Introduction
The Institute for Mental Health Youth Advisory Group (IMH YAG) is comprised of a group of young people aged 18-25 with experience of mental health difficulties and/or supporting a young person with mental health difficulties.
Through frequent engagement, YAG members support the IMH to address challenges in youth mental health through research.
Partners
The IMH YAG is led and supported by Youth Involvement Co-Leads, Mr Niyah Campbell and Ms Charlotte Saunders. The Youth Involvement Co-Leads are responsible for developing and supporting youth involvement activity at the IMH.
Since its inception in October 2018, the IMH YAG has worked with several notable organisations .
Partner organisation include:
Purpose
The IMH YAG has the following core objectives:
- To commit to meaningful involvement and engagement practice (ranging from consultation through to co-production), in order to produce relevant and authentic mental health research that prioritises the needs of young people.
- To provide a platform for young people, particularly those with lived experience of mental health challenges, to create, shape and challenge mental health research.
- To provide young people with access to opportunities for personal and professional development within and beyond the research space.
- To strengthen channels of communication between young people and researchers – promoting open dialogue about research studies in an accessible way.
Background
The Institute for Mental Health (IMH)
The Institute for Mental Health (IMH) has been established to maximise the collaborative efforts of academics at the University of Birmingham, and builds on the strong existing partnerships with practice in the NHS; established through Birmingham Health Partners, Forward Thinking Birmingham, and Birmingham and Solihull Mental Health NHS Foundation Trust.
Through interdisciplinary research the IMH works to improve the outcomes and care for young people with mental health problems. We will do this by working together to understand the causes of poor mental health, prevent mental health problems from developing, and respond to established illness by developing new treatments and services.
The Youth Advisory Group (YAG)
Identifying and implementing meaningful ways of involving young people has been an essential part of the Institute for Mental Health’s approach to conducting research since its inception in 2018. In October 2018, the IMH recruited a group of eight young people aged 18-25 years with lived experience of mental health difficulty or supporting a young person with lived experience to form the IMH Youth Advisory Group (YAG). Supported by the IMH’s Youth Involvement Co-Lead, Mr Niyah Campbell, the group met on a monthly basis to engage with researchers developing resources and research proposals related to youth mental health.
Subsequent months saw a steady increase in requests from researchers to engage with YAG members as the benefits of having their input become more apparent. The increase in interest presented an opportunity to involve more young people and so a recruitment campaign was launched in January 2019 to seek additional YAG members. The recruitment campaign consisted of promotional videos that were posted on social media and sharing news of the opportunity to apply through Birmingham-based, youth-focussed organisations (e.g. The Lightpost, GirlDreamer). In March 2019, ten more young people joined the IMH YAG, bringing the total number of YAG members to 18.
Since that point, the IMH’s Youth Involvement Co-Leads have worked with this group to involve them in the IMH’s activity.
Approach
IMH YAG members have been involved in a wide array of activities that are best encapsulated using the term ‘Patient and Public Involvement and Engagement (PPIE).
The ‘Public and Patient Involvement’ part of this term refers to actively working in partnership with YAG members to plan, manage, design and carry out research. It is “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them” – NIHR INVOLVE.
The ‘Engagement’ aspect refers to activities that are undertaken in collaboration with YAG members to share knowledge and resources that are generated through the IMH’s work with relevant audiences.
In line with guidance from the NIHR Centre for Engagement and Dissemination, YAG members are offered honorarium for their involvement.
Informing
- Introducing keynote speakers at the Institute for Mental Health Inaugural Forum in October 2018.
- Presenting at key events such as the National Suicide Prevention Alliance Annual Meeting in September 2019 and the HSBC – Birmingham Children’s Hospital – University of Birmingham ‘Anti-bullying partnership’ launch event in November 2019.
- Participating in a Q&A panel session ‘Where’s my story’ – An event hosted by the Shakespeare Institute at the Royal Shakespeare Company in May 2019 to discuss the impact of representation in theatre on young people’s mental health.
Consulting
- Attending monthly meetings with IMH researchers to discuss proposed research studies.
- Providing feedback on research proposals and study-related materials.
- Contributing to discussions at ‘sandpit events’ hosted by The Lancet Psychiatry, Emerging Minds and UKRI.
- Attending the NIHR INVOLVE Children and Young People’s Event in November 2019.
- Writing articles for the Institute for Mental Health blog and coordinating ‘social media takeover’ with live tweets at events.
- Assessing and reviewing multiple research proposals.
Collaborating
- Co-delivering a workshop ‘Youth Involvement in Mental Health Research’ for delegates at the Institute for Mental Health and Centre for Human Brain Health Launch Event, September 2019.
- Co-delivering lectures to University of Birmingham students. YAG members have co-led lectures for students studying BSc Neuroscience, MSc Health Management and BSc Nursing at University of Birmingham. Within these sessions, YAG members have provided valuable insights into mental health service use from the perspective of a young person and shared their views on the value of public and patient involvement in health and social care research.
