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.
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.
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!
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