More than just characters in a story: effective and meaningful involvement of young people in mental health research

Abstract

Purpose The story of youth mental health remains poorly understood. To truly progress our understanding of youth mental health, we must shift our focus from one in which young people are the subjects, or “characters”, of research efforts to one in which they are active agents, or “authors”. This change in dynamic falls under the banner of public and patient involvement (PPI), a growing movement that emphasises the meaningful involvement of the public in health research. The paper aims to discuss these issues. Design/methodology/approach Here, the authors aim to stimulate this shift in focus by describing emerging practices of youth involvement in paediatric research and outlining how such practices can be extended to the domain of youth mental health. In particular, the authors highlight Young Persons’ Advisory Groups (YPAG), through which young people can be involved in an active, meaningful and mutually beneficial manner, at each step in the research life cycle. Findings A YPAG comprises young people who act as research partners, providing guidance on a range of activities. In the health domain, YPAGs have provided fresh perspectives, generated valuable knowledge and changed attitudes about youth involvement in research. Moreover, they provide young people with genuine opportunities to shape research so that it addresses issues they encounter in their everyday lives. Originality/value The establishment of youth mental health YPAGs will enhance the authors’ research questions, design, delivery and impact. The authors outline how researchers can embrace PPI and work together with young people to tell a different story of youth mental health.

“Understanding my story”: young person involvement in formulation

“…Involving children and young people in decision-making, service development and evaluation are also key components of ensuring the voice of young people is central in our minds. It also supports empowering the young people we work with (Allan et al, 2017;MacSweeney et al, 2019).…”

“…Exploring whether formulation can help improve outcomes represents a key area of research in the future. Co-production and qualitative methodologies whereby young people are meaningfully involved in the development of research proposals would further advance this domain (Macsweeney et al, 2019). Young people and their journey should always be at the heart of what we do.…”

Developing young people’s mental health awareness through education and sport: Insights from the Tackling the Blues programme

“…Embedding Emoji Bingo and other learning activities described here into the content, organisation and delivery of school curricula may, thus, help foster the development of positive, supportive classroom climates which are unthreatening and seen as conducive to maximising pupils’ sense of enjoyment, participation and achievement, which are important for mental health (Røset, 2019; Røset et al, 2020). Providing pupils with learning opportunities in whole-school approaches to mental health which enable them to feel comfortable expressing their emotions, and to exercise greater choice over how this is done using personally and socially relevant tools (such as emojis), would appear important for enhancing pupils’ knowledge and awareness of mental health, and developing SEL (Clarke et al, 2015; MacSweeney et al, 2019; O’Connor et al, 2018; O’Reilly et al, 2018). This, in turn, is important because social and behavioural problems in early childhood typically include difficulties in regulating emotions, with an internalising and stigmatising of these behaviours potentially leading to poorer mental health and mental illness (e.g.…”

“…Rather less attention has been paid to the views and experiences of the pupils involved in those programmes, and it has been claimed that more qualitative work ‘needs to include the “child’s voice”, to be child-centred and respect children’s rights’ (O’Reilly et al, 2018: 659), including through the methods and activities used (Mannay, 2016; Mannay et al, 2019). Including the voices of CYP is regarded as essential for the co-development of (school-based) mental health programmes and for maximising their potential effectiveness (Clarke et al, 2015; MacSweeney et al, 2019; O’Reilly et al, 2018), and also because it helps provide greater insight into pupils’ lived experiences than standardised measures often used in experimental designs.…”

Who am ‘I’: Reauthoring self, stories and subjectivity in research with children

“…Yet the value placed on assigning self to the 'I' of the narrative can disempower children. As MacSweeney et al (2018) recognise, 'a change in the nature of this focus is required-from one in which young people are the subjects or characters of research efforts to one which they are active agents or authors ' (MacSweeney Et al, 2019). Children can only start to author and reauthor their stories when they can see that they are not their stories.…”