"Until you get the diagnosis you’re forever in limbo” – arents’ 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 18-24 months on a CAMHS waitlist with 10% waiting more than two years. Reflexive thematic analysis was used to analyse data.

Results: at point of 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 signposting and support from services concerning the assessment process. This may help alleviate some of the stressors associated with their child’s assessment journey, such as feeling responsible for their child’s difficulties and the burden of supporting their educational needs.
Patient and Public Contribution: This study was nested within the OPTIMA trial where PPI panel members provided ongoing support into various aspects of the study, including advising on participant communication, study design and data analysis. All PPI members have lived experience of having a neurodivergent child. For this study the PPI co-produced the interview schedule and took part in transcript analysis using a thematic framework approach. To acknowledge their contributions, members of the PPI panel are included as co-authors.

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Identifiers

ORCID for Ellen Hedstrom: orcid.org/0000-0002-2952-4612

ORCID for Jana Kreppner: orcid.org/0000-0003-3527-9083

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