Involving children and young people in research – PRWE forum

There is increasing interest in children and young people’s involvement in health, public health and social care research. In early 2013 People and Research West of England decided to create a forum for researchers in the area who are involving children and young people in research and/or interested in patient and public involvement (PPI) with children and young people to come together to hear about each others work; explore some of the common issues of working with these groups and to learn from each others experiences.

The first meeting of this group took place in April 2013, and this is my presentation from that event:

Follow this event a second meeting was organised on 20th November 2013 by Claire Novak, Research Fellow at the Centre for Child and Adolescent Health, University of Bristol. Below is a report from the day which was attended by 15 researchers from universities, NHS Trusts and the voluntary sector.

We started off with a presentation about definitions of public involvement and how these relate (or don’t) to children’s rights:

The recent UN Committee Rights of the Child General Comment on Article 24 (the right of the child to the enjoyment of the highest attainable standard of health) and it’s relation to participation rights can be found here. The INVOLVE Briefing Notes for Researchers include the definitions of involvement, participation and engagement discussed.

This was followed by a presentation by Barry Percy-Smith, Associate Professor of Childhood, Youth and Participatory Practice at the University of the West of England on ‘issues, challenges and possibilities’ in children and young people’s participation:

Further information on Barry’s work and the papers he referenced are available here.

We then had three practical examples of applying these principles into practice. I started by talking about the challenges faced in involving young people in a study in which I’m leading the public involvement with my colleague Lorna Templeton:

Claire Novak then talked about her work supporting the Young People Advisory Groups run by The Centre for Child and Adolescent Health, UWE/UoB :

Since 2010 the Centre for Child and Adolescent Health (CCAH) have run two school-based Young Peoples Advisory Groups (YPAGs) in Redland Post 16 Centre and latterly, Fairfield School. The YPAG Redland Green Post 16 Centre is now in its fourth year and is made up of young people aged 16-17 years who have either been educated at the Redland Green School or in one of the feeder schools across Bristol. Fairfield School is one of these and we have a YPAG there, now in its third year. This is made up of 14-15 year olds with a wide range of different heritages. The YPAG model we devised provides a mutually beneficial vehicle through which to access young people as “experts” on being young people rather than a specific condition or disease. The YPAGs meet weekly during a lunch-time where we provide snacks and drinks. All those attending are volunteers who are encouraged by the school staff to be involved. Working with the CCAH is seen as providing a broadening experience and adding value to their school work. It is promoted as enhancing the members portfolio and “making them stand out” when applying for college, university or employment.

In the last few years, researchers have consulted on study proposals, associated documents, research tools such as questionnaires, on research ideas, testing smart phone apps including accessibility and user-friendliness. The YPAG have provided high quality critiques and helpful advice which have been incorporated into research study and ethics applications. They have also acted as focus groups and advised on initial ideas for research.  Initially, the consultations were from within CCAH. However recent developments have engendered consultations from other organisations such as Centre for Appearance Research, UWE and Canynge Hall, UoB. Researchers range from undergraduate, MSc, PhD students  through to professional researchers. The YPAGs have also devised, conducted and presented their own research to members of the CCAH following a programme of learning about research developed by the Team to provide continuity of contact and retention of the YPAG members during those weeks when no consultation/ opinion is required. The development of the model YPAG also promotes good practice, strong relationships and positive experiences for potential university applicants.

Makaela Jacobs-Pearson then talked about the work that Children of the 90s (ALSPAC) have been doing to involve young people in their work:

The Original Cohort Advisory Panel (OCAP) was first set up in 2006 as the Teenage Advisory Panel (TAP) and is the Children of the 90s (Co90s) advisory panel of study young people. Over the past seven years it has developed into a group of twenty-three participants who meet six times a year. OCAP members take an active role in organising and running these meetings, whilst still being supported by the Participation Team, and have two chairs, a secretary and a minute-talker. All members are volunteers and receive no payment for being part of the panel, although travel costs, expenses and refreshments are provided.

As a panel, the OCAP members are able to comment and give feedback on (and ultimately shape) many areas of the study. These include questionnaires, clinics/sub-study design and documentation, research proposals on use of ALSPAC data, newsletters, website design and much more. In the last year they have created a ‘Participant Information Sheet’ (PIS) guideline document to help ensure that all information sent to participants is presented in a user-friendly manner, whilst still containing all the relevant information. OCAP members may also volunteer to represent Co90s at wider public and scientific events across the country.

As some of the members of the study are no longer living in Bristol, every effort is made to ensure that they are all able to contribute, with many now Skyping in to meetings or submitting comments via emails and the OCAP Facebook page.

Being an OCAP member provides these participants with a great opportunity to get involved with a world-renowned scientific project, to learn more about research and to gain experience of working in a team, project planning, public speaking and potentially working with the media. OCAP play a valuable and integral role in shaping the future of the Co90s study.

These presentations were followed by some general discussion and a ‘world cafe’ and a report on these discussions is attached here.

More information on future meetings will be posted on this blog, and we hope that these discussions will continue at a national level. Watch this space…

Embedding young people’s participation in health – workshop at AYPH/YPHSIG conference Oct 13

Further to the event in the summer (see earlier blog posts), I followed this up with a workshop at the Association for Young People’s Health (AYPH) and RCPCH Young People’s Health Special Interest Group (YPHSIG) conference on ‘addressing young people’s health inequalities’ in London on 18th October.

My co-presenters were:

  • Dawn Rees from the Office of the Children’s Commissioner talking about the challenges and opportunities facing clinicians, commissioners, mangers, policy makers and the government in embedding children and young people’s participation in health services, with particular reference to the UN Convention on the Rights of the Child and current policy and practice in England.
  • Bekki Redshaw from Healthwatch Torbay talking about the exciting work they’re doing to engage young people effectively within the new health system in England
  • Damian Wood (YPHSIG Convenor, 2009-2012), Bharti Mephani and young people from the RCPCH youth advisory panel giving examples of some of the ways in which they’ve influenced child health policy and practice. I hope to include some thoughts from the young people and the video they showed at a later date, so watch this post for updates if you’re interested.

The presentation from the workshop is below:

In line with the aim of this being an ongoing conversation I then outlined the draft findings from the July workshop (see previous post). Participants then had an opportunity to reflect on their own experience and consider what it might mean for them to embed children and young people’s participation in their service or organisation. Unfortunately we were running short on time, but people were directed to this blog and the #cyphsc Twitter to tag to continue the conversation.

Learning from this workshop will also inform the work of the RCPCH, YPHSIG and OCC to advocate for improved healthcare for children and young people, as well as the next stages of this research. Watch this space for more as the conversation continues…