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

BMC Psychiatry volume 23, Article number: 496 (2023) Cite this article

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.

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Background

The active involvement of people who have a personal experience of using health, mental health and/or social care services and/or caring for someone who uses such services (i.e., “consumers”, “experts-by-experience” or “people with lived experience”) in service and policy development has been relatively well established [1,2,3]. More recently, there has been growing emphasis on conducting research with or by consumers, instead of to, about or for consumers [4]. This represents a paradigmatic shift from an assumption that professional experts, such as researchers and other specialists, are best placed to decide on the subject and the type of research that should be undertaken [5]. Despite the increasing popularity of the concept, there is lack of consensus regarding the terminology associated with consumer involvement and participation in research, and different terms have been used internationally, including “patient and public involvement”, “service user involvement”, “patient participation”, “collaboration”, “partnership”, and “co-production” [6, 7].

Informed by the original “ladder of citizen participation” concept [8], different models [9], frameworks [10, 11], and tools [12,13,14], describe the type of active involvement of consumers in health research. One of these is co-production encompassing co-planning, co-design, co-delivery, and co-evaluation [7]. In co-production, “consumers [are] involved in, or leading, defining the problem, designing and delivering the solution, and evaluating the outcome, either with professionals or independently” [7; p, 2).

Consumer involvement can have a positive impact on both the research process [15] and consumers, researchers and communities [16]. The positive impacts include enhanced quality and appropriateness of research questions and recruitment strategies, more consumer-focused interpretation of research data and better dissemination and implementation [15, 17, 18]. Consumers can gain confidence and additional life skills, feel more empowered and valued, while researchers can achieve new insights and a greater understanding of their research area and value the views of those who ‘live’ the topic being investigated [16, 17, 19].

On the community level, consumer involvement contributes to a deeper understanding of mental health conditions for researchers and improved knowledge of research for consumers [16]. Despite these advantages, consumer involvement in research is not free from challenges and pitfalls, such as tokenistic involvement, power struggles, and compromised scientific quality [18, 19]. These issues can be minimized by provision of appropriate training to consumers and researchers, careful planning, and by ensuring adequate funding [15].

The importance of active involvement of people with lived experience of suicide, which is a phrase used interchangeably to refer to “consumers” or ”experts by experience”, has been increasingly acknowledged in the field of suicide research and prevention. A lived experience of suicide is defined as “having experienced suicidal thoughts, survived a suicide attempt, cared for someone through suicidal crisis, or been bereaved by suicide” [20]. According to O’Connor and Portzky [21], “recognition of the importance of postvention and those with lived experience (…) is a positive development in the field in recent decades” and a “key to suicide research and prevention activities” (p. 4). Studies on the process and outcomes of consumer involvement in suicide research have been emerging [22,23,24,25,26,27,28,29].

To-date the literature has been focused on involvement of consumers or people with lived experience in research [13, 15, 16]. As suicide is understood as a multifactorial event and behavior [30], it is not clear whether health-related research guidelines and frameworks of “consumer involvement”, including co-production, can effectively guide active involvement of people with lived experience of suicide in suicide research. The Voice of people with Lived Experience of suicide (VocLE) study aimed to address this lack of clear guidance by developing a set of guidelines on active involvement (i.e., research with or by people with lived experience, rather than to, about or for them) in suicide research. The VocLE study was a 2-year mixed methods study conducted in Australia including a qualitative interview study and a quantitative expert consensus study. The guidelines have been developed using the Delphi expert consensus method, which is used to gather practice-based evidence where it is not feasible to determine best-practice through experimental research [31]. This method has been successfully used to develop guidelines on consumer involvement in medical and social research [13, 32, 33]. Our paper reports on the process of developing guidelines on active involvement of people with lived experience of suicide in suicide research and presents the resulting set of statements.

Methods

The Delphi method

We used the Delphi consensus method, as applied to mental research [31] to determine statements on best practice for the active involvement of people with lived experience of suicide in suicide research. The Delphi consensus method is effective for establishing an evidence-base in the absence of literature on the topic. The Delphi method involves three stages: (a) sourcing statements, (b) development of the Delphi survey, and (c) the formation of an expert panel who complete the survey over three rounds [31].

1. Sourcing statements

We conducted a systematic search of the scientific and grey literature to source statements about active involvement of people with lived experience of suicide in suicide research. Researchers KKr and KA searched Medline and PsycINFO databases. Medline was searched with a combination of MeSH (Medical Subject Headings) and text words: (suicide research.mp (multi-purpose). OR Suicide/ OR Suicide.mp. OR mental health research.mp. OR psychiatric research.mp. OR disability research.mp.) AND (consumer participation.mp. OR user participation.mp. OR carer participation.mp. OR patient participation.mp. OR Patient Participation/ OR consumer involvement.mp. OR user involvement.mp. OR carer involvement.mp. OR patient involvement.mp. OR lived experience.mp.) AND (guide*.mp. OR Practice Guideline/ OR Guideline/). The same search string was used in PsycINFO. The search was limited to English language publications, and research published within the past 10 years (from 2012 to the time of the search in May 2021).

