Experiences of youth and caregivers waiting for mental health services in the UK: a qualitative study to inform policy and practice

Long waitlists are the most commonly reported barrier to accessing mental health services in the UK and across Europe. Yet, we have almost no understanding of the lived experiences of waiting among youth and their caregivers. In this qualitative study, we conducted semi-structured interviews with a purposive sample of 20 youth (aged 11-17) and 15 caregivers from ten child and adolescent mental health services (CAMHS) sites geographically spread across England. We used reflexive thematic analysis to analyse the data. We generated four themes that characterised participants' experiences of waiting: (1) decline in mental and physical health, (2) strain on family dynamics and wider relationships, (3) unclear processes and communication, and (4) perceived mismatch between need and support. We also generated four themes illustrating participants' coping strategies while waiting: (1) using self-help and parenting resources, (2) engaging in hobbies, (3) relying on social support, and (4) seeking alternative services. There is an urgent need to shorten CAMHS wait times as our findings show the adverse impact of waiting on youth and their families, with mental health worsening not just due to time passing but as a direct result of being put on a waitlist. While youth on CAMHS waitlists make active efforts to manage their symptoms, limitations to these coping strategies suggest that improved information sharing and tailored interim support is needed to mitigate against mental health deterioration while waiting.