Co-Authoring and Reporting on Lived Experience Engagement in Mental Health and/or Substance Research: A Qualitative Study and Guidance Document.

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Tác giả: Vivien Cappe, Lisa D Hawke, Melissa Hiebert, Sean Kidd, Kerry Kuluski, Charlotte Munro, Natasha Y Sheikhan, Mary Rose van Kesteren

Ngôn ngữ: eng

Ký hiệu phân loại:

Thông tin xuất bản: England : Health expectations : an international journal of public participation in health care and health policy , 2025

Mô tả vật lý:

Bộ sưu tập: NCBI

ID: 699330

 INTRODUCTION: There is a move towards engaging people with lived experience and families (PWLE/F)-also referred to as PWLE/F engagement-in mental health and/or substance use research. However, PWLE/F engagement is inadequately reported on in mental health and/or substance use research papers. OBJECTIVE: To understand what PWLE/F and researchers perceive are important components to report on related to engagement in mental health and/or substance use research. METHODS: This study included a qualitative description study underpinned by pragmatism. Data were collected through virtual interviews with 13 PWLE/F and 12 researchers across Canada and analysed using template analysis. The results were used to develop a reporting guidance document for engagement in mental health and/or substance use research. RESULTS: The results from the template analysis were structured through the following themes: (1) establishing the need for a guidance document
  (2) aspects of engagement to report and reflect on
  (3) guidance around co-authorship with PWLE/F
  (4) practical tips for reporting on engagement and (5) considerations for journals. Participants identified a need for tailored guidance that is flexible and reflective, yet can promote transparency, accountability and learning in the field. A reporting guidance document was developed for engagement in mental health and/or substance use research that balances flexibility and standardisation while incorporating reflection into reporting. Guidance around co-authorship with PWLE/F partners was also included. CONCLUSION: The guidance document is intended to be used as a roadmap to help guide authors to meaningfully write about engagement without the rigid boundaries of a reporting guideline. We encourage research teams that engage PWLE/F in mental health and/or substance use research to consider using the guidance document as they write up their work. PATIENT AND PUBLIC INVOLVEMENT: PWLE/F members were engaged throughout the study from conception to manuscript production. This included a PWLE partner on the doctoral committee and a Lived Experience Advisory Group consisting of two PWLE and one family partner.
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