Youth Perspectives on 'Highly Personalised and Measurement-Based Care': Qualitative Co-Design of Education Materials

Despite high levels of mental ill-health amongst young people (aged 15-30), this group demonstrates low help-seeking and high drop-out from mental health services (MHS). Whilst shared decision-making can assist people in receiving appropriate and effective health care, young people frequently report that they do not feel involved in treatment decisions. The current study focused on co-design of a clinical education and participant information programme for the Brain and Mind Centre Youth Model of Care. This model, which articulates a youth-focused form of highly personalised and measurement-based care, is designed to promote shared decision-making between young people and clinical service providers.

We conducted workshops with 24 young people (16-31; M_Age = 21.5) who had accessed mental health services. Participants were asked what advice they would give to young people entering services, before giving advice on existing materials. Workshops were conducted and transcripts were coded using thematic analysis by two lived experience researchers and a clinical researcher.

Young people found it empowering to be educated on transdiagnostic models of mental illness, namely clinical staging, which gives them a better understanding of why certain treatments may be inappropriate and ineffective, and thus reduce self-blame. Similarly, young people had limited knowledge of links between mental health and other life domains and found it helpful to be educated on multidisciplinary treatment options. Measurement-based care was seen as an important method of improving shared decision-making between young people and health professionals; however, to facilitate shared decision-making, young people also wanted better information on their rights in care and more support to share their expertise in their own needs, values and treatment preferences.

These findings will inform the delivery of the further development and implementation of a youth-specific clinical education and participant information programme for the BMC Youth Model.

Workshops were facilitated by researchers with lived expertise in mental ill-health (A.H. and/or C.G.) and a clinical researcher (who has expertise as an academic and a clinical psychologist). A.H. and C.G. were also involved in conceptualisation, analysis, interpretation, review and editing of this paper.