Using similar combinations of the search terms used to search the scientific databases, researcher KKr searched the grey literature using Google search engines of English-speaking countries (Google.com, Google.com.au, Google.co.uk, Google.nz, Google.ca). Google was searched by combining search words (i.e., a total of 24 combinations) from each of the three groups: (a) “suicide research”, “mental health research”, “disability research”, (b) “consumer participation”, “user participation”, “carer participation”, “consumer coproduction”, “user coproduction”, “carer coproduction”, “service users”, “lived experience”, and (c) “guide*”. We used Google Chrome in incognito mode to avoid potential bias from the search history. Researcher KKr screened the first 20 results of each search for relevant content. Of the total results screened, 14 resources were determined to be relevant (Appendix 1).

In addition, researchers AR, IO, KKr, KKo, MMG, and VR read the deidentified transcripts and extracted the relevant statements on active involvement of people with lived experience of suicide in suicide research from a total of 36 individual interviews with people with lived experience of suicide (n = 19) and suicide researchers (n = 17). The qualitative interviews were conducted in the context of the mixed-methods VocLE study to obtain the views of people with lived experience of suicide and suicide researchers on involvement of lived experience in suicide research. The findings will be published elsewhere.

2. Development of the Delphi survey

Statements, based on the literature and the interviews, were compiled into a Delphi survey. Four researchers (AR, KA, KKr), including a lived experience researcher (IO), examined the statements to ensure each contained a separate idea and was within the scope of the study. Where necessary, statements were rephrased to improve clarity, ensuring each statement about how people with lived experience of suicide can be involved in suicide research was clearly described.

Following this, other team members (JH, KKo, VR), including three lived experience researchers (BE, MB, MMG), reviewed and approved the statements for inclusion in the survey. The statements (N = 114) were grouped into 17 sections: (1) Research Institutions; (2) Collaboration and Co-production; (3) Developing Collaborative Networks; (4) Representativeness and Diversity; (5) Managing Expectations; (6) Time, Budgeting and Other Resources; (7) Training; (8) Language; (9) Communication and Shared Decision Making; (10) Sharing Power; 11) Deciding on the Research Question; 12) Conducting Research; 13) Support and Self-care; 14) Self-disclosure, Multiple Roles and Conflict of Interest; 15) Acknowledgement; 16) Monitoring and Evaluation; and 17) Dissemination and Implementation.

As the VocLE study was funded to be conducted in Australia, the key terms “lived experience of suicide”, “lived experience researcher”, “academic researcher”, and “co-production” were defined in the introduction to the online survey based on current practice in suicide prevention and research in Australia and the literature (Table 1).

Table 1 Definitions of key terms used in the Delphi expert consensus study
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3. Formation of the Delphi expert panel

Two Delphi expert panels were formed: (a) people with lived experience of suicide who had experience of, or a particular interest in, conducting or participating in suicide research and (b) people who undertook suicide prevention research as part of their professional role (suicide researchers). People with lived experience of suicide could participate if they: (a) were aged 18 and over, (b) had lived experience of suicide (i.e., survived a suicide attempt more than 6 months prior to participating in this study, were bereaved by suicide more than 6 months prior to participating in this study, had experienced suicidal thoughts, and/or had been caring for someone through a suicidal crisis), (c) have ever participated as a co-researcher, an advisor, a participant in a research project in regards to suicide/prevention, and/or (d) had an interest in participating in suicide research studies in the future. Suicide researchers could participate if they have been actively involved in suicide-related research in Australia [34].

We recruited people with lived experience of suicide through various sources. ACACIA: The ACT Consumer & Carer Mental Health Research Unit at the Lived Experience Research Unit (Australian National University), the Australian Institute for Suicide Research and Prevention (AISRAP, Griffith University), and Roses in the Ocean, disseminated the study announcement to their members. People with lived experience of suicide who had taken part in the qualitative interviews and had consented to be informed about the Delphi study also received the study announcement. In addition, we posted the study announcement on social media (Facebook, Twitter, LinkedIn).

Suicide researchers were recruited through the Suicide Prevention Researcher Network at the Centre for Mental Health at the University of Melbourne (“LIFEWAYS Project: Leading research into suicide prevention”; previously known as the National Leadership in Suicide Prevention Research Project), a register held by the Australian National University Lived Experience Research Unit, the researcher network at AISRAP, and study announcements posted on social media (Facebook, Twitter, LinkedIn). Suicide researchers who had taken part in the qualitative interviews and had consented to be informed about the Delphi study also received the study announcement.

Data regarding professional research discipline or setting were not collected. All panellists provided online informed consent before participating in the study and were offered a $AUD15 gift voucher to reimburse them for their time for completing each round of the online survey.

