Val Dunn talks about her experience of working with young people in the TC17 research project, and what they taught her about successful ‘PPI’.
In the first CLAHRC my work focused on mental health of vulnerable young people facing transitions in their care arrangements at 17 such as care leavers and youngsters leaving Child and Adolescent Mental Health Services (CAMHS). We worked closely with local authorities and NHS Trusts and Cambridge University. The early stages, populated by round after round of planning meetings, I now realise were less about the details of the research than building relationships, trust and finding a common language. It dawned on me gradually that while the research may be my own priority that wasn’t the case for the heads of service, clinicians, consultants, nurses and social workers with whom we were working – and for good reason of course; recently a local authority manager, late for our meeting, explained that a previous meeting had over-run as decisions had to be made about whether or not to split up a young brother and sister coming into care. The shortage of foster placements meant they couldn’t be placed together. Suddenly questionnaires and information leaflets paled into insignificance. As field work commenced it was clear that the staff we were relying on to recruit participants were over-stretched clinicians and social workers operating under huge pressure and financial constraints. The result was a smaller sample than needed which limits the scope of our conclusions and recommendations.
The highs have far outweighed the difficulties though. Particularly in the work that we have done involving young people in our research. The CLAHRC commitment to patient and public involvement (PPI) in research was not a familiar concept five years ago in our rather traditional academic research department, so our initial attempts at consulting young people on the measures and participant literature in our study were a bit clumsy for example one young man objected to the word ‘study’ explaining that ‘it makes us sound like specimens, like you put us under a microscope’. I realised we were a long way from gold standard PPI principles in which research is something we do WITH people rather than TO them.
Our rather cavalier use of language worried me. Did we really understand our population and the issues they face? We needed young people in care to ‘plug us in’ and tell us what it’s like to be taken away from your family and placed among strangers, how it feels to live on your own at 17 without the support of a close family when things go wrong. We needed to involve and enthuse young people creatively and give them a voice. We did this by designing an animation project which offered the young people involved in our project the opportunity to share their views and experiences, learn new skills, work creatively with a group of professionals, develop self-expression and team-working skills and safely explore sensitive issues. The resulting films, My Name is Joe and the award-winning Finding My Way are having considerable impact with jointly over 5,500 views on YouTube. Finding my Way was awarded best documentary at the BFI Future Film Awards in 2014 (15-18 age group). ‘Joe’ is being used to train foster carers and social workers all over the country and is now part of the Fostering Network’s Skills to Foster training for prospective foster carers. And the best bit is the pride the young people themselves feel in their achievement.
So what have I learned? Effective collaboration relies on laying solid foundations and giving partners the freedom to play to their strengths. Togetherness is great but so is autonomy. Researchers need to remain objective outsiders and as such are well-placed to identify pertinent research questions, but we need to put in the time and energy to understand our partners’ perspectives, be sensitive to the myriad other demands on their time and actively listen and learn from their experiences and expertise. We need to be realistic and patient but always ambitious. Finally we need to take the time from the outset to involve stakeholders at all levels: exclusive board-room collaborations won’t get us very far.
For more information on the TC17 project, please see here