Experiences of acceptance among individuals with hereditary angioedema: a qualitative brief report

Burton, AE, Owen, A, Herron, D, Elliott, J ORCID: 0000-0003-2011-6476, Lindsay-Wiles, I and Diwakar, L (2026) Experiences of acceptance among individuals with hereditary angioedema: a qualitative brief report. Journal of Rare Diseases, 5 (1). ISSN 2731-085X

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Abstract

Purpose: Hereditary Angioedema (HAE) is a rare genetic condition characterised by unpredictable swelling episodes that can affect almost any part of the body, with throat swellings posing a potentially life-threatening risk. Individuals with HAE commonly experience psychological difficulties, and unmanaged stress is known to increase the likelihood of attacks. As a result, psychological support may offer important benefits for this population. There is growing evidence that Acceptance and Commitment Therapy (ACT) can be an effective psychological intervention for people living with long-term health conditions. To consider the potential value of ACT-based interventions for HAE this brief report reviews data from a wider study exploring HAE life stories to examine how individuals with HAE experience acceptance.

Method: Data were collected through open-ended qualitative survey responses from 65 individuals living with HAE. In addition, 11 of these participants also completed in-depth photo-elicitation interviews.

Results: Many participants described how adopting an attitude of acceptance enabled them to engage more actively in life and supported their overall wellbeing. In contrast, some participants recounted times when struggling to accept their HAE led to heightened fear and anxiety, which they felt could trigger attacks and negatively affect their mental health.

Conclusions: The participants’ accounts illustrate examples of how accepting HAE diagnosis and its associated symptoms could support greater engagement in everyday life. These findings suggest that approaches aimed at fostering acceptance may offer a valuable means of enhancing psychological wellbeing in this population. The implications for developing acceptance-informed psychological interventions for individuals with HAE are discussed.

Item Type:	Article
Uncontrolled Keywords:	4203 Health Services and Systems; 42 Health Sciences; 52 Psychology; Health Disparities; Health Disparities and Racial or Ethnic Minority Health Research; Clinical Research; Behavioral and Social Science; Mental Health; 6.6 Psychological and behavioural; Mental health; 3 Good Health and Well Being
Subjects:	B Philosophy. Psychology. Religion > BF Psychology
Divisions:	Psychology (from Sep 2019)
Publisher:	Springer
Date of acceptance:	19 April 2026
Date of first compliant Open Access:	2 June 2026
Date Deposited:	02 Jun 2026 14:05
Last Modified:	02 Jun 2026 14:05
DOI or ID number:	10.1007/s44162-026-00192-4
URI:	https://researchonline.ljmu.ac.uk/id/eprint/28705

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