4. Delphi consensus survey rounds

Data collection occurred between November 24, 2021, and March 27, 2022. The Round One survey included sociodemographic questions and 114 statements to be rated by the expert panellists. The survey was completed via Qualtrics, a secure online platform for survey hosting. To complete the survey, expert panellists rated each statement as “essential”, “important”, “don’t know/depends”, “unimportant” or “should not be included” in the guidelines. In Round One, free text boxes were also included at the end of each section of the survey to allow panellists to provide comments about the statements or suggest additional statements. These comments were read and screened for any ideas that had not already been incorporated into the survey. Ideas that were determined to be original were developed into new statements (n = 12) and were introduced in the Round Two survey. Statements that met the criteria to be re-rated in the Round One survey (that is, were rated by 70–79.9% of both expert panels as “important” or “essential” or rated by 80% or more of one expert panel as “important” or “essential”) were also included in the Round Two survey. Statements that were newly added in Round Two based on panellist feedback and met the criteria to be re-rated comprised the Round Three survey.

Data analysis

Data were analyzed in Microsoft Excel. Demographic characteristics of the two panel groups were summarized using descriptive statistics. The decision to have the two panels was based on the number of panellists recruited for the study being high enough to ensure stability in ratings (i.e., one panellist would not have too much influence on the outcome of an item in the separate panel groups). A benefit of having two stable panel groups is that any differences in responses can be contrasted and compared, allowing a better understanding of each expert group, rather than this being lost in the ratings if they are pooled from one big panel [31].

Endorsement ratings were calculated for each panel by adding the percentage of panellists rating the statement as “important” or “essential” which determined the outcome of each statement. Statements that were rated by 80% or more of panellists as “essential” or “important” across both panels were endorsed as actions to be taken to involve people with lived experience of suicide in suicide resarch. Statements that were rated by 70–79.9% of panellists in both panels, or by 80% or more of panellists in one panel only, as “essential” or “important” were re-rated in the following survey round. Statements that were rated by less than 70% of panellists in both panels, or 70.0–79.9% of panellists in one panel only, as “essential” or “important” were excluded. When re-rated in the following round(s), statements that again met the criteria to be re-rated (as described above) were considered to not have achieved consensus regarding inclusion or exclusion of the statement within two rounds and were excluded. Trends in ratings between the two panels were analysed more broadly across survey sections and in relation to more specific topics by comparing and contrasting endorsement rates.

Ethics approval

This study received Human Research Ethics Committee approval from The University of Melbourne (HREC# 22453).

Results

Expert panels

The study included two panels: a lived experience panel and a researcher panel. The expert panels comprised a total of 73 panellists, including 44 people with a lived experience of suicide and 29 suicide researchers, 14 (48.3%) of whom also self-identified as having lived experience of suicide. Panellists’ characteristics are described in Table 2.

Table 2 Panellists’ characteristics (N = 73)
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The overall panellist retention rate was high, with over 80% of panellists who completed Round One also completing Round Two and Round Three. Panellist retention was stronger amongst researcher panellists as 100% of suicide researchers who completed the Round One survey also completed the Round Two and Round Three surveys (Table 3).

Table 3 Participation of Delphi panellists in each survey round
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Delphi consensus surveys

Figure 1 presents a flow chart of statements ratings across the three Delphi rounds. A total of 126 statements were rated across the three survey rounds, resulting in 96 statements (76.2%) endorsed as important or essential for actively involving people with lived experience in suicide research, and 30 statements (23.8%) being rejected. Table 4 presents statements included in the guidelines. The endorsement ratings for each statement across the survey rounds are provided in Appendix 2.

Fig. 1
figure 1

Overview of statements throughout the three survey rounds

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Table 4 Included statements (n = 96) endorsed by both Delphi expert panels
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In general, there was a substantial level of agreement between the two panels with a correlation of 0.63 in ratings in Round One. Table 5 summarizes the number of statements that were rated and endorsed in each survey section. Both panels in Round One of rating endorsed 78 statements (68.4%) and rejected seven statements (6.1%). Two statements were unanimously endorsed by the two panels: “lived experience researchers should receive information and support regarding research ethics, privacy and confidentiality” (section on Training) “academic researchers should present research data using understandable terms” (section on Language).

Table 5 Number of statements rated and endorsed by both panels across the three survey rounds
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Eight statements were rejected by both panels in the online survey (Table 6). These included two statements in the section on Representativeness and Diversity, and one statement each in sections on practical ways Research Institutions can support engagement of lived experience researchers, Collaboration and Co-production, Developing Collaborative Networks, Conduct of Research, Communication and Shared Decision, and Sharing of Power.

Table 6 Excluded statements (n = 8) rejected by both Delphi expert panels
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There were consistent discrepancies between the lived experience and researcher panels throughout the Delphi process, resulting in rejection of 15 statements (11.9%). Throughout the process, the lived experience panel consistently endorsed (> 80%) and the researcher panel consistently rejected (< 80%) 14 statements (Table 7). These included three statements in the section on Training, two statements in the section on practical ways Research Institutions can support engagement of lived experience researchers, and two statements in the section on Representativeness and Diversity. The other seven statements were in sections on 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 (one statement in each section). Throughout the process, the researcher panel consistently endorsed (> 80%) and the lived experience panel consistently rejected (< 80%) a statement in the section on Support and Self-Care, which stipulated that lived experience researchers should be ready or in recovery to engage in the research process. There were no consistent discrepancies between the two panels regarding statements in the sections on Language, Communication and Shared Decision Making, Conducting Research, Monitoring and Evaluation, and Dissemination and Implementation.

