Why I got involved

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work with researchers throughout the project. ▻ Best laid plans! – this model did not work as we hoped so we have developed a more flexible & localised model.




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Social Behaviour & Network Therapy (SBNT) is an evidence-based adult intervention (a form of ‘talking therapy’) for people with alcohol/drug problems. Our project is testing the feasibility of an adapted version of SBNT for young people (aged 14-18 years): Y-SBNT. 30 month study (2013-2015), funded by NIHR Health Technology Assessment Programme. Adapt intervention then run a feasibility trial in two clinical sites.









SBNT: developed & originally tested as part of UKATTUK Alcohol Treatment Trial - other studies since then. Based on the idea that the chances of success for people with alcohol/drug problems are greater when there is additional support from one or more people (who may also engage with treatment sessions). Aim of Y-SBNT is to help young people develop and use positive social support for a change in drinking or using drugs, both during engagement with the service and beyond. Intervention works through a series of 6 sessions focused on a range of relevant topics.





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Increasing interest in children and young people (CYP)’s involvement in research, both as sources of data and through their active involvement in the planning and process of research. Need for more involvement reflected in recent legislation and policy, including in NHS structures and processes. Increasing recognition that involving CYP in research is not the same as involving adults. Debates in patient and public involvement about who does, and who doesn’t, get involved in research.







Important throughout the 3 main phases of the study. ◦ Phase 1: Adaptation of Y-SBNT intervention. ◦ Phase 2: Feasibility trial ◦ Phase 3: Analysis, writing up & dissemination Initial aim: set-up & run a national advisory group (YP with experience of alcohol/drug services) to work with researchers throughout the project. Best laid plans! – this model did not work as we hoped so we have developed a more flexible & localised model.





Worked with different drug and alcohol services to recruit young people who have treatment experience. So far we have engaged 10 young people from 5 different parts of England: ◦ London, Cornwall, Bristol, Birmingham & Oxfordshire. ◦ 7 female & 3 male, aged 17-21.



15 meetings attended by one or more young people: ◦ Met with 5 YP on more than 1 occasion, including at 3 advisory group meetings.

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Commented on research materials. Explored the idea of social networks and how these may differ for YP as opposed to adults. Discussed what YP find helpful, or what are barriers, to YP engaging with services. Developed materials to be used in training materials and the Y-SBNT manual. Contributed to a newsletter for YP involved with the project. Meet with trial researchers to pilot questionnaires.

Why I got involved “it’s important that young people can get the help that they need in the most helpful and supportive way so it doesn’t damage them...it’s not just about young people in isolation but who they interact with as this can affect who they are [so] including a young person’s social network in their intervention is incredibly important as they need as much help as they can”

What I’ve gained from been involved “I think I’ve gained an insight in to research with young people and the opinions of young people held by social agencies and professional networks....I didn’t realise just how useful I’d find it, hearing everyone’s experiences is wonderful, everyone’s unique and that’s very comforting”

“Doing this now makes me realise how few helpful people I had. If I’d done this activity a year ago then I think things would be a lot clearer to me. Doing this has also helped me realise that there were some really unhelpful and destructive people in my life. Looking at it now all the helpful people are in totally separate areas of my life – if I’d been able to think of this sooner I could have channelled my time in to getting more from these helpful people, and could have made more responsible and insightful decisions, rather than almost dropping out of college. Back then it was all about instant gratification and instant rewards; I couldn’t do something that would only reward me later” (B, aged 18)











YP’s involvement has been extremely helpful and has informed key elements of the intervention. But this is a group of YP who are less frequently heard and can be difficult to access and to keep engaged. Traditional advisory group model in one location hasn’t been effective or accessible. Flexible, local and YP-centred engagement has worked better but YP also want to meet the whole team and each other! Managing sensitive nature of topics discussed and personal nature of the work.



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YSBNT project: http://www.nets.nihr.ac.uk/news/all/2013/family-basedintervention-adapted-to-support-young-substancemisusers More information on project: http://www.nets.nihr.ac.uk/projects/hta/116001 LM’s blog, including information about the project: www.younghealthparticipation.com @louca_mai

Grateful thanks the project team, all the young people who have been involved in the project, and all the services and staff who supported their involvement. Funder: The Y-SBNT project is funded by the National Institute for Health Research HTA programme (project number 11/60/01).

Disclaimer: The views and opinions expressed in this presentation are those of the presenters and do not necessarily reflect those of the HTA, NIHR, NHS or the Department of Health.







How inclusive is public involvement with CYP? Who gets involved, and who doesn’t? What are the challenges in recruiting and retaining ‘seldom heard’ young people, and how can these be overcome? How can we best involve CYP in health and social care research? Do we need a range of models?