Youth partnership in suicide prevention research: A co-designed GP guide for young people with self-harm or suicidal experiences.
“Every child has the right to express their views, feelings and wishes in all matters affecting them, and to have their views considered and taken seriously” (United Nations Convention on the Rights of the Child, Article 12, 1989) .
Young people with lived experience of self-harm or suicidal behaviour should be at the forefront of designing, evaluating and implementing suicide prevention research.
Controversial? Unfeasible? Risky? You name it. As a suicide prevention researcher I have heard it all…by funders, ethics committees, Higher Education Health and Safety committees to name a few. In this blog, I share my experience of working in partnership with young people with lived experience of self-harm and suicidal behaviour to co-design of a guide titled “Visiting your General Practitioner: A guide for young people with lived experience of self-harm and suicidality”.
Many young people experience thoughts of harming themselves or ending their life. Such thoughts can be very distressing, confusing and burdensome. We know that many young people find it very difficult to find the right words to describe how they feel; and seek help and support when feeling suicidal. Our research at the University of Birmingham showed that fear of being dismissed; difficulty with understanding and articulating distress; and concerns about confidentiality were some of the most commonly reported barriers among young people when seeking help from a GP. We were surprised to find how some young people in our study were uncertain about the role of a GP as a source of mental health support. Some young people, such as Hayley below, found themselves feeling confused as to why they were sitting in a GP waiting area:
“I remember sitting in the waiting room, and that was not pleasant because people were coughing and sneezing, and I was like ‘why am I here? I am not coughing or sneezing’. I had lots of internalised stigma about the GP, without really knowing it.” (Hayley)
I presented the findings of this study to the Youth Advisory Group (YAG), at the Institute for Mental Health, University of Birmingham. The YAG consists of 18 young people aged between 18-25 with experience of or a strong interest in youth mental health, who work collaboratively with researchers to create, shape and challenge research into youth mental health including self-harm and suicide prevention.
“What do we do with the findings of this study?”, “What should be our next steps?” were some of the questions raised in our YAG meetings. Young people were clear from the outset that the findings of our research have opened up opportunities for providing practical support and guidance to young people when talking to their GP about self-harm and suicidal experiences. Over a period of six months, we worked in partnership with young people to co-design a guide to do exactly that: provide support to young people with lived experience of self-harm or suicidal behaviour when seeking help from their GP; and, prepare them for their GP consultation.
Although there are no hard and fast rules about how to involve young people in research, having clearly defined and mutually agreed terms of reference ensured that young people were involved in a safe, inclusive, supportive and respectful way throughout the process. At this point, I should mention that having a Youth Participation Lead who can support young people and researchers navigate through the process of youth involvement and co-design is vital. This is relevant to all research activities but particularly so to those which might be perceived as sensitive or potentially distressing. Our Youth Participation Lead, who was present during our workshops, offered valuable support and guidance in relation to safeguarding ensuring the activities and process were safe and ethically sound.
Our approach to co-designing the GP guide was heavily influenced by international models of youth partnership and co-design including Orygen's key principles of co-design and the Youth Partnership toolkit. At the front and centre of our approach was: i) acknowledging that each one of us brings in a different set of skills and experience that is unique, respected and of equal value; and ii) having clear expectations about the objectives of the guide and the process of co-design; and clearly defined roles. Due to COVID-19 restrictions, our workshops took place remotely which meant that two things were important in ensuring young people’s involvement was feasible, acceptable and meaningful: flexibility and creativity. We offered young people a number of different ways in which they could share their insights including email, media tools, and online chats. We acknowledged that young people would be involved with varying levels of commitment depending on their availability, capacity and interests. Some young people were keen to contribute to content development by providing quotes or writing drafts while others opted to be involved in dissemination and outreach activities; such as this podcast hosted by one of our YAG members.
Once the content of the guide was finalised, young people raised the question: How do we bring this guide to life? The idea of creating a video to support the wider dissemination of the guide was very popular among our group and we soon found ourselves working with a digital creative consultant. The key aim was ensuring that young people’s unfiltered voices shone through the video.
On World Suicide Prevention Day (10 September 2021), we officially launched our new guide Visiting your General Practitioner: a guide for young people with lived experience of self-harm and suicidality and a video to support the dissemination of the guide. Both resources were designed by young people for young people with the aim of providing support and guidance with taking the first step towards getting help from a GP.
The guide offers vital information and advice on:
What to consider before you visit your GP, including preparing questions, booking an appointment and bringing someone along to support you.
How to manage the consultation, what your rights are with respect to confidentiality, what questions your doctor might ask you, and how to manage discussions about medication, how to co-create a safety plan with your doctor; and, referral to mental health services.
What to do after the GP consultation, including how to access professional support and resources, getting support from family and friends, and what to do if you are unhappy with how the consultation went.
Progress in suicide prevention research and implementation cannot be achieved without the meaningful involvement of youth voices. Involving young people in research that affects them can tangibly enrich the quality of our work and create opportunities for transformational change.
This blog was contributed by Dr Maria Michail who will spend will spend two years working with Orygen as part of a three-year Marie Skłodowska-Curie Actions Global Fellowship looking at expanding suicide prevention.