Table 7 Excluded statements (n = 15) with differences in ratings between the two Delphi expert panels
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Discussion

Our study aimed to determine, using the Delphi method of expert consensus, how to actively involve people with lived experience of suicide in suicide research. Of importance, our aim was to develop guidelines to support existing guidance regarding involvement of people with lived experience in health research more generally [4], including co-production [7]. These guidelines may be less applicable to other disciplines of suicide research which have a more robust tradition of qualitative methods studying lived experience, such as sociology, anthropology, or community psychology. These disciplines already have substantial methodological norms (e.g., “community-engaged research”) [40] and an established practice of leveraging and disclosing one’s own positionality in research and published material [41].

The lived experience and researcher panellists endorsed a total of 96 out of 126 statements (76%) across 17 domains, which were sourced from interview data and scientific and grey literature on consumer involvement in health research. As such, our results reflect a general agreement with recommendations on co-production and with the overarching principles and values of engagement and participation that support partnerships between researchers and people with lived experience of suicide [17].

The study panellists endorsed statements in the 17 proposed domains (sections), which span across the full research cycle: from deciding on the research question and securing funding, to conducting research and disseminating and implementing outcomes [4, 42]. From the co-production perspective, this implies development of lived experience leadership and capacity, involvement of people with lived experience in defining the problem, designing and delivering the solution, and evaluating the outcomes in suicide research [7]. In general, there was a strong consensus between the two study panels. In the Round One of rating, both panels agreed in their endorsement of 78 statements (68.4%) and rejection of seven statements (6.1%). This reflects agreement between people with lived experience of suicide and suicide researchers regarding specific “how to” recommendations regarding co-production and the broader co-production values reflected in the statements. Previous studies have also shown a high degree of agreement between views of people with lived experience of suicide and suicide researchers regarding research priorities [43, 44] and ethical issues in suicide prevention studies [45].

Two statements were endorsed unequivocally by the two panels. These were statements stipulating that lived experience researchers receive information and support on research ethics, privacy, and confidentiality, and a recommendation for academic researchers to present research data in understandable terms. The former statement is similar to a finding that attendance of appropriate research training is one of the key ethical issues in suicide prevention studies, a result of another Delphi expert consensus study involving suicide researchers and people with lived experience [45]. It can thus be recommended that people with lived experience who are actively involved in suicide research should be routinely provided with training on research ethics. The latter statement reflects a call for using “lay friendly language” [26; p. 623] when working with people with lived experience of suicide who are not familiar with research jargon.

Eight of 126 statements (6.3%) were rejected by both panels. These included statements in seven sections, including practical ways Research Institutions can support engagement of lived experience researchers, Representativeness and Diversity of Lived Experience, Collaboration and Co-production, Development of Collaborative Networks, Conduct of Research, Communication and Shared Decision, and Sharing of Power. This result may seem surprising as statements with a comparable content (e.g., engagement of an independent facilitator, people with lived experience piloting research measures and processes) are included in other guidance related to health research [13, 46]. It is possible that members of both panels already had experience of collaboration and found these recommendations unfeasible or burdensome. Further, unequivocal rejection of some of the proposed statements supports the original study rationale regarding the need for specific guidelines to support lived experience suicide research, as broader health-related research guidelines and frameworks are not automatically applicable to suicide research.

There were consistent discrepancies between the lived experience and researcher panels throughout the Delphi process, resulting in rejection of 15 statements (11.9%). The lived experience panel consistently endorsed and the researcher panel consistently rejected 14 statements across 11 domains. These included recommendations for researchers to contact their research organization or university to see if they have any funding for lived experience researcher(s) involvement, prior to the grant application being successful, involving more than one lived experience researcher in a research project, and ensuring that findings are available to public contributors, e.g., via open access journals. Differences between the two panels in our study may reflect an aspirational view of collaboration held by people with lived experience, which researchers more familiar with the reality of the academia find impractical or unfeasible given limited resources available, including budget for open access publications [47, 48]. Alternatively, these discrepancies may indicate the different needs and expectations of people with lived experience and suicide researchers, which may resurface and will need to be addressed in the process of research collaboration [49, 50].

Lived experience panellists endorsed two statements on training around language, which were rejected by research panellists. These statements recommended training in the language and terminology used in research for lived experience researchers and training in lay-friendly research language for academic researchers. It is possible that academic researchers do not experience language barriers in their communication with lived experience colleagues around research projects and/or believe that the established terminology used in their research domain is necessary to ensure precision and secure ongoing funding for research activities [51]. Another training-related statement rejected by academic researchers stipulated that they should seek insight into the lived experience of mental health issues outside the academic context. It is possible that expectations related to this statement exceed the boundaries of the established research and academic activities. Alternatively, the researcher panellists may believe that they have sufficient insight into the lived experience of suicide and additional exposure is not needed. Additionally, three of the statements rejected by research panellists related to aligning their research priorities and methods with lived experience researchers and organizations (sections on representativeness and diversity, managing expectations, and deciding on the research questions). Again, it is possible that there is a gap in the perception of this subject between academic and lived experience researchers: the former may believe that their activities meet the local and more general lived experience needs and expectations, while the latter still have unmet needs. Further research is needed to better understand the differences in ratings between the researcher and lived experience panellists in the field of suicide research and prevention [52].

