Patient and public involvement in health research is important to ensure that research remains relevant to the patient groups it intends to benefit. The UK NIHR funded Blueprint study aimed to develop a ‘model’ of effective service design for children and young people with common mental health problems. To ensure Blueprint’s findings were rooted in lived experience and informed by different perspectives, six young adults with lived experience of mental health issues were recruited, trained and employed as co-researchers to work alongside academic researchers
. Blueprint collaborated with a third sector partner (McPin) to recruit, employ and mentor the co-researchers and deliver a bespoke training and mentoring package to support their development. Since Blueprint’s scheduled work plan was significantly impacted by the Covid-19 pandemic, planned co-researcher activities had to be adapted to accommodate distance learning and remote fieldwork and analysis. Blueprint’s co-researchers, academic researchers and a representative of McPin collaboratively used a process of reflexivity and thematic analysis to capture Blueprint’s involvement journey. We identified numerous benefits but also challenges to involvement, some of which were exacerbated by the pandemic. Navigating and overcoming these challenges also allowed us to collectively identify key guidelines for involvement for the wider research community which focus on enabling access to involvement, supporting co-researchers and optimising involvement for the benefit of co-researchers and research teams. This paper presents an overview of the Blueprint involvement journey from co-researcher, academic researcher and McPin perspectives, sharing our learning from the recruitment, training, fieldwork and analysis phases in order to inform the knowledge base on lived experience involvement and provide guidance to other researchers who seek to emulate this approach.
When young people seek support from mental health care practitioners, the encounters may affect the young people’s sense of self, and in particular undermine their sense of agency. For this study, an interdisciplinary team of academics and young people collaboratively analysed video-recorded encounters between young people and mental healthcare practitioners in emergency services. They identified five communication techniques that practitioners can use to avoid undermining the young person’s sense of agency in the clinical encounter. They conceptualise the use of those techniques as the adoption of an agential stance towards the young person. The agential stance consists of: (a) validating the young person’s experiences, (b) legitimising the young person’s choice to seek help, (c) refraining from objectifying the young person, (d) affirming the young person’s capacity to contribute to positive change, and (e) involving the young person in the decision-making process.
Introduction
It is increasingly accepted that young people need to be centrally involved in research on issues that affect them. The aim of this study was to explore young people's perceptions of the benefits for them of being involved in mental health research and the processes that enabled these benefits.
Methods
Qualitative interviews were conducted by co‐researchers (young people with lived experience and/or interest in mental health) with 13 young people (aged 13–24 years) who had experience of being involved in mental health research when they were between 11 and 16 years of age. Reflective thematic analysis was used to identify important aspects of young people's experiences.
Results
Four main themes were identified: (1) opportunity to have a meaningful impact, (2) opportunity to be part of a supportive community, (3) opportunity to learn and grow and (4) increasing opportunities for young people.
Conclusion
This study highlights young people's experiences of being involved in mental health research and identifies ways in which researchers can ensure that involvement opportunities bring benefits to both the young people and the research.
Patient or Public Contribution
This research was a response to issues raised by young people involved in research. The project was supported by co‐researchers throughout, including design, data collection, analysis and write‐up.
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