# The perspectives of people with lived experience, families, and researchers with the manuscript writing process in mental health and substance use research: a qualitative study

## TL;DR

This study explores the challenges and experiences of people with lived experience, their families, and researchers when writing academic papers about mental health and substance use research.

## Contribution

The study provides new insights into the collaborative writing process and identifies the need for clearer guidance for inclusive academic publishing in mental health and substance use research.

## Key findings

- People with lived experience faced uncertainty and power imbalances during the writing process.
- Researchers struggled with limited guidance and word constraints when reporting engagement in papers.
- Both groups emphasized the need for structured support to improve co-authorship and reporting practices.

## Abstract

Engaging people with lived experience and their families (PWLE/F) as partners in mental health and substance use research can have a positive impact. One way to understand this engagement process and its impact is by reporting on it in peer-reviewed papers. However, little is known about the experiences of PWLE/F and researchers regarding the reporting of engagement activities in peer-reviewed papers and navigating the writing process for such publications.

This qualitative descriptive study aimed to explore the experiences of PWLE/F and researchers with the writing process for engagement in mental health and substance use research. Separate from participants, PWLE/F were engaged in all phases of the study as partners during the research process. Interviews were conducted with 13 PWLE/F and 12 researchers across Canada via Zoom. Interviews were analyzed using reflexive thematic analysis.

Three themes captured the experiences of PWLE/F: navigating uncharted territories, the disclosure dilemma, and paving the way for meaningful co-authorship. Four themes represented the experiences of researchers: prioritizing informed co-authorship, frustrations with reporting on engagement, navigating how and when to report on engagement, and finding clarity amidst ambiguity.

This study sheds light on the complex experiences of PWLE/F and researchers with the writing process for engagement-focused papers. Overall findings indicate a need for clear guidance for both researchers and PWLE/F involved in mental health and substance use research projects, particularly around what to report on and how to meaningfully collaborate in peer-reviewed papers.

The online version contains supplementary material available at 10.1186/s40900-025-00802-3.

Engaging people with lived experience and families as partners in mental health and substance use research can make the research more relevant and better aligned with community needs (this is referred to as ‘lived experience engagement’, or just ‘engagement’). One way to understand engagement better is by describing it clearly in journal articles. Yet, little is known about how people with lived experience/families and researchers actually experience that writing process. We interviewed 25 people across Canada (13 people with lived experience/families and 12 researchers) to better understand their experiences with the writing process in mental health and substance use research. In our interviews, people with lived experience/families often felt unsure about how they could add to academic papers and faced power imbalances in research settings, such as when researchers used jargon that limited participation. They also talked about what we call the ‘disclosure dilemma’, where they debated the benefits of disclosing their lived experience on papers with the risks of disclosing it due to stigma. On the other hand, researchers valued informed co-authorship with people with lived experience/families, but found it hard to describe engagement in their papers within strict word limits and little tailored guidance to their field. Overall, our study sheds light on a need for clear guidance around the writing and co-authorship process that is specific to mental health and substance use research.

The online version contains supplementary material available at 10.1186/s40900-025-00802-3.