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Facilitating non-tokenistic user involvement in research.

Grace Inga Romsland1,2, Kate Louise Milosavljevic2, Tone Alm Andreassen3

  • 11Sunnaas Rehabilitation Hospital, Bjørnemyrveien, NO-1450 Nesoddtangen, Norway.

Research Involvement and Engagement
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Summary
This summary is machine-generated.

This study explores how to avoid tokenism and promote active user involvement in research. Key strategies include defining the collaborative arena and designing research counseling to ensure equitable power dynamics and respect for participants.

Keywords:
Patient participationRehabilitationResearchTokenismUser involvement

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Area of Science:

  • Social Sciences
  • Health Services Research
  • Participatory Research

Background:

  • Growing user activism necessitates addressing tokenism in research user involvement.
  • Ensuring genuine user engagement is crucial for research validity and ethical practice.
  • This study focuses on a Norwegian research project on traumatic injury rehabilitation.

Purpose of the Study:

  • To identify methods for avoiding tokenism in user involvement.
  • To explore strategies for stimulating active user engagement in research.
  • To analyze how to foster genuine collaboration between researchers and users.

Main Methods:

  • Employed an ethnographic approach with participant observation over five years.
  • Analyzed 472 pages of transcribed meeting recordings and 340 pages of project documents.
  • Utilized thematic analysis, including decontextualizing, flagging, and re-contextualizing.

Main Results:

  • Two facilitation categories emerged: defining the collaborative arena and designing research counseling.
  • Preparing participants and valuing user criticism are key to active involvement.
  • Addressing asymmetric relationships and power dynamics is essential for equitable participation.

Conclusions:

  • The collaborative arena and counseling are crucial for curbing power imbalance and stimulating involvement.
  • Non-tokenistic involvement requires respect for participants and their contributions.
  • Findings offer practical methods for researchers seeking active, non-tokenistic user engagement.