews with various actors, about their ideas on and experiences with child participation in guideline development in the Dutch system (between August 2018 and September 2020), complemented with a scoping review. The current system is characterised by a high-speed, rigid process that relies heavily on scientific evidence. Children are usually not included or taken seriously. The contours of a system in which children are meaningfully involved would differ markedly: children would be considered capable and taken seriously, and the guideline development process would be flexible, with time for interaction with children and discussion about the implications of their perspectives. We encountered few examples of child participation in guideline development worldwide, and believe our results are indicative of the situation in other Western countries. We propose the following actions: (1) Development of a discussion arena to create a joint vision on the aim of guideline development and subsequently the role of child participation therein. (2) Set up of transition experiments unbound by the current constellation, conducted by front-runners who are open to children's perspectives. These are essential to clarify pathways towards a future in which the voices of children are meaningfully integrated. It remains to be seen, however, whether there are sufficient actors who feel the necessary urgency for change.

Original languageEnglish
Pages (from-to)294-316
JournalChildren and Society
Volume38
Issue number2
Early online date2 Mar 2023
DOIs
Publication statusPublished - Mar 2024

Bibliographical note

Funding Information:
This study was funded by The Netherlands Organisation for Health Research and Development (ZonMw), under funding no. 732000205, as part of the programme ‘Richtlijnen Jeugdgezondheidszorg 2013‐2018’ (no. 732000000).

Publisher Copyright:
© 2023 The Authors. Children & Society published by National Children's Bureau and John Wiley & Sons Ltd.

Keywords

  • child participation
  • client participation
  • guideline development
  • systems transition
  • transition management

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