On the other hand, the researcher panel consistently endorsed, and the lived experience panel consistently rejected, a statement related to support and self-care, which recommended that lived experience researchers are ready or in recovery to engage in the research process. This result may reflect the differences in the perceived importance and understanding of the concept of recovery between people with lived experience and researchers [53]. Further, the process of recovery in the context of fluctuating suicidal ideation and behavior is only an emerging research topic and its understanding is limited [54,55,56,57]. It also remains unclear how recovery can be defined in relation to suicide bereavement [58] and the caregiving role [59], highlighting the need for future work on more clarity around the meaning of these concepts.

Strengths and limitations

Our study has a number of strengths. The study statements were derived from the literature and interview data. The study included two panels: a lived experience panel and a researcher panel, and the latter included researchers with lived experience of suicide. Panellists in both groups rated the proposed statements, and the voice of each panellist had equal weight in the endorsements. Further, both panels had an optimal number of panellists in all rounds (between 15 and 30 panellists) [31] with a very low attrition rate, especially in the researcher panel. This may indicate the importance of the topic and the panellists’ commitment to contribute to development of the guidelines and provide weight to the rationale and the findings of the study.

The findings must also be understood within the limitations of the study. The key concepts of the guidelines (“lived experience of suicide”, “co-production”) have been defined according to the literature and the current practice in suicide research and prevention in Australia and may be different from terminology used in other disciplines of suicide research or in other countries. The panellists self-identified as people with lived experience of suicide or suicide researchers, and we did not collect data on how long they were involved in research or the level of their experience in co-production. We did not collect data on details of the lived experience of suicide or on disciplines of suicide researchers. Given the networks used to recruit participants, it is most likely that the members of the research panel represented a wide range of professional backgrounds related to mental health and health, including psychology, psychiatry, mental health nursing, general practice, and social work. As such the guidelines may not reflect views of suicide researchers in other disciplines [60]. Further, it was beyond the scope of the study to review all methodological and epistemological approaches to co-production of knowledge. Future studies may also look at development of guidelines through the lens of knowledge production science.

Conclusions

The consensus recommendations identified in our study provide a much-needed guide for researchers and people with lived experience of suicide on research collaboration and co-production. It is anticipated that the guidelines will contribute to a broader uptake of the co-production approach in suicide research in Australia and internationally. Future implementation and evaluation studies can determine the usefulness of these guidelines in progressing suicide prevention research. We are aware that it will take time to make co-production an integral part of the research process and we advise against an “all-or-nothing” approach, which may stall suicide research. Successful implementation and uptake of the guidelines will be facilitated by ongoing education of research institutions and funders about the value and the process of co-production, as well as providing training on co-production to researchers and people with lived experience of suicide.

Data Availability

All data generated or analysed during this study are included in this published article and its supplementary information files.

References

  1. Cluley V, Ziemann A, Feeley C, Olander EK, Shamah S, Stavropoulou C. Mapping the role of patient and public involvement during the different stages of healthcare innovation: a scoping review. Health Expect. 2022;25(3):840–55.

    Article  PubMed  PubMed Central  Google Scholar 

  2. O’Shea A, Boaz AL, Chambers M. A hierarchy of power: the place of patient and public involvement in healthcare service development. Front Sociol. 2019;4:38.

    Article  PubMed  PubMed Central  Google Scholar 

  3. National Mental Health Commission. Sit beside me, not above me: supporting safe and effective engagement and participation of people with lived experience. Sydney: NMHC; 2019.

    Google Scholar 

  4. National Health and Medical Research Council and the Consumers Health Forum of Australia. The Statement on Consumer and Community involvement in Health and Medical Research. Canberra: NHMRC; 2016.

    Google Scholar 

  5. Boote J, Telford R, Cooper C. Consumer involvement in health research: a review and research agenda. Health Policy. 2002;61(2):213–36.

  6. Jørgensen K, Rendtorff JD. Patient participation in mental health care–perspectives of healthcare professionals: an integrative review. Scand J Caring Sci. 2018;32(2):490–501.

  7. Roper CA, Grey FL, Cadogan EM. Co-production: putting principles into practice in mental health contexts. Melbourne: University of Melbourne; 2018 Feb.

  8. Arnstein SR. A ladder of citizen participation. J Am Plann Assoc. 1969;35(4):216–24.

    Google Scholar 

  9. Daya I, Hamilton B, Roper C. Authentic engagement: a conceptual model for welcoming diverse and challenging consumer and survivor views in mental health research, policy, and practice. Int J Ment Health Nurs. 2020;29(2):299–311.

