Discussing the gaps in the science and practice of lived experience engagement in mental health and substance use research: results of knowledge mobilization activities
Abstract Background Engaging people with lived experience of mental health or substance use challenges and family members (PWLE) improves the quality and relevance of the associated research, but it can be challenging to include them meaningfully and authentically in the work. Knowledge mobilization...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2024-02-01
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| Series: | Research Involvement and Engagement |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s40900-024-00554-6 |
| _version_ | 1827325806256324608 |
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| author | Lisa D. Hawke Faith Rockburne Melissa Hiebert Connie Putterman Natasha Y. Sheikhan |
| author_facet | Lisa D. Hawke Faith Rockburne Melissa Hiebert Connie Putterman Natasha Y. Sheikhan |
| author_sort | Lisa D. Hawke |
| collection | DOAJ |
| description | Abstract Background Engaging people with lived experience of mental health or substance use challenges and family members (PWLE) improves the quality and relevance of the associated research, but it can be challenging to include them meaningfully and authentically in the work. Knowledge mobilization events After reviewing the literature on the science of lived experience engagement, we held two knowledge mobilization events to translate the findings to relevant partners and collect their feedback to guide our future research. A total of 55 people attended, bringing the perspective of people with lived experience, family members, research staff, research trainees, and scientists, as well as attendees holding multiple roles. We presented the scoping review findings, then held discussions to solicit feedback and encourage the sharing of perspectives. Attendee perspectives Through small and large group discussion activities, we found that our scoping review findings resonated with the attendees’ personal experiences with engagement in mental health and substance use research. Among the gaps highlighted in the discussions, the two that were most emphasized were the critical importance of improving diversity in engagement work in mental health and substance use, and the importance of addressing gaps around communication, relationships, rapport, and power dynamics in engagement spaces. Conclusions Diversity, communication, relationships, and power dynamics emerge as key areas of work needed in the near future to advance the science of PWLE engagement in mental health and substance use research. We commit to pursuing the work that is considered of greatest need by a range of partners this research engagement sphere. We call on researchers in this area to continue this line of work, with a focus on the areas of research identified by attendees. |
| first_indexed | 2024-03-07T14:35:01Z |
| format | Article |
| id | doaj.art-2dfa038b221d4ae78cad5ece843163a4 |
| institution | Directory Open Access Journal |
| issn | 2056-7529 |
| language | English |
| last_indexed | 2024-03-07T14:35:01Z |
| publishDate | 2024-02-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj.art-2dfa038b221d4ae78cad5ece843163a42024-03-05T20:41:08ZengBMCResearch Involvement and Engagement2056-75292024-02-011011410.1186/s40900-024-00554-6Discussing the gaps in the science and practice of lived experience engagement in mental health and substance use research: results of knowledge mobilization activitiesLisa D. Hawke0Faith Rockburne1Melissa Hiebert2Connie Putterman3Natasha Y. Sheikhan4Centre for Addiction and Mental HealthCentre for Addiction and Mental HealthCentre for Addiction and Mental HealthCentre for Addiction and Mental HealthCentre for Addiction and Mental HealthAbstract Background Engaging people with lived experience of mental health or substance use challenges and family members (PWLE) improves the quality and relevance of the associated research, but it can be challenging to include them meaningfully and authentically in the work. Knowledge mobilization events After reviewing the literature on the science of lived experience engagement, we held two knowledge mobilization events to translate the findings to relevant partners and collect their feedback to guide our future research. A total of 55 people attended, bringing the perspective of people with lived experience, family members, research staff, research trainees, and scientists, as well as attendees holding multiple roles. We presented the scoping review findings, then held discussions to solicit feedback and encourage the sharing of perspectives. Attendee perspectives Through small and large group discussion activities, we found that our scoping review findings resonated with the attendees’ personal experiences with engagement in mental health and substance use research. Among the gaps highlighted in the discussions, the two that were most emphasized were the critical importance of improving diversity in engagement work in mental health and substance use, and the importance of addressing gaps around communication, relationships, rapport, and power dynamics in engagement spaces. Conclusions Diversity, communication, relationships, and power dynamics emerge as key areas of work needed in the near future to advance the science of PWLE engagement in mental health and substance use research. We commit to pursuing the work that is considered of greatest need by a range of partners this research engagement sphere. We call on researchers in this area to continue this line of work, with a focus on the areas of research identified by attendees.https://doi.org/10.1186/s40900-024-00554-6Lived experiencePatient-oriented researchResearch methods |
| spellingShingle | Lisa D. Hawke Faith Rockburne Melissa Hiebert Connie Putterman Natasha Y. Sheikhan Discussing the gaps in the science and practice of lived experience engagement in mental health and substance use research: results of knowledge mobilization activities Research Involvement and Engagement Lived experience Patient-oriented research Research methods |
| title | Discussing the gaps in the science and practice of lived experience engagement in mental health and substance use research: results of knowledge mobilization activities |
| title_full | Discussing the gaps in the science and practice of lived experience engagement in mental health and substance use research: results of knowledge mobilization activities |
| title_fullStr | Discussing the gaps in the science and practice of lived experience engagement in mental health and substance use research: results of knowledge mobilization activities |
| title_full_unstemmed | Discussing the gaps in the science and practice of lived experience engagement in mental health and substance use research: results of knowledge mobilization activities |
| title_short | Discussing the gaps in the science and practice of lived experience engagement in mental health and substance use research: results of knowledge mobilization activities |
| title_sort | discussing the gaps in the science and practice of lived experience engagement in mental health and substance use research results of knowledge mobilization activities |
| topic | Lived experience Patient-oriented research Research methods |
| url | https://doi.org/10.1186/s40900-024-00554-6 |
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