Support and guidance for the involvement of people with lived experience in suicide research

Active involvement of people with lived experience of suicide in suicide research: a Delphi consensus study

by Karolina Krysinska, Ingrid Ozols, Anna Ross, Karl Andriessen, Michelle Banfield, Martina McGrath, Bronwen Edwards, Jactina Hawgood, Kairi Kõlves, Victoria Ross and Jane Pirkis

Published 11 July 2023

What's the issue?

Involving people with lived and living experience of mental health concerns and suicide can positively impact research processes and research outcomes. The positive impacts include the development of quality research questions and recruitment strategies and support the sharing and interpretation of research outcomes by the individuals involved.

Involving people with lived and living experience of mental health concerns and suicide can be challenging to ensure genuine involvement and that it does not resemble tokenistic contributions. Active engagement is thought to deliver the best outcomes for both researchers and individuals with a lived and living experience of suicide involved in the research. However, limited guidance exists on how best to achieve active engagement.

In this study, researchers aimed to develop guidelines relating to the active involvement of people with a lived experience of suicide in research.

What was done?

Researchers selected a Delphi method to inform the development of guidelines for active engagement.

The Delphi method involves three stages: (a) sourcing statements, (b) development of the Delphi survey, and (c) the formation of an expert panel that completes the survey over three rounds.

To source statements about the active involvement of people with lived experience of suicide in suicide research, researchers conducted a systematic review of scientific and grey literature. These statements were then used to develop a survey.

The survey statements were then presented to two panels: people with lived experience of suicide (n = 44) and suicide researchers (n = 29). Statements were rated over three rounds. Statements that were accepted by at least 80% of panellists from each panel were included in the guidelines.

What was found?

In general, there was a substantial level of agreement between the two panels of researchers and those with lived experience on statements relating to support from research institutions, collaboration and co-production, communication and shared decision-making, conducting research, self-care, acknowledgment, and dissemination and implementation.

There was disagreement between the two panels relating to training, practical ways research institutions can support the engagement of lived experience researchers, and representativeness and diversity. Other statements that were not agreed upon included those about developing collaborative networks, managing expectations, time, budgeting and other resources, sharing power, deciding on the research question, self-disclosure, multiple roles and conflict of interest, and acknowledgement.

Why are findings important?

Guidelines provide a basis for researchers to work with people with lived and living experience of suicide that support active engagement. They may aid in encouraging researchers and improve the confidence of researchers to engage with those with a lived or living experience of suicide. Guidelines will also support those with a lived and living experience of suicide to feel understood and respected when involved in research development and implementation.