    Article  PubMed  Google Scholar 

  10. Jennings H, Slade M, Bates P, Munday E, Toney R. Best practice framework for patient and public involvement (PPI) in collaborative data analysis of qualitative mental health research: methodology development and refinement. BMC Psychiatry. 2018;18(1):1–11.

    Article  Google Scholar 

  11. Suomi A, Freeman B, Banfield M. Framework for the engagement of people with a lived experience in program implementation and research. Black Dog Institute; 2017.

  12. Staniszewska S, Brett J, Mockford C, Barber R. The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. Int J Technol Assess Health Care. 2011;27(4):391–99.

    Article  PubMed  Google Scholar 

  13. Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ. 2017;358:j3453. Aug 2;.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  14. Stocks SJ, Giles SJ, Cheraghi-Sohi S, Campbell SM. (2015). Application of a tool for the evaluation of public and patient involvement in research. BMJ Open. 2015;5(3):e006390.

  15. Brett JO, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17(5):637–50.

  16. Brett JO, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. A systematic review of the impact of patient and public involvement on service users, researchers and communities. PCORI. 2014;7(4):387–95.

  17. Gradinger F, Britten N, Wyatt K, Froggatt K, Gibson A, Jacoby A, et al. Values associated with public involvement in health and social care research: a narrative review. Health Expect. 2015;18(5):661–75.

    Article  PubMed  Google Scholar 

  18. Sangill C, Buus N, Hybholt L, Berring LL. Service user’s actual involvement in mental health research practices: a scoping review. Int J Ment Health Nurs. 2019;28(4):798–815.

    Article  PubMed  Google Scholar 

  19. Malterud K, Elvbakken KT. Patients participating as co-researchers in health research: a systematic review of outcomes and experiences. Scand J Public Health. 2020;48(6):617–28.

    Article  PubMed  Google Scholar 

  20. Roses in the Ocean. Lived experience of suicide [Internet]. Brisbane Qld: Roses in the Ocean; 2021 [cited 15 November 2021]. Available from: https://rosesintheocean.com.au/lived-experience-suicide.

  21. O’Connor RC, Portzky G. Looking to the future: a synthesis of new developments and challenges in suicide research and prevention. Front Psychol. 2018;9:2139.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Adeyemi I, Sanders C, Ong BN, Howells K, Quinlivan L, Gorman L, et al. Challenges and adaptations to public involvement with marginalised groups during the COVID-19 pandemic: commentary with illustrative case studies in the context of patient safety research. Res Involv Engagem. 2022;8(1):1–12.

    Article  Google Scholar 

  23. Dreier M, Baumgardt J, Bock T, Härter M, Liebherz S. Development of an online suicide prevention program involving people with lived experience: ideas and challenges. Res Involv Engagem. 2021;7(1):1–14.

    Article  Google Scholar 

  24. Littlewood DL, Quinlivan L, Steeg S, Bennett C, Bickley H, Rodway C, et al. Evaluating the impact of patient and carer involvement in suicide and self-harm research: a mixed‐methods, longitudinal study protocol. Health Expect. 2021;24:47–53.

    Article  PubMed  Google Scholar 

  25. MacLean S, MacKie C, Hatcher S. Involving people with lived experience in research on suicide prevention. CMAJ. 2018;190(Suppl):13–S14.

    Article  Google Scholar 

  26. Troya MI, Chew-Graham CA, Babatunde O, Bartlam B, Higginbottom A, Dikomitis L. Patient and public involvement and engagement in a doctoral research project exploring self‐harm in older adults. Health Expect. 2019;22(4):617–31.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Wadman R, Williams AJ, Brown K, Nielsen E. Supported and valued? A survey of early career researchers’ experiences and perceptions of youth and adult involvement in mental health, self-harm and suicide research. Res Involv Engagem. 2019;5(1):1–12.

    Article  Google Scholar 

  28. Watling D, Preece M, Hawgood J, Bloomfield S, Kõlves K. Developing an intervention for suicide prevention: a rapid review of lived experience involvement. Arch Suicide Res. 2020;18:1–16.

  29. Watling DP, Preece MH, Hawgood J, Bloomfield S, Kõlves K. Developing a post-discharge suicide prevention intervention for children and young people: a qualitative study of integrating the lived-experience of young people, their carers, and mental health clinicians. Child Adolesc Psychiatry Ment Health. 2022;16(1):1–15.

    Article  Google Scholar 

  30. Knipe D, Padmanathan P, Newton-Howes G, Chan LF, Kapur N. (2022). Suicide and self-harm. Lancet. 2022 May 14;399(10338):1903–1916.

  31. Jorm A. Using the Delphi expert consensus method in mental health research. Aust NZJ Psychiatry. 2015;49(10):887–97.

    Article  Google Scholar 

  32. Arblaster K, Mackenzie L, Matthews L, Willis K, Gill K, Hanlon P, et al. Learning from consumers: an eDelphi study of australian mental health consumers’ priorities for recovery-oriented curricula. Aust Occup Ther J. 2018;65(6):586–97.

