Researchers create guidelines supporting young people with a lived and living experience of suicide to contribute to suicide research

Involving young people with lived and living experience of suicide in suicide research

by Marianne Webb, Charlie Cooper, Laura Hemming, Alex Dalton, Emily Unity, Magenta B. Simmons, Sarah Bendall and Jo Robinson

Published 14 February 2024

What's the issue?

Suicide is the fourth leading cause of death of young people aged 15–29 years worldwide (World Health Organization, 2021) and the leading cause of death in young Australians (Australian Bureau of Statistics, 2022).

The involvement of young people in suicide prevention research is important to improve our understanding of young people's experiences of suicidal thoughts and behaviours to help inform tailored prevention approaches. However, given the additional ethical and risk management consideration, this involvement needs to be conducted in a safe and respectful manner.

Currently, there is limited research available to provide guidance for involving young people with a lived and living experience of suicide in research. The authors of this paper aimed to create a set of guidelines to support this type of research.

What was done?

Researchers conducted a peer-reviewed and grey literature search, plus a three-phase Delphi expert consensus study to inform the development of the guidelines. The researchers agreed on search terms and developed an eligibility criterion. Using this, the literature search identified 27 peer-reviewed articles and 10 grey literature studies that were eligible for inclusion.

For the first part of the Delphi study, semi-structured stakeholder interviews were conducted with:

• 13 young people aged 15-30 years who had previously participated in a study relevant to suicide and self-harm and had lived and living experience of suicide (with no suicidal thoughts in the past week)

• 14 researchers who had published peer-reviewed papers in the area of youth suicide and/or self-harm in youth or had involved young people with lived or living experience of suicide and/or self-harm in research activities.

Interviews were conducted via Zoom, were audio-recorded, and transcribed by a transcription service.

The second part of the Delphi component comprised of two rounds of surveys where two expert panels consisting of 27 young people with lived and living experience (panel 1), and 28 researchers (panel 2) were given a series of statements to rate on an agreed scale.

What was found?

The two panels of researchers and youth with lived and living experience of suicide agreed on most statements however there were some notable differences.

The research found the majority of young people wanted clinicians to be involved and have an active role in supporting them, however researchers felt they had a general lack of resources to do so, or limited access to include clinicians as part of the research team.

Consensus was also not reached relating to the involvement of young people with active suicidal thoughts and behaviours. Further research as to how to safely involve these young people in research could be considered.

At the completion of the Delphi study, all included items were collated into a final set of guidelines.

The guidelines include information for both researchers and young people with lived and living experience on:

• Preparing for the involvement of young people in suicide research
• Best practices to support safety and wellbeing of young people
• Evaluation methods for the involvement of young people in the research.

Additionally, the guidelines provide information for young people about:

• How to safely communicate about their lived experience of suicide
• Ways to manage and prevent distress
• The importance of support networks.

Why are findings important?

There is a great benefit to include young people with lived and living experience in suicide prevention research to help us better understand their experiences and identify the best prevention practices and supports. Guidelines about how to do this effectively, ensure the voices and valuable contribution of young people contribute to suicide prevention in Australia.