Public Involvement in Suicide Prevention Research
Written by Sophia Fedorowicz
Every year approximately 800 000 people take their own lives and around 20 times this number attempt suicide (World Health Organization, 2019). Suicide is the third leading cause of death among 15-29-year-olds globally and is recognised as a public health priority (World Health Organization, 2019).
People experiencing mental distress often experience inequalities in healthcare. This includes finding themselves excluded from being involved in risk assessments and discussions about their care options. Similarly, the patient experience is lacking in academic literature exploring the efficacy of suicide prevention in primary care.
My PhD is looking at people’s experiences of being assessed for risk of suicide in primary care. Eighty-seven per cent of patients who die by suicide are in contact with general practice services in the twelve months prior to their death (Leavey et al., 2016). These figures suggest many opportunities for intervention in healthcare settings, crucial considering eighty per cent of suicide survivors state that their suicide attempt could have been prevented (Ram, Darshan, Rao, & Honagodu, 2012).
The current study is an open-ended online survey seeking to understand people’s experiences of talking to their GPs about suicide. The responses will be analysed and interpreted by myself and a public involvement team to develop a comprehensive understanding of the patient experience and posit suggestions to improve the experience for future patients. The public involvement team is made up of volunteers from Expert Citizens, an independent group using their life experiences of homelessness, addiction, history of offending and mental health difficulties to advocate for users of support services to be directly involved in the design and delivery of services and research.
Phil Parkes is one of the volunteers working with me on this project. He uses his own experience of suicidal thoughts, feelings and behaviours to provide input into the project as a co-researcher:
“I have volunteered my time to help with this research because I believe the subject of suicide prevention in primary care is very important. I have seen assessments done in all manner of ways, some good, some not so good and some downright terrible examples that led me to be feeling more likely to make an attempt on my life than I was before I’d sat down. I believe these conversations with GPs should be done in a trauma informed way. I still have to endure suicide risk assessments on a regular basis, I know the procedure may not change for me but I am hopeful that during the process of this research we can highlight the good practice already going on in the area and spread that good practice to the areas who are not doing this so well.”
The Expert Citizen volunteers have provided input into the design of this study and assisted in the development of the participant information materials and the questions. The decision to use an online open-ended survey was reached after a discussion about how some people with experiences of suicide would rather disclose their experiences anonymously rather than take part in an interview – something that will be covered in a second study exploring patient experiences of suicide risk assessments in primary care. As Phil comments:
“We might get more honest answers this way although I do feel it’s more impersonal. The people who want to say something might divulge more because they’re not talking directly to another person”
The volunteers will also offer their insight into the findings of this study by viewing short anonymised excerpts of people’s responses along with my interpretations of those responses, providing suggestions for discussion in the manuscript and other dissemination outputs. Keep your eyes peeled for our follow up blogs about the findings and future projects.
Ram, D., Darshan, M. S., Rao, T. S., & Honagodu, A. R. (2012). Suicide prevention is possible: A perception after suicide attempt. Indian journal of psychiatry, 54(2), 172.
World Health Organisation. (2019). Suicide key facts. Retrieved from https://www.who.int/news-room/fact-sheets/detail/suicide
Phil has also written blogs for Expert Citizens and can be contacted by email: firstname.lastname@example.org
Sophia is always happy to talk about her research and can be contacted by email: email@example.com