    Article  PubMed  Google Scholar 

  33. Telford R, Boote JD, Cooper CL. What does it mean to involve consumers successfully in NHS research? A consensus study. Health Expect. 2004;7(3):209–20.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Reifels L, Ftanou M, Krysinska K, Machlin A, Robinson J, Pirkis J. Research priorities in suicide prevention: review of australian research from 2010–2017 highlights continued need for intervention research. Int J Environ Res Public Health. 2018;15(4):807.

  35. Griffiths K, Jorm AF, Christensen H. Academic consumer researchers: a bridge between consumers and researchers. Aust N Z J Psychiatry. 2004;38(4):191–6.

  36. Oxford Languages. Researcher [Internet]. Oxford: Oxford University Pres. ; 2021. [cited 15 November 2021]. Available from: https://languages.oup.com.

  37. Happell B, Gordon S, Bocking J, Ellis P, Roper C, Liggins J, et al. Turning the tables; power relations between consumer researchers and other mental health researchers. Issues Ment Health Nurs. 2018;39(8):633–40.

    Article  PubMed  Google Scholar 

  38. Meadows G, Farhall J, Fossey EM, Happell B, McDermott F, Rosenberg S, Edan V, Epstein M, Kennedy H, Roper C. Mental Health and Collaborative Community Practice: an australian perspective. Oxford University Press; 2020.

  39. Victorian Department of Health. Lived Experience workforce positions in Victorian public mental health services. 2017.

  40. Mikesell L, Bromley E, Khodyakov D. Ethical community-engaged research: a literature review. Am J Public Health. 2013;103(12):e7–14.

  41. Boursaw B, Oetzel JG, Dickson E, Thein TS, Sanchez-Youngman S, Peña J, Parker M, Magarati M, Littledeer L, Duran B, Wallerstein N. Scales of practices and outcomes for community‐engaged research. Am J Community Psychol. 2021;67(3–4):256–70.

  42. National Health and Medical Research Council. Resource Pack for Consumer and Community Participation in Health and Medical Research. Canberra: NHMRC; 2005.

    Google Scholar 

  43. Niner S, Pirkis J, Krysinska K, Robinson J, Dudley M, Schindeler E, et al. Research priorities in suicide prevention: a qualitative study of stakeholders’ views. AeJAMH. 2009;8(1):48–56.

    Google Scholar 

  44. Saini P, Clements C, Gardner KJ, Chopra J, Latham C, Kumar R, et al. Identifying suicide and self-harm research priorities in north west England: a Delphi study. Crisis. Jan; 2022;43(1):35–45.

    Article  PubMed  Google Scholar 

  45. Dempster G, Ozols I, Krysinska K, Reifels L, Schlichthorst M, Pirkis J, Andriessen K. Ethical issues to consider in designing suicide prevention studies: an expert consensus study. Arch Suicide Res 2022 Jan 10;1–17.

  46. The Codesign Initiative. Co-design: Shared perspectives on authentic co-design. 2016.

  47. Banfield M, Randall R, O’Brien M, Hope S, Gulliver A, Forbes O, et al. Lived experience researchers partnering with consumers and carers to improve mental health research: reflections from an australian initiative. Int J Ment Health Nurs. Aug; 2018;27(4):1219–29.

    Article  PubMed  Google Scholar 

  48. Ianniello M, Iacuzzi S, Fedele P, Brusati L. (2019). Obstacles and solutions on the ladder of citizen participation: a systematic review. Public Manag Rev.2019;21(1):21–46.

  49. Pearce T, Maple M, Shakeshaft A, Wayland S, McKay K. What is the co-creation of new knowledge? A content analysis and proposed definition for health interventions. Int Int J Environ Res Public Health. 2020;17(7):2229.

    Article  PubMed  Google Scholar 

  50. "Exploring patient and public. Involvement (PPI) and co-production approaches in mental health research: learning from the PARTNERS2 research programme. Res Involv Engagem. Sep 2020;21:6:56.

    Google Scholar 

  51. De Leo D, Goodfellow B, Silverman M, Berman A, Mann J, Arensman E, Hawton K, Phillips MR, Vijayakumar L, Andriessen K, Chavez-Hernandez AM. International study of definitions of English-language terms for suicidal behaviours: a survey exploring preferred terminology. BMJ Open. 2021;11(2):e043409.

  52. Hawgood J, Gibson M, McGrath M, Riley J, Mok K. Preliminary evaluation of lived experience of suicide training: short-, medium-and longer-term impacts of our voices in action training. Community Ment Health J 2021;24:1–2.

  53. Huisman A, van Bergen DD. Peer specialists in suicide prevention: possibilities and pitfalls. Psychol Serv. 2019;16(3):372–80.

    Article  PubMed  Google Scholar 

  54. Sellin L, Asp M, Wallsten T, Wiklund Gustin L. Reconnecting with oneself while struggling between life and death: the phenomenon of recovery as experienced by persons at risk of suicide. Int J Ment Health Nurs. 2017;26(2):200–7.

