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

Abstract

Background The importance and value of involvement of people with lived experience of suicide has been recognized in suicide research and prevention. Nonetheless, clear guidance on research collaboration and co-production is lacking. This study aimed to address this gap by developing a set of guidelines on active involvement of people with lived experience of suicide in suicide studies., i.e., conducting research with or by people with lived experience, rather than to, about or for them. Methods The Delphi method was used to determine statements on best practice for the active involvement of people with lived experience of suicide in suicide research. Statements were compiled through a systematic search of the scientific and grey literature, and reviewing qualitative data from a recent related study conducted by the authors. Two expert panels: people with lived experience of suicide (n = 44) and suicide researchers (n = 29) rated statements over three rounds of an online survey. Statements endorsed by at least 80% of panellists of each panel were included in the guidelines. Results Panellists endorsed 96 out of 126 statements in 17 sections covering the full research cycle from deciding on the research question and securing funding, to conducting research and disseminating and implementing outcomes. Overall, there was a substantial level of agreement between the two panels regarding support from research institutions, collaboration and co-production, communication and shared decision making, conducting research, self-care, acknowledgment, and dissemination and implementation. However, panels also disagreed on specific statements regarding representativeness and diversity, managing expectations, time and budgeting, training, and self-disclosure. Conclusions This study identified consensus recommendations on active involvement of people with lived experience of suicide in suicide research, including co-production. Support from research institutions and funders, and training on co-production for researchers and people with lived experience, are needed for successful implementation and uptake of the guidelines.

Involving Young People With Lived and Living Experience of Suicide in Suicide Research

“…The guidelines developed in the current study address this gap by suggesting actions that young people themselves can take. They reflect those in recently published guidelines for involving adults in suicide research, which included actions that people with lived experience can take to enable self-care and autonomy in their involvement (Krysinska et al, 2023).…”

Understanding the needs and perspectives of young adults with recent suicidal ideation: insights for suicide prevention

“…However, current research is limited in reporting engagement of individuals with lived experience of suicidal ideation/behavior in suicide prevention efforts (23). Recently, Krysinka et al (2023) published recommendations on the active involvement of individuals with lived experience of suicide in suicide research, advocating for co-production (24). Despite the importance of involving young adults with lived experience in suicide prevention being increasingly recognized, there is still a significant scientific gap, with very few studies worldwide in this area (23).…”

Datasheet2.pdf

“…However, current research is limited in reporting engagement of individuals with lived experience of suicidal ideation/behavior in suicide prevention efforts (23). Recently, Krysinka et al (2023) published recommendations on the active involvement of individuals with lived experience of suicide in suicide research, advocating for co-production (24). Despite the importance of involving young adults with lived experience in suicide prevention being increasingly recognized, there is still a significant scientific gap, with very few studies worldwide in this area (23).…”