Periodic Reporting for period 1 - PAEDS (Prevalence and Experience of Diagnostic Shifts in Youth Mental Healthcare)
Período documentado: 2017-09-01 hasta 2019-08-31
Qualitative interviews were conducted with children and parents who had experienced diagnostic shifts, to establish the narratives through which they mase sense of these changes and the social, emotional and pragmatic implications for young people's lives. Families with personal experience of diagnostic shifts were recruited through voluntary organisations and support groups. A series of narrative interviews were completed with young people (n=13) and parents (n=21). Thematic analysis of the interview data established a range of positive and negative repercussions that diagnostic shifts may have. Clinical implications included the introduction of new treatment options, improved engagement with therapy and disillusionment due to previous missed or mis-diagnoses. Emotional implications included challenges to the self-concept, relief at improved self-understanding, the revision of expectations for the young person’s future, and regret of ‘lost time’ before the ‘correct’ diagnosis was identified. Social implications included the loss/gain of diagnosis-related social identities and evolution of the parent-child relationship. Practical implications included the loss/gain of educational resources and possible change of service-providers. The research contributes to our understanding of how the poor reliability of psychiatric diagnosis plays out in real-world clinical practice and in the social and emotional worlds of service-users. A paper reporting the results of this analysis is currently in preparation.
In addition to the project's two main studies, the Fellow was involved in a number of additional studies relevant to the PAEDS goals. A systematic literature review was conducted of the existing qualitative evidence regarding how psychiatric diagnoses affect young people's sense of self and social identity (O'Connor, Kadianaki, Maunder & McNicholas, 2018). Another study used data from a national longitudinal study of Irish children (n=8568) to examine the sociodemographic, clinical and psychological variables that differentiate children with high hyperactivity/inattention symptoms, who had and had not received a diagnosis of ADHD (O'Connor & McNicholas, 2019).
Results were used to develop clinical resources to aid in communication and understanding of diagnostic shifts.
The most important implications of diagnostic transitions relate to the wellbeing of the young service-users involved. Prior to PAEDS, no research had explored how diagnostic transitions are communicated to young people and their families or the social, emotional or pragmatic effects they may have. The PAEDS qualitative study represents the first study of how diagnostic shifts can affect the lives of young service-users. Results reveal the multifaceted implications diagnostic shifts can have for young people and their families. Publication of the research will raise awareness among mental health practitioners of the challenges diagnostic changes may entail for vulnerable young people, and encourage sensitive diagnostic decision-making that balances the clinical rationale for diagnostic revisions against their possible emotional and pragmatic costs.
The PAEDS findings were used to develop evidence-based resources (leaflets and videos) for parents, young people and health professionals that raise awareness of and provide advice on managing diagnostic shifts. To maximise their impact, these have been made freely available at https://paedsdiagnosis.ucd.ie/.