    Article  PubMed  Google Scholar 

  55. Sun FK, Lu CY, Tseng YS, Chiang CY. Factors predicting recovery from suicide in attempted suicide patients. J Clin Nurs. 2017;26(23–24):4404–12.

    Article  PubMed  Google Scholar 

  56. Sveticic J, De Leo D. The hypothesis of a continuum in suicidality: a discussion on its validity and practical implications. Mental Illn 2012; 4(2): e15.

  57. Chi MT, Long A, Jeang SR, Ku YC, Lu T, Sun FK. Healing and recovering after a suicide attempt: a grounded theory study. J Clin Nurs. 2014;23(11–12):1751–59.

    Article  PubMed  Google Scholar 

  58. Levi-Belz Y, Krysinska K, Andriessen K. Turning personal tragedy into triumph”: a systematic review and meta-analysis of studies on posttraumatic growth among suicide-loss survivors. Psychol Trauma. 2021;13(3):322–32.

    Article  PubMed  Google Scholar 

  59. Lavers G, Andriessen K, Krysinska K. A systematic review of the experiences and support needs of informal caregivers for people who have attempted suicide or experienced suicidal ideation. Int J Environ Res Public Health. 2022;19(9):5181.

    Article  PubMed  PubMed Central  Google Scholar 

  60. Abrutyn S, Mueller AS. Toward a robust science of suicide: epistemological, theoretical, and methodological considerations in advancing suicidology. Death Stud. 2021;45(7):522–7.

    Article  PubMed  Google Scholar 

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Acknowledgements

The authors gratefully acknowledge the contributions of all the expert panellists, without whom this research would not have been possible. We are grateful to ACACIA: The ACT Consumer & Carer Mental Health Research Unit at the Lived Experience Research Unit (Australian National University), the Australian Institute for Suicide Research and Prevention (Griffith University), Roses in the Ocean, and the Suicide Prevention Researcher Network at the Centre for Mental Health (LIFEWAYS Project: Leading Research into Suicide Prevention; previously known as the National Leadership in Suicide Prevention Research Project, University of Melbourne) for help with recruitment.

Funding

The VocLE Study is funded by Suicide Prevention Australia: Innovation Grant 2020–2022, National Suicide Prevention Research Fund. KKr, IO, and MB are supported by the Suicide Prevention Australia (Innovation Grant 2020–2022, National Suicide Prevention Research Fund). KA is supported by a National Health and Medical Research Council (NHMRC) Early Career Fellowship (1157796). JP is funded by a National Health and Medical Research Council Investigator Grant (GNT1173126).

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Authors and Affiliations

  1. Centre for Mental Health, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, VIC, Australia

    Karolina Krysinska, Anna Ross, Karl Andriessen, Martina McGrath & Jane Pirkis

  2. mentalhealth@work, Melbourne, VIC, Australia

    Ingrid Ozols

  3. Centre for Mental Health Research, Australian National University, Canberra, ACT, Australia

    Michelle Banfield

  4. Roses in the Ocean, Brisbane, QLD, Australia

    Bronwen Edwards

  5. The Australian Institute for Suicide Research and Prevention, School of Applied Psychology, Griffith University, Brisbane, QLD, Australia

    Jacinta Hawgood, Kairi Kõlves & Victoria Ross

Authors
  1. Karolina Krysinska
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  2. Ingrid Ozols
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  3. Anna Ross
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  4. Karl Andriessen
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  5. Michelle Banfield
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  6. Martina McGrath
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  7. Bronwen Edwards
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  8. Jacinta Hawgood
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  9. Kairi Kõlves
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  10. Victoria Ross
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  11. Jane Pirkis
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Contributions

KKr was the lead investigator. KKr, IO, MB, KA and JP co-designed the study. KKr and KA conducted the systematic literature searches and AR, IO, KKr, KKo, MMG, and VR conducted transcript screening. AR, IO, JH, KKr, KKo, MMG, KA, and VR drafted the survey items, BE, JH and MB contributed to the refinement of the survey items. BE, JH, KKo, KKr, MB, VR conducted recruitment. KKr conducted the Delphi survey rounds and AR analyzed the data. KKr drafted the manuscript, and all authors contributed to the revisions. All authors agreed with the final version and the submission of the manuscript.

Corresponding authors

Correspondence to Karolina Krysinska or Karl Andriessen.

Ethics declarations

Ethics approval and consent to participate

All methods were carried out in accordance with relevant guidelines and regulations. All experimental protocols were approved by a named institutional and/or licensing committee. Informed consent was obtained from all study participants. This study received Human Research Ethics Committee approval from The University of Melbourne (HREC# 22453).

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Not applicable.

Competing interests

The authors declare no competing interests.

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Krysinska, K., Ozols, I., Ross, A. et al. Active involvement of people with lived experience of suicide in suicide research: a Delphi consensus study. BMC Psychiatry 23, 496 (2023). https://doi.org/10.1186/s12888-023-04973-9

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BMC Psychiatry

ISSN: 1471-244X

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