“It was quite a relief. To know that there was something, and I wasn’t just a bit you know, weird” - A qualitative study using interpretative phenomenological analysis to explore the lived experience of psychiatric diagnosis in young people, primary caregivers and diagnosing professionals
Introduction: Diagnostic systems used in mental health are useful in many respects, for example, in facilitating a better understanding of a mental health condition. However, there are issues with their reliability and validity, as well as a negative impact on the diagnosed individual. This is especially the case when a psychiatric diagnosis is used with young people. Nevertheless, there is a paucity of research which has focused on young people’s experience of receiving a psychiatric diagnosis. There are also limited studies looking at the perspectives of a caregiver when a psychiatric diagnosis is given to the young person in their care. Furthermore, research also needs to fully understand the professional's perspective when delivering a diagnosis to a young person. To explore the experience of psychiatric diagnosis in young people, caregivers and diagnosing professionals, this thesis will: 1) Conduct a systematic review of the existing literature related to the experience of psychiatric diagnosis in childhood 2) Develop a study methodology which seeks to further expand on this phenomenon, and interview young people, caregivers and diagnosing professionals to explore their perspectives 3) Detail the findings from the interviews using Interpretative Phenomenological Analysis (IPA), both within each group of participants and across participant groups 4) Discuss the findings in accordance with the wider literature 5) Evaluate the study design, considering the strengths and limitations of the chosen methodology 6) Provide recommendations for future research and implications for clinical practice Systematic Review: The systematic review of literature related to the experiences of young people in receiving a psychiatric diagnosis identified three themes: 1) diagnostic subjectivity, which considers the validity of diagnosis in young people, the alternatives to diagnosis and who has the power to make those decisions, 2) the utility of psychiatric diagnosis, which discusses the usefulness of diagnosis in understanding a condition and providing access to services and 3) stigma, which discusses the negative connotations of a psychiatric diagnosis. The systematic review identified a lack of research focused on young people’s and caregivers' experiences, and a focus on controversial diagnoses (e.g. borderline personality disorder), which suggested a need for further research to draw firm conclusions regarding young people’s experiences of psychiatric diagnosis. Methodology: This study poses the research question, ‘What are the experiences of psychiatric diagnosis in young people, primary caregivers, and diagnosing professionals?’ To answer this, a qualitative study using semi-structured interviews and analysed through interpretative phenomenological analysis was conducted with young people, primary caregivers and professionals to understand their unique experiences of this phenomenon. Findings: This study's findings are significant in suggesting that young people, caregivers, and professionals recognise similar benefits of diagnosis, although they differ in their views on whether a diagnosis should be provided. • Young people recognised the purpose of a diagnosis in validating their experiences, accessing support, and understanding their condition. They also identified the limits of a diagnosis, including that it doesn’t alleviate their symptoms and can perpetuate stigma. The young people discussed the challenges of the diagnostic process, reporting mixed views and experiences regarding the use of objective evidence and their involvement in the process. • For caregivers, many of the findings were echoed from the young person’s interviews. They recognised similar purposes of a diagnosis and identified many of the same limits of the label, although these were wider ranging for caregivers and included discussions about minimising the blame they felt. They also highlighted challenges in the diagnostic process and discussed their experience of services, which had not been identified in the young person interviews. • Professionals also recognised similar purposes of a diagnosis, and identified challenges of the diagnostic process, although these were slightly different to challenges raised by other groups. Whilst professionals clearly expressed a preference for objective measures, they also recognised that these were lacking and considered several organisational barriers to providing a diagnosis that were not discussed by other groups. Finally, the professional group explicitly discussed reasons not to give a diagnosis, citing stigma, queries around the validity of a diagnosis in adolescence, and the potential for a diagnosis to change as primary concerns. Fundamentally, there were many similarities in the diagnostic experiences of young people, caregivers, and professionals. Most significantly, all three groups find that psychiatric diagnosis aids understanding of the condition and promotes access to necessary support, while also recognising several challenges in the diagnostic process. However, the groups differed in their opinions on whether a diagnosis should be provided, with professionals most likely to raise concerns and avoid providing a diagnosis. Caregivers and young people were also likely to recognise concerns, but they maintained that a diagnosis is still more helpful than harmful. Discussion: The study findings across the three groups are widely supported by the literature. It suggests a preference for objective tests and diagnostic tools, although it indicates a lack of accurate testing in psychiatry. It also highlights how delays and inconsistencies in diagnosis often cause confusion for young people and their families, whereas timely, accurate diagnoses improve outcomes. Further research indicates that diagnosis helps with understanding, validation, and access to support, but satisfaction depends on being heard and symptom improvement. It also highlights young people's and caregivers' negative experiences with services and poor communication. Although the literature highlights many young people's and caregivers' concerns about being labelled, stereotyped, or misunderstood, arguments over whether a diagnosis remains valuable are inconsistent. The wider literature also identifies that whilst some professionals value diagnosis for understanding and accessing support, others are sceptical about its practical benefits and worry about overdiagnosis, unnecessary treatment, and stigma, particularly for certain conditions. Study Evaluation: This study is the first to examine the psychiatric diagnostic journey in children and adolescents from the perspectives of young people, caregivers, and professionals. While the methodology has several strengths, including reflexive practices, prioritising the young person’s voice, and including a vulnerable participant population that is often overlooked, it also has limitations. These include a small, English-speaking, localised sample and some inconsistencies in data collection. Final reflections, recommendations and conclusion: This study explores perspectives on psychiatric diagnosis among young people, caregivers, and professionals. All groups agree that diagnosis is helpful for understanding conditions and accessing support, but concerns remain about stigma, questionable diagnostic validity and over-medicalisation. The study highlights its unique contribution in examining these three groups' experiences together, provides recommendations for future research, and urges further investigation into how diagnoses are documented in UK health services.
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