More on involving children and young people in research: guest post on the BMJ Archives of Disease in Childhood blog

Paediatric clinicians and others in related fields are very aware of including young people in their clinical work, but what about making it happen in research? Following the recent INVOLVE conference, I was asked to write a guest post for the BMJ Archives of Disease in Childhood which briefly outlines why this matters and how it could be taken forward:

Guest Blog: Involving children and young people in health and social care research: the need for a new perspective

Comments and ideas – as always – are very welcome!

Public involvement with children and young people – some reflections from INVOLVE 2014

I’m still buzzing with ideas after last week’s INVOLVE conference. It was great to launch the social media guidance, which generated some really interesting conversations  – watch out for a tweet chat in January, further details to be confirmed. But the focus of this post is on the involvement of children and young people in research (although of course social media does come into this), and I wanted to follow up my last post on this topic with a conference-related update.

I was part of a great session on children and young people’s involvement which was chaired by Erin Walker, who supports the CRN CC Children Specialty’s Young Person’s Advisory Group in London. Fellow presenters included Hayley Reed talking about the exciting work DECIPHer are doing with their ALPHA young people’s research advisory group. Having had links with ALPHA in the past it’s great to see them going from strength to strength and developing some really innovative ways of working with researchers. The final presentation was by Valerie Dunn on ‘engaging young people in care through animation’. More information on the fantastic films she made with young people can be found here.

Both presentations linked really well with the one I co-presented on ‘involving children and young people in research: the usual suspects’. My co-presenters were Lorna Templeton and S, a young advisor to the project. Our presentation (below) focused on our attempts to involve young people in the ‘Youth Social Behaviour and Network Therapy’ (YSBNT) Study*, and explored what we are learning about involving a ‘seldom heard’ group of young people  in research:

A few reflections:

It was great to meet so many people with an interest in children and young people’s involvement in research, and to feel that the interest in this area is growing. A few people commented on the lack of children and young people at the conference (a recurring theme), and the need for a specific stream at the conference and/or a dedicated national event on this topic. This has come up in the past (for example here) and is certainly something I’ll discuss further with the INVOLVE advisory group.

  • Any other thoughts from people who attended the conference?
  • Are others also interested in a community of practice on children and young people’s involvement in research?

*The Y-SBNT project is funded by the National Institute for Health Research HTA programme (project number 11/60/01). The views and opinions expressed in this post are those of the author and do not necessarily reflect those of the HTA, NIHR, NHS or the Department of Health.

Researching children’s everyday lives: presentation from CSCY conference

I’ve just come back from a great couple of days in Sheffield at the Centre for the Study of Childhood and Youth conference ‘Researching children’s everyday lives: socio-cultural contexts’. I’m just sorry I had to leave before the end! But while it’s all still fresh in my mind I thought I’d post up the slides on and some background notes from the presentation I gave on some of the ideas emerging from my research:


The starting point for my research is that, despite increasing profile of children and young people’s participation, there’s a lack of evidence about how to ensure it is meaningful, effective and sustained – and especially in health services and research.

As came up in quite a few of the other presentations, ‘childhood’ has many and varied definitions including ‘the status of being a minor, the early-life state of immaturity whether actual or ascribed and the process of growing towards adulthood’ (Alderson, 2013; my italics). Theoretical approaches to childhood in the minority world have been dominated by developmental psychology, and the idea ‘that what children mainly do during childhood is develop towards adulthood’ (Mayall, in press). Also the idea that children are above all to be protected and provided for in order that they may develop well and be prepared to enter into the public domain upon reaching adulthood. Childhood studies, and in particular the sociology of childhood, has challenged these ideas of children being apolitical adults-in-waiting, and instead developed paradigms of children as social actors and childhood as a social space in which children can and do have agency (see references below).

