Peer-reviewed article
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 ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study explores how children could be meaningfully included in developing healthcare guidelines in the Netherlands. Researchers interviewed 24 stakeholders and reviewed existing practices, finding that children are currently rarely involved in guideline development because the system prioritizes speed, rigid processes, and scientific evidence over children's perspectives. The authors propose that a future system would need to be more flexible, treat children as capable contributors, and allocate time for genuine interaction with them. The study found few examples of child participation in guideline development globally and suggests that fundamental changes to how the system operates are necessary.
Key points
- Children are currently barely involved in healthcare guideline development despite their right to participate in decisions affecting them
- The current guideline development system is characterised by high-speed, rigid processes that rely heavily on scientific evidence and do not take children seriously
- A future system with meaningful child participation would require flexibility, time for interaction with children, and recognition of children as capable contributors
- Few examples of child participation in guideline development exist worldwide, suggesting this is a systemic problem in Western countries
- The authors recommend creating discussion arenas for joint vision-building and setting up transition experiments led by front-runners willing to integrate children's perspectives
Limitations
This study describes a systemic problem and proposes theoretical solutions but does not evaluate the effectiveness of any actual intervention for child participation. It reflects on experiences and ideas in one country (Netherlands) and may not fully represent challenges or opportunities in other contexts, particularly in low- and middle-income countries.
Abstract
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.