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March 10, 2026Children & Society0 citationsOpen Access

The Voice of a Reference Group in Research With Children

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MSMalin StenssonKHKarina HuusFLFrida Lygnegård

Key Points

  • The research aims to explore perceptions of inclusive research among a reference group in Sweden.
  • Conducted 10 interviews with reference group participants
  • Analyzed interview data using thematic analysis
  • Identified three key themes: Information, Motivation, and Participation
  • Participants emphasized the need for clear communication in research
  • Motivation among participants was linked to defined roles and structural adaptations
  • Power dynamics were recognized as a barrier to true participation in research

Abstract

ABSTRACT The aim was to describe how inclusive research was perceived by participants in a reference group within the Swedish research programme Mental Health and Participation in Habilitation for Children and Adolescents with Disabilities. The experience of the reference group was explored through 10 interviews analysed with thematic analysis. Three themes were identified: (1) Information; (2) Motivation and (3) Participation. Inclusive research requires clear communication, defined roles, structural adaptations and addressing power dynamics. This study emphasises the importance of involving children and individuals with disabilities as well as their primary caregivers in research, ultimately making research more inclusive and representative.

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Cite This Study

Stensson et al. (2026) studied this question.

synapsesocial.com/papers/69af94e870916d39fea4c022https://doi.org/10.1111/chso.70034
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