The Lived Experience of Women who have Hereditary Angioedema: An Exploratory Study.

Philippa Adams, Stephanie Kilinc

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Abstract

Hereditary Angioedema (HAE) is more prevalent in women than men (Bouillet, 2010) and can have a negative impact upon quality of life (QOL) (Gomide, et al., 2013), yet there is a paucity of qualitative research examining the lived experience of HAE. This study aimed to explore women’s experiences of living with HAE using a qualitative design. Ten women with HAE, recruited through HAE UK, shared their lived experience through completing written, online accounts. Three themes were identified through descriptive phenomenological analysis. The first highlighted how a lack of awareness of HAE from medical professionals impedes diagnosis and treatment. The second theme revealed how women with HAE strove to experience control over their lives, whilst the third highlighted how medication was key to them regaining a sense of control over their lives. The psychosocial impact of HAE requires further research attention to develop effective support mechanisms for women with HAE. Awareness of HAE amongst health professionals requires improvement and women with HAE would benefit from support from Health Psychologists to manage the psychosocial impact of the condition on their lives.
Original languageEnglish
Pages (from-to)23-31
JournalHealth Psychology Update
Volume28
Issue number1
Publication statusPublished - 28 Feb 2019

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