Experiences of young people and parents waiting for mental health services in the UK: a qualitative study to inform policy and practice

Background: Long waits for mental health services are known to increase symptom severity and decrease treatment engagement among children and young people (CYP). Yet, we have almost no understanding of the lived experiences of waiting among CYP and their parents/guardians (PG), and how to improve these experiences or reduce the negative impact of waiting. Aim: The aim of this study was to examine the experiences and coping strategies of CYP and PG waiting for child and adolescent mental health services (CAMHS) in England to inform policy and practice. Method: In this qualitative study, we conducted semi-structured interviews with a purposive sample of 20 CYP (aged 11-17) and 15 PG from CAMHS sites geographically spread across England. We used reflexive thematic analysis to analyse the data. Results: We identified 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 identified 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. Conclusions: There is an urgent need to shorten CAMHS wait times as our findings corroborate the adverse effects of waiting on CYP and their families, with mental health worsening not just due to time passing but as a direct result of being put on a waiting list. Additional evidence-informed recommendations include: (1) improving communication and information sharing to reduce anxiety and stress throughout the referral and waiting process, (2) providing immediate interim support to mitigate against mental health deterioration while waiting, and (3) tailoring care to CYP’s needs and preferences to improve treatment engagement and outcomes.