The power and impact of qualitative methods: A case study on Hereditary Angioedema

Hereditary Angioedema (HAE) is a rare genetic disorder causing recurrent swelling episodes, with approximately 2% affecting the throat which can be life threatening. Despite its impact, little research has explored the psychological aspects of HAE. Qualitative methods are therefore well placed for enhancing understanding of this condition.
We have conducted several studies employing qualitative methods to explore Hereditary Angioedema. This includes an online survey of 65 people with HAE using open-ended life experience questions, photo-elicitation life story interviews with 11 HAE patients, in-depth semi-structured interviews focused on prophylaxis medication use with 14 HAE patients, and in-depth semi-structured interviews with 5 healthcare professionals about their experience of working with this patient group.
This talk reflects on the power that qualitative insight can have. Our work has informed national charity initiatives, secured funding for a trainee health psychologist dedicated to HAE research, and created educational opportunities for students and healthcare professionals. We have also produced educational and health behaviour change videos, developed recommendations for changes to emergency care practice and improved psychological support, and advocated for change through sharing our work with policy makers.
The voices of participants with rare disease deserve to be heard and the use of these voices is a powerful tool for impact. This talk highlights some of the ways we have woven these voices into are ongoing work with the charity HAE UK and used them as a catalyst for change to improve the lives of patients.