Lived Experiences of Diagnostic Shifts in Child and Adolescent Mental Health Contexts: a Qualitative Interview Study with Young People and Parents

Psychiatric diagnoses are important resources in helping young people and families make sense of emotional or behavioural difficulties. However, the poor reliability of diagnoses in childhood means many young service-users experience their diagnosis being removed, revised or supplemented over time. No previous research has investigated how young service-users experience, understand or respond to alteration of their original diagnosis. The current study adopted a qualitative approach to explore the lived experience of diagnostic shifts in youth mental health contexts. Narrative interviews were conducted with families living in Ireland, who had direct experience of diagnostic shifts. Participants included 21 parents (19 female) and 14 young people (8 female, mean age = 14). Thematic analysis explored the range of interpretations and implications of diagnostic shifts in families’ lives, identifying three themes that underpinned participants’ narratives. Diverse Trajectories & Experiences outlined the variety of contexts for diagnostic shifts, ways they were communicated to parents and young people, and their clinical consequences. A Process of Readjustment captured processes of emotional and conceptual adaptation that followed a diagnostic shift. Finally, Social Repositioning explored how diagnostic shifts could prompt changes to interpersonal relations, social identity and stigma experiences. The study shows that diagnostic shifts carry significant emotional, social and practical repercussions. While diagnostic shifts may threaten the therapeutic relationship and service-user understanding, they also offer opportunities to enhance young people’s self-concept, social relationships and therapeutic engagement. Clinician awareness of the socio-emotional implications of diagnostic shifts is vital to inform sensitive communication and support strategies.