- Co-producing a book chapter in “Children and Young People’s Mental Health”.YAG members worked with Dr Sarah-Jane Fenton and Dr Sarah Carr to co-produce a chapter on “Valuing Youth Involvement In Mental Health Service Design and Delivery”
- Co-producing materials about the role of Primary Care in supporting young people experiencing self-harm and suicidality. Working with Dr Maria Michail, YAG members have co-produced training videos for GPs and guidance for young people on seeking support from GPs. YAG members have also taken part in online events to aid the dissemination of materials.
- Participating in discussions at the IMH Research Strategy Meetings.
- Contributing to the development of the University of Birmingham’s MSc in Mental Health programme.
Training
- Attending relevant workshops/trainings as identified by the IMH Youth Involvement Co-Leads.
Social events
- Attending social events such as “Blue Orange” at the Birmingham REP, TEDxYouthBrum, HEADSPVCE by Beatfreeks, Christmas meals and IMH Summer BBQ.
- Attending regular social drop ins on Zoom hosted by the IMH Co-Leads throughout lockdown to provide space for for engagement.
Evaluation
The IMH Youth Involvement Co-Leads regularly capture information on the impact of YAG involvement. Researchers that have engaged with the YAG are required provide feedback on the impact of the group’s involvement within three months of having engaged with YAG members. This information is shared with YAG members and stored by the Youth Involvement Leads.
Additionally, each year the IMH produce an Annual Report detailing progress across many aspects of its work. A section of the report is dedicated to Youth Involvement activity and a summary of the groups activity is provided here.
Furthermore, the Youth Involvement Co-leads maintain open dialogue with YAG members. Through regular contact, they gauge how activities have been received and experienced. This is also gauged through 6-monthly, one-to-ones that YAG members partake in with the Youth Involvement Co-Leads.
Lessons Learnt
A great deal has been learned since the IMH YAG was first set up in 2018. In developing our practice, we have followed guidance outlined by NIHR Involve/NIHR Centre for Engagement and Dissemination and equally embraced having an ‘organic approach’ to certain aspects of our practice. By this, we mean that have felt comfortable and confident to try new things as part of our engagement with YAG members, being sure to check with YAG members on what has and hasn’t worked for them to inform our practice
We are currently in the process of co-developing an ‘IMH Youth Involvement Strategy’ with IMH staff and YAG members. The development of this strategy serves to identify what our collective aims for youth involvement at the IMH are and developing a roadmap to achieving these aims.
Our Youth Involvement Co-Leads frequently engaged in events on Public and Patient Involvement/Public Engagement with the aim of learning from others and contributing to discussions on practice in this area. Mr Niyah Campbell was recently involved as a Peer Researcher in the PEP Insights Research Study and is actively involved in the 2021 – 2022 Engage Academy as a Learning Group Mentor.
Legacy
Benefits for YAG members
YAG membership has served as a platform for development for many young people that we have engaged with. Being a YAG member provides the opportunity for young people to learn about youth mental health and research. Following involvement with the IMH, YAG members have gone on to uptake involvement with other mental health groups and references provided by the Youth Involvement Co-Leads have supported YAG members in applying for education and employment opportunities.
YAG members have also developed positive working relationships with each other, and with IMH staff. The camaraderie within the YAG has been identified as one of the key benefits of being a part of the group. Circumstances brought on by mental health difficulties (and more recently Covid-19) can often serve to isolate young people. However, the IMH YAG has served as a place for young people with lived experience of mental health difficulties to work together as part of an understanding and inclusive community.
“By including young people throughout the research process, it ensures the research being done is relevant and useful to young people and gives us an active voice to drive the research forward. Instead of it being done for us, it’s done with us, and that is such an innovative yet crucial step in order to progress research” Lizzie, YAG member
Benefits for the IMH
The involvement of YAG members has been incredibly influential in the success of the IMH. Involvement of young people strengthens the work that we do by ensuring that it is relevant to young people and that the approaches taken are appropriate.
Over time, IMH researchers have become increasingly accustomed with the principles of service user involvement and co-production. This comes as a result of having first-hand experience of engaging with YAG members and through regular contact with our Youth Involvement Co-Leads. The development of a new Youth Involvement Strategy at this stage serves as an opportunity to consolidate our learnings and aims for future practice onto a formal document. The document will guide actions that will be taken in the forthcoming months and years to level up existing youth involvement practices at the IMH.
Benefits for the wider community
The IMH works closely with YAG members to identify ways of best communicating learnings from its research with the wider community. Examples of instances where the IMH YAG have been involved in this activity are:
- Co-leading seminars for University of Birmingham students
- Co-presenting at research dissemination events
- Taking part in panel discussions on the topic of youth mental health
In September 2019, the IMH YAG was awarded £2,000 by the University of Birmingham’s Public Engagement Team as part of the University’s internal Public Engagement Fund. The funds will be used to co-produce a half-day youth mental health conference to be hosted at The Edgbaston Park Hotel, University of Birmingham. Invitations to the event will be extended to young people from areas of high deprivation in Birmingham.
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