Barry Percy-Smith

Disabled children’s childhood studies and leadership as experts by experience: learning activism in health and social care education

People involved in disabled children’s childhood studies, and others who contribute their experience of using health and social care services, strongly object to being seen by professionals as ‘the problem’. In contrast Experts by Experience involved in a leadership project used strategies of mutual support towards change. We see learning activism as core to a professional practice that is also about change and explore critical pedagogy for students to directly experience such collaborative ways of working. The chapter begins and ends with reflections by the authors on sharing their personal and political concerns as part of collaborative learning encouraged by the opportunities to join and support the voices of disabled children and their families.

Participation as Learning for Change in Everyday Spaces: Enhancing Meaning and Effectiveness Using Action Research

In spite of advances in the theory and practice of participation, emphasis continues to be placed on hearing children’s views and experiences rather than more active roles in all stages of the project cycle. In particular, comparatively little attention is paid to the importance of learning in participatory processes. In addition, attention is broadening beyond formal decision-making contexts to focus on the ways in which young people participate in everyday life contexts, bringing to the fore the importance of process and of social learning in everyday relationships as young people reflexively engage with others as equal and active citizens. This chapter draws on recent research to elaborate a case for understanding participation as a process of learning for change, drawing on principles of action research.

Involving young people in drug and alcohol research

Purpose Young people’s involvement should lead to research, and ultimately services, that better reflect young people’s priorities and concerns. Young people with a history of treatment for alcohol and/or drug problems were actively involved in the youth social behaviour and network therapy study. The purpose of this paper is to explore the impact of that involvement on the study and what was learnt about involving young people in drug and alcohol research. Design/methodology/approach The initial plan was to form a young people’s advisory group (YPAG), but when this proved problematic the study explored alternative approaches in collaboration with researchers and young people. Input from 17 young people informed all key elements of the study. Findings Involvement of young people needs to be dynamic and flexible, with sensitivity to their personal experiences. Engagement with services was crucial both in recruiting young people and supporting their ongoing engagement. This research identified a need to critically reflect on the extent to which rhetorics of participation and involvement give rise to effective and meaningful involvement for young service users. It also highlights the need for researchers to be more flexible in response to young people’s personal circumstances, particularly when those young people are “less frequently heard”. Research limitations/implications This research highlights the need for researchers to be more flexible in response to young people’s personal circumstances, particularly when those young people are “less frequently heard”. It highlights the danger of young people in drug and alcohol research being unintentionally disaffected from involvement through conventional approaches and instead suggests ways in which young people could be involved in influencing if and how they participate in research. Practical implications There is an apparent contradiction between dominant discourses and cultures of health services research (including patient and public involvement) that often do not sit easily with ideas of co-production and young people-centred involvement. This paper provides an alternative approach to involvement of young people that can help to enable more meaningful and effective involvement. Originality/value The flexible and young people-centred model for involvement which emerged from this work provides a template for a different approach. This may be particularly useful for those who find current practice, such as YPAG, inaccessible.