Navigating the landscape

Within England there is widespread acknowledgement that children and young people should be involved in decisions which affect them, and this is increasingly reflected in law, guidance, regulation and policy in relation to health and more widely. The Children and Families Act 2014 mentions children’s rights and the UN Convention on the Rights of the Child, and public involvement is also a key element of the Health and Social Care Act 2012. Increasing awareness of the importance of developing children and young people’s participation in health services in a strategic and systematic way. Patients working in partnership with clinicians and carers in decisions about their healthcare is one of the guiding principles of the 2013 NHS Constitution. In their response to the Children’s Health Outcomes Forum report the UK government acknowledged the importance of children’s rights and the CRC being at the heart of health and social care. The recent Chief Medical Officer’s Report talks about the expectation inherent in the NHS Constitution ‘that patients, service users and the public participate nationally and locally in the development, implementation and accountability processes of health and social care policy and services’. The report goes on to emphasise the importance of the CRC to these participation processes and say that:

“This expectation for patient and public participation has no age limit. Children and young people…should be encouraged and facilitated to participate in decisions about their own care and, more broadly, about the health and social care services and policies that affect them”.

Recent developments at a national level include the NHS England Youth Forum, new children’s experience measures within NHS, The Care Quality Commission involving CYP in their inspection activities, and the involvement of children and young people on the board of Healthwatch England and within local Healthwatch bodies. I also discussed the use of rights-based tools and quality criteria such as ‘Hear by Right’, ‘You’re Welcome’ and Young People Friendly.

Children’s rights

I briefly touched on definitions and models of participation (a topic for another post!) and the UN Convention on the Rights of the Child (CRC), in particular Articles 12 (every child and young person has the right to express his or her views freely in all matters affecting them) and Article 24 (children have the right to good quality health care and information to help them stay healthy). A key implication of the CRC is that all children have needs that must be met in order to optimise their health and wellbeing, and the CRC establishes international recognition that all children and young people have a right to the highest possible standards of both healthcare and participation. In a 2013 General Comment on Article 24 the UN Committee on the Rights of the Child emphasised ‘the importance of approaching children’s health from a child-rights perspective’, and say that:

“Article 12 highlights the importance of children’s participation…This includes their views on all aspects of health provisions, including, for example, what services are needed, how and where they are best provided, barriers to accessing or using services, the quality of the services and the attitudes of health professionals, how to strengthen children’s capacities to take increasing levels of responsibility for their own health and development, and how to involve them more effectively in the provision of services, as peer educators. States are encouraged to conduct regular participatory consultations, which are adapted to the age and maturity of the child, and research with children, and to do this separately with their parents, in order to learn about their health challenges, developmental needs and expectations as a contribution to the design of effective interventions and health programmes (General Comment 15, section II.E. My emphases).

This quote sets out in far more detail that the CRC itself the Committee’s view on what these rights mean in practice for children and young people, both within decisions about their own care and in the development of health services and research.

My research

I then outlined my research in a bit more detail and talked about the two case studies with whom I have now been working for almost a year, exploring how the rhetoric around children and young people’s participation in health services and research becomes reality.  We’re currently coming to the end of fieldwork so I’ll post more later in the year about emerging findings.

We then discussed the ideas on what it means to ‘embed’ children and young people’s participation in health services and research, and I outlined the discussions which took place at last summer’s workshop with the Children’s Commissioner and others – the report on the day includes details of the elements discussed on the penultimate slide.

Many thanks to everyone who came to the presentation and/or who I met at the conference later on. I came away buzzing with ideas and inspiration, and hopefully we can continue to keep in touch via twitter, the blog or more traditional means! If you’re interested in contributing to the debates and weren’t at the conference please feel free to comment on this post or via twitter too!

Selected references

Alderson, P. (2013). Childhoods Real and Imagined. Volume 1: an introduction to critical realism and childhood studies. London: Routledge

Alderson, P. (2014). Children as Patients. In G. Melton, A. Ben-Arieh, J. Cashmore, G. Goodman, & N. Worlet (Eds.), The Sage Handbook of Child Research (pp. 100–117). London: Sage.

Brady, L.M., Davey C., Shaw, C. and Blades, R. (2012) Involving children and young people in research – principles into practice. In Beresford, P. and Carr, S. (2012) Social Care, Service Users and User Involvement: building on research. London: Jessica Kingsley, pp.226-242.

