Lived experience participation in suicide research
What's the issue?
Lived experience of suicide is important to inform and guide suicide prevention activities including research.
The inclusion of people with a lived experience of suicide in prevention activities and research was highlighted as a priority in the Australian National Suicide Prevention Adviser Final Advice. Despite outlining the inclusion of people with lived experience as a priority, there is limited research to understand the role and impact that these perspectives and voices can have in suicide prevention research.
In the existing literature, findings about the role and impact of lived experience involvement in suicide prevention research are limited. The current body of research primarily does not explore the effects of lived experience participation in suicide prevention studies, apart from acknowledging their inclusion as study participants during the research design phase. While a small body of research exists relating to the development of research frameworks for lived experience inclusion, there is limited research exploring specifically how lived experience representatives are included in research, or the supports and risk management strategies that were included in the research design.
The authors of this research review aimed to systematically map the evidence base to determine patterns in current practice of involving people with lived experience in suicide research in Australia.
What was done?
The authors performed a scoping review of the literature using an approach suggested by Arksey and O'Malley. The authors used a five-step method to undertake the scoping review. These steps included:
- Identifying the research question.
- Identifying relevant studies.
- Selecting studies for inclusion in the scoping review.
- Extracting and categorising data.
- Collating and summarising the results.
A research subcommittee was formed to support the researchers in direction and decision making where required.
The review included publications that related to the following areas:
- Definitions of lived experience inclusion
- Pathways in and out of participation in suicide prevention research
- Specific roles of people with lived experience, and
- Impacts from involvement and safety measures employed.
The scoping review was conducted on 11 June 2022 but was further updated on 3 March 2023 and 25 November 2023 due to delays in the review process. Grey literature was excluded from the study.
The review sought to understand lived experience participation in suicide prevention activities. Publications that explored experiences of non‐suicidal self‐injury were excluded from the review.
What was found?
The researchers found 42 papers eligible for inclusion in the scoping review. All papers were published between 2016 and 2023, with 22 papers published since 2022.
The review identified a changing landscape of research activities including people with lived experience of suicide with an increase in more recent years.
There was a large variability between the papers. The most common aim of the publications was the evaluation of a specific program. Mixed method papers were the most frequent in the scoping review.
The researchers found that key definitions of lived experience were inconsistent among the publications.
- Of the publications included in the scoping review, 12 of the 42 included a definition of lived experience, with the most common definition of lived experience stated by Suicide Prevention Australia or Roses in the Ocean (12 studies).
- Research recruitment for lived experience representatives was most commonly through an existing organisation or service (24 studies).
- Most papers (40) did not describe any specific protocols for lived experience participation in research.
- Almost half of the studies (20 studies) did not report any safety measures in place for participants.
- Six studies excluded people with lived experience for a recent suicide attempt, three studies for recent bereavement, and four studies for recent thoughts of suicide.
- Of the publications included in the scoping review:
- 20 studies include one or more safety measures for lived experience research participation.
- 37 referred to lived experience research participants as ‘research participants’.
- Only nine studies reported any impact of participation on people with lived experience.
- Four studies reported positive impacts for people with lived experience in the intervention outcomes, but not the research process.
- No publications reported any impacts on the researchers.
Why are the findings important?
This scoping review shows that existing research focuses predominately on research outcomes for those with lived experience due to the intervention, but not the outcomes for lived experience representatives from participation in the research study itself.
This review examined papers on lived experience research over time. The findings indicate that suicide prevention research is increasingly moving towards qualitative and mixed methods approaches, indicating a change in approach towards the importance of storytelling and narrative in lived experience research.
The key findings show an absence of specific research protocols to support research participants with a lived experience of suicide, and the absence of a universal definition for lived experience in research. Standardised research protocols and definitions can support lived experience representatives participating in suicide research, and researchers alike.
This scoping review highlights the inconsistent safety measures used in research with lived experience representatives. Research protocols and frameworks can protect the safety of both lived experience participants, and researchers.
The oldest paper included in the scoping review was published in 2016, demonstrating the recency of interest in this area, and limited publications to inform best practice when including lived experience representatives in research.