Drawing together the range and diversity of material included in this book is a challenge which highlights a key message: that one size or form of participation does not fit all. Traditional structures and processes of participation can, at times, be helpful but can potentially exclude some of the young people most likely to use health services and limit the potential for fundamental change. The range of different models and approaches to young people's participation in healthcare practice presented in this book highlight both how ‘traditional’ structures and approaches can be developed in ways that consider inclusion and diversity, and the potential for new approaches which do more to transfer power to young people.

This chapter concludes the book by drawing together the following themes and issues which emerged from the examples of practice discussed in Chapters 1 to 9, and the research which underpins this book (Brady, 2017):

• defining participation

• cultures of participation

• the changing landscape

• the need for flexibility

• a children's rights-based framework for embedding participation in practice

Defining ‘participation’

There is a lack of information on how participation is understood by those who work with children and young people in healthcare, or how these understandings may affect participation cultures and practice (Brady, 2017). The starting point for this book was the commonly held understanding of participation as ‘a process by which young people influence decisions which bring about change in themselves, their peers, the services they use and their communities’ (Participation Works, 2010, p 9). But while this definition implies a more active form of participation than just listening to children and young people's views, it does not imply a fundamental change in the relationships between young people and service providers (Davis, 2011). In NHS services, as elsewhere, it tends to be adults who do the asking, the listening and have the power to put into practice (or not) decisions which young people are involved in making (Brady et al, 2018). As Cairns et al argue in Chapter 8:

The United Nations Convention on the Rights of the Child (UN, 1989: UNCRC) states that all children have a right to the highest possible standards of both healthcare and to have a say in matters that affect them. Involving young people in the commissioning, development and delivery of health services is essential to ensure that these better reflect children and young people's priorities and concerns. There are disparities in who participates, the types of decisions they are involved in making and the extent to which participation is meaningful and effective for both young people and professionals (Davey, 2010; Percy-Smith, 2010). It is also important to consider the forms participation takes and the processes which facilitate that involvement, that is, what young people are involved in and how, and the impact that this has on both services and young people.

This book responds directly to these ideas. In so doing it presents a range of different models and approaches to participation in healthcare practice from the perspectives of people working in the NHS and voluntary sector, researchers and young people. This includes considering young people's participation in shared decision-making (Part I), participation in national projects and programmes (Part II), collaborative research with young people in NHS Trusts (Part III) and young people-led participation (Part IV). These examples present new insights into the realities, challenges and opportunities for young people's participation in healthcare while also providing a critical perspective on current approaches. In the concluding chapter (Chapter 10), a new approach to understanding young people's participation is put forward to inform future thinking and practice.

Young people: a note on terminology

‘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, p 4).

Introduction

The Community Children's Health Partnership (CCHP) was, at the time of the research project discussed in this chapter, a partnership between North Bristol National Health Service Trust (the NHS Trust) and the children's charity Barnardo’s. Working in close collaboration in service design, delivery and evaluation, the ambition was to provide equitable and integrated care with a focus on participation and the voices of children and young people (CYP) from the outset. Along with the health services provided by the NHS Trust CCHP included a dedicated participation service called HYPE (Helping Young People to Engage) delivered by Barnardo’s.

The CCHP was a case study for Louca-Mai's doctoral research on ‘embedding children and young people's participation in health services and research’ (Brady, 2017). The authors were involved in an action research project which sought to develop and embed participation across all CCHP services and identify learning to inform the development of CYP's participation in the development and delivery of health services. At the time Emily was the Barnardo's Participation Manager and had been involved as a key partner in the CCHP from the outset, and Felicity and Lizzy were involved through the HYPE project as young advisors. The project involved health professionals, young people and Barnardo's participation service working collaboratively to develop a strategy and framework to support children's participation in the organisation.

This chapter starts by outlining the background and methods used in the project, before exploring the lessons from this project for the involvement of CYP in health policy and services from both professional and young people's perspectives. We also consider events which took place after the completion of the project, when the CCHP was recommissioned and restructured, highlighting the risks of competitive tendering and NHS commissioning processes on the embedding of CYP's participation in health services. This chapter also draws on a previous publication by the authors (Brady et al, 2018).

The CCHP participation story

The CCHP was a partnership between the NHS Trust and Barnardo’s, contracted from 2009 to 2016 to deliver children's community health services in Bristol and South Gloucestershire. It employed over 800 staff in mental and physical health services including CAMHS (Child and Adolescent Mental Health Services), health visiting, school nursing, physiotherapy, speech and language therapy, occupational therapy, community paediatricians and seven specialist services, including an inpatient adolescent unit.

Introduction

There are two principal arguments for involving children and young people in research: a rights-based moral argument that it is the ‘right’ thing to do; and an impact, or evidence-based, argument that involvement has benefits for the children and young people participating, for research and for the services and policies which draw on this research evidence. As discussed in Chapter Two, the United Nations (UN) Convention on the Rights of the Child (UN, 1989) established international recognition that all children have a right to have a say in decisions that affect them. Children's rights and the changing views of the nature of childhood have been reflected, to some extent, in increasing interest in children's and young people's involvement in research (for example, Brady, 2017; Kellet, 2005; Powell and Smith, 2009) both as sources of data and the focus of this chapter, through their active involvement in the research process. In a General Comment on Article 12, children's right to have a say on matters which affect them (see Chapter Two) the UN Committee on the Rights of the Child (UNCRC) outlines how this right should be applied:

Involving those who are the focus of research has been found to have a positive impact on what is researched, how research is conducted and the impact of research findings on services and in the lives of those involved (Brett et al, 2014; Staley, 2009). Involvement should lead to research, and ultimately services, that better reflect young people's priorities and concerns (Brady et al, 2018b; Fleming and Boeck, 2012). In the past less attention has been paid to the experiences and impact of involving children and young people than to the involvement of adults in research (Bird et al, 2013), and this area is still developing (Parsons et al, 2018).