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

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.