Living in the shadow of Lynch Syndrome: British women’s accounts

Abstract

In this paper we explore accounts of eight British women living with Lynch Syndrome: a hereditary syndrome that increases the risk of developing bowel and gynecological cancers. We collected data via semi-structured interviews and analyzed them using Interpretative Phenomenological Analysis. Two themes, ‘It’s Up to Us’: The Lynch Patient Experience; and ‘The Biggest Challenge’: The Lynch Parent Experience, illustrate the experiential burden and emotional labor of living with Lynch Syndrome. We theorize our analysis through Corbin and Strauss’s concept of ‘Health Work’, and Hochschild’s concept of ‘Emotion Work’. Recommendations for clinical care and familial support are discussed.

Funding

The author(s) reported there is no funding associated with the work featured in this article.