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“Sometimes it can be really hard for people to understand”: exploring clinical features and lived experiences of Paediatric Functional Neurological Disorder
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Date
2026-05-05
Authors
Barrett, Elizabeth
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Publisher
University College Cork
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Abstract
Objective: Paediatric Functional Neurological Disorder (FND) is a complex and heterogeneous condition associated with significant disruption to young people and their families. This thesis aimed to develop a broader understanding of paediatric FND within an Irish tertiary hospital setting by examining both clinically documented presentations and lived experiences. Study 1 aimed to characterise the clinical and psychosocial profile of paediatric patients with FND and explore how findings could be organised using a 5 P’s formulation framework. Study 2 aimed to explore the lived experiences of adolescents with FND and their parents, with attention to diagnostic understanding, healthcare experiences, and the impact of FND on daily and family life.
Methods: Study 1 used an exploratory retrospective file review of 33 paediatric patients aged 0-18 years with a documented diagnosis of FND. Data were extracted from paper and electronic medical records using a structured data extraction tool. Descriptive statistics were used to summarise demographic and clinical characteristics, while quantitative content analysis was applied to protective factors. Findings were organised within a 5 P’s formulation framework. Study 2 used Multi-perspectival Interpretative Phenomenological Analysis (MIPA). Four adolescents aged 13–17 years with FND and six parents were recruited through a tertiary paediatric service. Semi-structured interviews were conducted separately with adolescents and parents and analysed idiographically before examining convergence and divergence across perspectives.
Results: Study 1 identified a heterogeneous clinical profile. Functional motor symptoms and functional seizures were the most common presentations, and over one-third of patients presented with multiple FND symptom types. High rates of co-occurring medical conditions, somatic symptoms, mental health difficulties, and neurodevelopmental diagnoses or queries were documented. Stressful life events and previous illness or injury were commonly recorded as precipitating factors, while perpetuating factors were less consistently documented. Protective factors were identified across individual, family, and social domains, including parental support, engagement in activities, peer relationships, and treatment engagement. Study 2 identified seven Group Experiential Themes (GETs) across adolescent and parent accounts. Adolescents described trying to understand an unclear diagnosis, feeling dismissed or unsupported, and experiencing disruption to school, peer relationships, and independence. Parents described distress, uncertainty, advocacy, hypervigilance, and adaptations to family life and parenting roles. Across both groups, shared experiences included diagnostic uncertainty, feeling dismissed within healthcare encounters, and disruption to everyday life, although these were experienced differently by adolescents and parents.
Conclusions: Together, the findings demonstrate that paediatric FND is best understood as a complex biopsychosocial condition involving interacting clinical, developmental, emotional, family, and social factors. Study 1 highlights the value of organising heterogeneous clinical information within a structured biopsychosocial formulation framework, while also identifying gaps in the documentation of perpetuating and protective factors. Study 2 adds depth by showing how FND is experienced and negotiated within everyday and family life. Overall, the thesis highlights the importance of clear diagnostic communication, validation of symptoms, collaborative formulation, and family-focused, multidisciplinary care. Future research should further examine perpetuating and protective factors, neurodevelopmental influences, longitudinal outcomes, and the impact of formulation-informed interventions in paediatric FND.
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Keywords
Functional Neurological Disorder
Citation
Barrett, E. 2026. “Sometimes it can be really hard for people to understand”: exploring clinical features and lived experiences of Paediatric Functional Neurological Disorder. DClinPsych Thesis, University College Cork.