Suicide is a major public health problem, accounting for more than 800,000 deaths each year (World Health Organisation, 2018). Despite extensive investment into the development and evaluation of suicide prevention interventions, and an increase in intervention research (Robinson et al., 2018), suicide remains a leading cause of mortality and suicide rates have increased in some populations (Naghavi, 2019; Australian Bureau of Statistics, 2020). Thus, it can be argued that a new approach to suicide prevention is required.
The benefits of involving people with lived experience in the development of mental health interventions are well-documented (e.g. Faithful et al., 2019; Darnay et al., 2019). These include benefits related to increased relevance and acceptability of the intervention, leading to greater uptake, as well as benefits for those who contribute their lived experience including increased empowerment and the development of new skills and knowledge (Faithful et al., 2019; Darnay et al., 2019). As such, the importance of including people with lived experience in the development of suicide prevention interventions is increasingly recognised (e.g., Suicide Prevention Resource Centre, 2020; Byrne 2017).
In response, Watling and colleagues (2020) aimed to identify and synthesise available studies that describe the engagement of people with lived experience of suicidality in the development of suicide prevention interventions.
The authors conducted a rapid review (a streamlined, shortened version of a systematic review) to identify studies published between 2010 and 2019 that reported the development of a suicide prevention intervention using a person-based or similar design, including participants with lived experience of suicide or self-harm. Clinicians and researchers were considered as having “lived experience”, in addition to individuals who experience suicidal thoughts and/or behaviours and their families.
The authors searched ProQuest, PubMed, and Scopus using the following search string: “suicid*” AND (“focus group” OR “interview” OR “lived experience” OR “consumer”) AND “intervention”. Reference lists of the included studies were also searched. The following information was extracted: country, study aim, primary questions or stimulus for participants, design and analysis method, participant details, method used to integrate findings into the intervention, approach to intervention development, limitations and next steps as reported by the authors. A narrative synthesis of the findings was conducted.
The initial search retrieved 1,167 records; of these, 13 records reporting on 11 studies were included. All studies were conducted in western countries with almost half (n=5) conducted in the USA. Nine of the studies (82%) were published since 2015.
Study design and analysis
All studies used qualitative methods, most commonly focus groups, and two used quantitative methods in addition to the focus groups. In the majority of cases the focus groups included a combination of participant groups (e.g., consumers, family members, and clinicians) and their structure typically followed a pre-identified schedule set by the researchers, although in some cases a more stakeholder-driven approach was used. Some studies used the focus groups or qualitative interviews to obtain feedback on existing interventions. The majority of studies used standard qualitative techniques to analyse their data, following steps including familiarisation with the data, parallel coding with multiple coders, corroboration between coders, confirmation of codes, and identification of overarching themes. The authors noted, however, that it was not always clear which specific analytic techniques were used and recommended more transparency about this in future studies.
Integrating outcomes into intervention development
The authors also examined how the data collected informed the development or adaption of interventions, noting that this was not always clearly stated. In some cases, studies described how themes identified via qualitative analysis were translated into either components or targets of the intervention. Other studies used their findings to inform the intervention content, such as media campaign material or text messages which could be delivered to those experiencing suicidal thoughts or self-harm (e.g., Owens et al., 2011; Ftanou et al., 2018).
Approach to intervention development
Most studies did not describe a structured approach to intervention development. Rather, the interventions were developed iteratively, based on participant feedback and/or the scientific literature. Of the 13 studies, four did articulate a clear approach to the development of their interventions; three of which described approaches that specifically enabled incorporation of the views of people with lived experience. Of these three, two (Cwik 2016; Hetrick 2018) described using a “participatory approach”, which emphasises stakeholders’ active involvement across all stages of development and one (Larsen et al., 2016) employed a “patient-clinician-designer framework”, which engages patient and clinician stakeholders in intervention development.
Acceptability and feasibility studies
A number of the included studies either described the evaluation of the intervention or stated their intention to do this in future. All but one recommended that feasibility studies follow the development of the intervention, prior to more rigorous testing.
The authors identified that only 13 papers reporting on 11 studies over the past decade described engaging people with lived experience in the development of suicide prevention interventions. The studies retrieved in the review used similar methodological approaches but generally provided limited information about how this actually translated into the development or adaption of interventions. The authors recommended that in future, researchers not only seek to engage people with lived experience in order to ensure better alignment between the needs of suicidal persons and the treatment they receive, but also that they fully document the processes used to ensure transparency and to aide future studies.
Strengths and limitations
Given the potential benefits of including people with lived experience in the development of suicide prevention interventions, this review is timely and relevant. The authors have drawn attention to the lack of reported participatory research in suicide prevention, as well as inadequate reporting when it does occur. Their examination of not just how people with lived experience are engaged, but also how this engagement is translated into intervention development, emphasises the importance of meaningful (as opposed to tokenistic) engagement as well as transparent reporting. The use of blind double screening is also commendable.
We also note some limitations:
- The authors’ choice to include clinicians under the umbrella of “lived experience” is questionable; experience of providing care in a professional capacity may be considered quite distinct from personal experience of suicidal thoughts or self-harm or caring for a loved one who experiences these.
- It is unclear which fields were searched using the search string (e.g., whether just titles and abstracts were searched, if Medical Subject Headings (MeSH) were used). It is possible that the search strategy was overly narrow. In particular, the use of a single term relating to the concept of intervention may have resulted in other intervention-related terms (e.g., website, program) being missed.
- Specific inclusion and exclusion criteria were not stated, leading to a lack of clarity about exactly what types of studies or interventions were being sought.
- The introduction defines lived experience as personal experience of “suicidal thoughts, surviving a suicide attempt, having cared for someone through a suicidal crisis, or been bereaved by suicide”, yet in the methods the authors stated also searching for self-harm studies. Given that self-harm is sometimes defined as self-injurious behaviour without suicidal intent (Mangnall & Yurkovich, 2008), it would have been useful to introduce and define this concept earlier.
Implications for practice
This study has identified that currently involvement of people with lived experience of suicidal thoughts and behaviours in the development of suicide prevention interventions is lacking, and often reported on inadequately. This has a number of implications for both the conduct and reporting of future intervention research in suicide prevention:
- Researchers should endeavour to include people with lived experience in the development or adaption of suicide prevention interventions, ensuring that the methods chosen support this
- Researchers should report on these practices transparently
- Journals could consider requiring a statement of lived experience involvement with submitted papers
- Funding bodies should prioritise meaningful involvement of people with lived experience when choosing to fund intervention research
- There is a need for the development of frameworks to guide the involvement of people with lived experience in suicide prevention intervention research.
Statement of interests
The authors have published a study recently on the same topic, which involved surveying investigators regarding their experience of partnering with young people in suicide prevention intervention research (Bailey et al., 2020).
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