How do women at increased risk of breast cancer make sense of their risk? An interpretative phenomenological analysis

Abstract

Objectives

Offering breast cancer risk prediction for all women of screening age is being considered globally. For women who have received a clinically derived estimate, risk appraisals are often inaccurate. This study aimed to gain an in-depth understanding of women's lived experiences of receiving an increased breast cancer risk.

Design

One-to-one semi-structured telephone interviews.

Methods

Eight women informed that they were at a 10-year above-average (moderate) or high risk in a breast cancer risk study (BC-Predict) were interviewed about their views on breast cancer, personal breast cancer risk and risk prevention. Interviews lasted between 40 and 70 min. Data were analysed using Interpretative Phenomenological Analysis.

Results

Four themes were generated: (i) encounters with breast cancer and perceived personal significance, where the nature of women's lived experiences of others with breast cancer impacted their views on the significance of the disease, (ii) ‘It's random really’: difficulty in seeking causal attributions, where women encountered contradictions and confusion in attributing causes to breast cancer, (iii) believing versus identifying with a clinically-derived breast cancer risk, where personal risk appraisals and expectations influenced women's ability to internalize their clinically derived risk and pursue preventative action and (iv) perceived utility of breast cancer risk notification, where women reflected on the usefulness of knowing their risk.

Conclusions

Providing (numerical) risk estimates appear to have little impact on stable yet internally contradictory beliefs about breast cancer risk. Given this, discussions with healthcare professionals are needed to help women form more accurate appraisals and make informed decisions.