'Until You Get the Diagnosis You're Forever in Limbo'-Parents' Experiences of Waiting for an Attention-Deficit/Hyperactivity Disorder Assessment With Child and Adolescent Mental Health Services
Abstract
Background: Parents in the United Kingdom seeking an assessment for attention-deficit/hyperactivity disorder (ADHD) for their child experience a significant wait before receiving an appointment with Child and Adolescent Mental Health Services (CAMHS), yet little has been written on how parents experience this period. Through qualitative interviews, we sought to understand how the period of waiting from being accepted onto a service waitlist and receiving a diagnostic assessment impacts parents and their children.
Method: The study was nested within a large randomised controlled trial. We conducted semi-structured interviews with 41 parents of children aged 5-11 years. 30% of parents had waited between 18 and 24 months on a CAMHS waitlist, with 10% waiting more than 2 years. Reflexive thematic analysis was used to analyse data.
Results: At the point of the interview, around 50% of children were still waiting for an initial assessment. Six themes reflecting parents' uncertainty around the assessment process, lack of communication from services, the importance of receiving a diagnosis, difficulty accessing support and the negative impact of waiting on mental health and education, as well as recommendations to improve communication between services and families, emerged.
Conclusion: Parents recognised the pressures on services to offer timely support; however, their well-being could be substantially improved by more clarity around wait times, as well as more effective…
How strong is the evidence?
Evidence Hub reads this as a randomized trial, done in people. Its evidence level is 2 of 5 (High · randomized trial). Randomized trials of a reasonable size are the strongest single-study design. Reported size: 41 participants or records.
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