Cockburn, T. (2005). Children’s Participation in Social Policy: Inclusion, Chimera or Authenticity? Social Policy and Society. 4 (2), pp. 109-119.

Franklin, A., & Sloper, P. (2005). Listening and responding? Children’s participation in health care within England. International Journal of Children’s Rights, 13, 11–29.

Freeman, M. (1998). The sociology of childhood and children’s rights. The International Journal of Children’s Rights. 6, 433-444.

James, A. and Prout, A. (1997). Constructing and reconstructing childhood: contemporary issues in the sociological study of childhood. London, Falmer Press.

Jans. (2004). Children as Citizens: Towards a Contemporary Notion of Child Participation. Childhood.11(1), 27-44.

Jenks, C. (2005). Childhood. 2nd ed. London: Routledge

Kirby, P., Lanyon, C., Cronin, K. and Sinclair, R. (2003) Building a Culture of Participation: involving children and young people in policy, service planning, delivery and evaluation. London: DfES.

Mayall, B. (in press). The Sociology of Childhoood and Children’s Rights. In Vandenhole. W. et al (eds) Children’s Rights: Global perspectives and critical perspectives. Publisher tbc

Percy-Smith, B., and Thomas, N. eds. (2010) A Handbook of Children’s Participation: Perspectives from Theory and Practice, London: Routledge.

Qvortrup, J.,Corsaro, W.A., and Honig, M.S. (2009).The Palgrave Handbook of Childhood Studies. Basingstoke: Palgrave Macmillan




Embedding children and young people’s participation in health services and research – UCLan seminar May 2014

Last month I was invited, along with Dan Moxon from People, Dialogue and Change, to present at a one of the regular seminars organised by the UCLan Centre for Children and Young People’s Participation.

The seminar was on children and young people’s participation in health services and research (see flyer:12 May Louca Mai Dan Moxon POSTER). Both Dan and I discussed the work we’re doing in this area and, although a select audience, then had some really interesting discussions with those who attended. The recording of the event can be found here.

In my presentation I explored emerging findings from my research on what it means ‘embed’ children and young people’s participation in health services and research, including reflecting on learning from workshops in July and October last year:

Dan then went on to discuss some of the great work he’s doing in this area:

The discussions that followed raised some really interesting issues, which will inform the next phase of this work. Many thanks to Nigel Thomas and UCLan for hosting. It also very much like the start of a conversation, which you’re very welcome to join via this blog if you couldn’t make it on the day.

Good participation in health services – a young person’s perspective

As this blog is all about children and young people’s participation, another contribution from a young person was well overdue. The post below was written by Felicity, a young woman I’ve been working with at the Community Children’s Health Partnership in Bristol, as part of the research we’re doing together on embedding children and young people’s participation in health services and research. The post needs no further introduction – other than to say that this is why children and young people’s participation in health services matters…


The Community Children’s Health Partnership is a partnership between Children’s Services in North Bristol Trust and a Barnardo’s Project called HYPE (Helping Young People Engage).

As a young person that has been involved with CCHP for nearly five years (and CAMHS for seven years), I jumped at the chance to become involved in developing the new ‘Participation Strategy’. Over the last six months I have been working with seven other young people. Collectively, we have experience of ten different services within CCHP and as a result, we know first-hand that there is a lot of great participation happening but also that the journey is not complete.

We wanted to be involved in developing the strategy to help embed participation on every level across the partnership. Drawing up this strategy gives participation the same importance as any other policy and provides a standard and formal tool for professionals to measure their performance against.

We met on several occasions with staff from CCHP. This partnership seemed to ignite a lot of enthusiasm and discussion. We tried to use creativity in our meetings, which was somewhat novel for some of the staff, but really facilitated expression and cohesion. By the end of our meetings I really felt as though we were an equal group and that there was no disparity between YP and staff. The one thing that is really poignant in my memory is the word collaboration. I left feeling really hopeful that this collaboration was definitely the way forward and the thing that was going to make this strategy authentic and meaningful. It would be a pretty hypocritical participation strategy if it was written without any participation from the Young People!

