Presentation to NIHR INVOLVE conference 26/11/14

2.  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.

3.  SBNT: developed & originally tested as part of UKATT-UK
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.

4.  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.

5.  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.

6.  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.

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

8. 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”

9. “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)

10.  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.

11.  YSBNT project:
http://www.nets.nihr.ac.uk/news/all/2013/family-based-intervention-
adapted-to-support-young-substance-misusers
 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

12. 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.

13.  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?