What is your work about?
We are currently working on two projects exploring suicide prevention at high-risk public locations. We are evaluating interventions including surveillance technology to identify/prevent potential suicide-related incidents (project 1, funded by NIHR) and interventions that encourage help-seeking such as signage and emergency phones when a person is in crisis at a public location (project 2, funded by Samaritans).
What were your aims of patient and public involvement?
It is essential that suicide prevention research is informed by and guided by people with lived/living experience of suicidality. Patient and public involvement in our projects aims to ensure:
- the research is done sensitively and compassionately,
- the objectives of the research are relevant and reflect the needs of the population, and
- the research methods and materials are appropriate.
Who did you involve and how did you find the right people?
In project 1 we work alongside a lived experience advisory group of 4–6 members who were recruited through the National Suicide Prevention Alliance (NSPA). Their experiences include being bereaved by suicide, having previously attempted suicide, living with suicidal thoughts, or a mixture of these experiences.
In project 2 we recruited two lived experience researchers to the team, again through NSPA, and they have experiences of suicide thoughts and attempts. As the NSPA already has an established panel of people with lived experience who contribute to research, it was very easy to recruit via their network and there was a lot of interest in our research.
How did you involve your lived experience members in the research?
The lived experience advisory group for project 1 have been involved at all stages of the project, including developing research ideas, designing the methods and research materials, developing the ethics application, advising on recruitment, helping us consider equity and inclusion, interpreting findings and co-producing research outputs. We meet with the group online four times a year, often asking for feedback or input on specific parts of the project and having discussions about the processes surrounding the research. However, this is very flexible and the group have reported that they feel comfortable to approach us between meetings and they feel supported to contribute in various ways.
The lived experience researchers in project 2 have been involved in developing the research methods, co-facilitating workshops and data collection, attending our regular online team meetings, supporting the interpretation of findings, and co-producing the research outputs.
We have also begun a series of knowledge exchange workshops with people who have lived experience and are part of the NSPA panel. This involves researchers and people with lived experience coming together to learn from each other, including how to carry out research from different perspectives. We are also co-producing a chapter for Sage’s Inclusive Research Methods book about the experience of collaborating with people who have lived experience in research.
What was the experience like for the team and persons with lived experience?
Our team greatly enjoy working with people who have lived experience. We have found that they are always incredibly engaged in the process and share insights we may never have otherwise considered. The rich expertise, knowledge and life experiences that they bring add so much to the research projects, whilst also helping us to learn and develop as researchers by challenging some of our taken-for-granted assumptions about suicide prevention.
“It’s been a privilege sharing lived experience of planning, the dynamic nature of risk and some of the emotions and psychological dimensions in relation to the volitional stage of suicide. That said it’s important to reflect that in research individuals arrive with transferable skills and other lifetime experiences which enable them to add value beyond their specific lived experience, for example in making ethical judgements. Having this holistic approach is vital when viewing the contributions that can be made by any individual with lived experience.”
“Being part of this research meant a lot, it felt like lived experience wasn’t just consulted, but actually shaped what we were doing. That made it real and it doesn’t hurt to be reminded of why having people with lived experience at the table is so important. My hope now is that the ideas we came up with don’t just sit in a report but actually get tried out and tested in real life, because everything we talked about came from a genuine place of wanting people to have another chance, another reason to hold on.”
“Lived experience around suicide prevention is an area so many people are scared of. There is still a lot of stigma and assumptions around what suicide/suicidality is, how those of us who’ve experienced it are weak somehow or that one wrong word could ‘set us off’. […] People are busy and bringing so many different experiences to the table, as well as hopes for what can be achieved in the future. That is a huge thing for suicide attempt survivors to experience. It was also good to have recognition of who wasn’t in the room. I’m becoming increasingly frustrated by the limitations of LE work, and how often the most vulnerable people who have the greatest need to be heard (literally or figuratively) are almost always represented but not actually present. It feels like these kinds of projects could be an important part of changing that going forward.”
What was the most challenging part of doing PPI and how did you overcome it?
The most challenging part has been recruiting a diverse group of people with lived experience. It is important to acknowledge that people from minoritised backgrounds are often not represented in research, and that researchers have a responsibility to ensure they reach out to these communities and create safe spaces for them to be able to participate. Liaising with charities representing different communities can be a useful step.
What advice would you give others interested in doing something like this?
Firstly, we need to make sure that findings don’t just ‘sit in a report’ but actually promote change to improve the lives of people who live with suicidal thoughts. Secondly, we need to challenge assumptions about people with lived experience being ‘weak’ and therefore unable to have a seat at the table. This means we need to make sure that those who may be considered ‘vulnerable’ are still able to have their voices heard through shaping research and should be given opportunities to do so. Taking a flexible approach to PPI can be helpful, so people are able to contribute in ways that are comfortable to them.
So, what’s next?
We are reaching the end of both projects, and we are excited to share our findings soon. Beyond that, we will continue doing research in collaboration with people who have lived experience to better understand suicide and effective prevention strategies.