Now the strategy is written, the next step is to work together to make this strategy come alive, be truly meaningful and become more than words on paper. How do we communicate to YP what they can expect from good health care and what ‘good’ looks like in practice? The challenge now is how CCHP make the strategy really mean something to children, young people and their families.

As a group of Young People, we have some ideas about what we would like to do next. YP cannot hold staff to account when they have no idea of what they should be expecting in terms of good participation. We want to work on translating the strategy in to something that is accessible to all young people, their families and carers. We hope that there might be some scope to work with a graphic designer to produce a poster and leaflets that can be distributed around waiting rooms. We are also looking into the possibility of producing a film.

When good participation happens, both parties learn and gain from each other in equal measure. I’ve learnt new skills, regained the confidence and purpose that my mental illness had unceremoniously stolen and gained voluntary experience that has helped in applying for jobs and university. This work has revealed my passions and convictions, allowing me to carve out some direction in my life.

I would hope that the professionals have learnt something from us too!

As well as the strategy, another young person and I worked with Barnardo’s to produce a film of our participation journey. The past few years of our lives have been quite a difficult journey. We both agree that a big part of the progress we have made can be attributed to the participation we have been involved in. We made the film to convey the impact and difference good participation makes to individuals on a more personal level. For me, making this film was kind of like a closing chapter as I try and make the leap from having the identity of a service user to that of a recovered student/professional with lived experience. I’ve been inspired to choose a career in the NHS from the work I have seen and done in CCHP. Our film tells the story of participation, recovery and friendship:

In May the CCHP had a visit from Kath Evans, National Head of Patient Experience for Children and Young People. We were delighted to be able to present the Participation Strategy and our film to her. I don’t think I have ever met someone so enthusiastic and passionate about championing the voice of Young People. It is very reassuring to know that people like her are in charge and such a privilege to share the work we’ve been doing with her. We have even been invited to show our film at an event in London in a few months time.
I truly owe a lot of my recovery from mental health problems to the things I’ve been involved in with CCHP. It’s really exciting to see the progress we’ve already made and I can’t wait to see what the future holds.

Felicity Hathway

NIHR strategic plan: ‘promoting a research active nation’ for children and young people

Yesterday the National Institute for Health Research (NIHR) published a new five year strategic plan ‘Promoting a research active nation’ setting out a new programme to encourage public engagement and participation in health, social care and public health research.

Simon Denegri, Chair of INVOLVE and NIHR National Director for Public Participation and Engagement in Research, has written a great post on this. Although the strategy applies to children and young people as well as adults it’s great to see involvement being given some specific mentions, given the increasing interest in this area (see my last post):

  • In relation to improving patient recruitment
  • Working with young people to help design and develop a range of research ‘apps’ that will help enthuse young people about research and encourage their participation in research studies
  • Publishing exemplars of how public involvement has improved patient access to research for children and young people

Involving children and young people in research – next steps

Following the events organised by People and Research West of England on involving children and young people in health and social care research, I’ve created a new page with information and resources as it seems to be an area in which there is growing interest. One of the issues emerging in my recent conversations on this subject has been the relative lack of published information and ‘evidence’ (in the researcher sense of peer-reviewed and critically reflective accounts) on public involvement with children and young people. So hopefully this page will be a start and additions and comments are of course very welcome!

I also recently gave a presentation a couple of weeks ago at INVOLVE‘s annual symposium for advisory group members, along with Jenny Preston, from the NIHR Clinical Research Network (Children).  Jenny and I were invited to start a discussion on ‘involving and engaging young people in research’ and my presentation gave an overview of some of the issues, opportunities and challenges from my experience and discussions at the PRWE fora:

Jenny then followed with a presentation she and colleagues at the NIHR Clinical Research Network (formerly Medicines for Children Research Network) are doing with their young people’s advisory groups. This included highlighting plans to continue the Generation R work they started last year (see films and report).

 In the discussions which followed there was a real sense of buzz and momentum around CYP’s involvement in research, both in its own right and as something that could information public involvement in research more widely. More developments to follow – watch this space…