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A Thesis of Clinical Research and Practice: Part A: Using an Acceptance and Commitment Approach to Understand and Support Adults with Hereditary Angioedema: A Theoretical Review; Part B: An Online Acceptance and Commitment Therapy Intervention for Adults with Hereditary Angioedema: A Feasibility Study; Part C: Summary of Clinical Practice and Assessments
Doctoral Thesis   Open access

A Thesis of Clinical Research and Practice: Part A: Using an Acceptance and Commitment Approach to Understand and Support Adults with Hereditary Angioedema: A Theoretical Review; Part B: An Online Acceptance and Commitment Therapy Intervention for Adults with Hereditary Angioedema: A Feasibility Study; Part C: Summary of Clinical Practice and Assessments

Rachel Mcgranaghan
University of Surrey
Doctor of Psychology (PsychD), University of Surrey
30/09/2026
DOI:
https://doi.org/10.15126/thesis.902180

Abstract

Hereditary Angioedema Acceptance and Commitment Therapy Psychological Flexibility Chronic Illness Rare Diseases Values-based Intervention Psychosocial Support

This thesis examines the psychological needs of adults living with Hereditary Angioedema (HAE) and explores the potential role of integrating an Acceptance and Commitment Therapy (ACT) framework to improve holistic care for this population. Part one of this portfolio presents a theoretical review that synthesises existing literature on the clinical characteristics and psychosocial impact of HAE, highlighting the limitations of a predominantly biomedical model in addressing the emotional, social, and functional challenges associated with the condition. The review argues that ACT’s model of psychological flexibility offers a valuable framework for understanding the lived experience of HAE, particularly in relation to uncertainty, fear of future attacks, and the disruption to valued life activities. It concludes that integrating ACT-informed psychological support into routine care may enhance prevention and early intervention for emerging psychological difficulties.

Part two presents an empirical feasibility study evaluating a four-week self-directed online ACT intervention designed for adults with HAE. The study assessed acceptability, feasibility, and preliminary outcomes using a mixed-methods design. Recruitment and retention challenges, alongside limited reliable change across quantitative measures, indicated that the current format of the intervention was not yet feasible for this population. However, qualitative feedback suggested that participants valued the therapeutic content and recognised its relevance to managing the psychological burden of HAE. These findings point to the need for adaptations to delivery, including greater support, increased flexibility, and more personalised engagement strategies.

Together, the two papers highlight the psychological complexity of living with HAE and the potential value of ACT-informed approaches in addressing unmet emotional and behavioural needs. The portfolio concludes that future work should focus on developing more accessible, supported, and contextually sensitive ACT interventions to enhance the holistic care available to adults living with HAE.

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