Aims and objectives: To systematically identify and synthesise the experiences reported by women with a breast cancer mutation who do not have cancer as reported in qualitative research published between 2013 and 2020.
Background: Women carrying a BReast CAncer (BRC) genetic mutation have an increased risk for breast and ovarian cancer. They must engage in emotional decision-making regarding risk management strategies to prevent cancer, including risk-reducing bilateral mastectomy and bilateral salpingo-oophorectomy.
Design and methods: The ENTREQ statement guided this review. Eight databases were systematically searched (CINAHL, Pubmed, Embase, Psychinfo [Ovid], Web of Science, Scopus, Proquest and Lenus). Synthesis was guided by "best fit" framework. The Critical Appraisal Skills Programme guided assessment of methodological limitations and confidence in the review findings was informed by GRADE-CERQual.
Results: Twenty studies met the inclusion criteria for synthesis. Six themes were synthesised from the included studies (anxiety; family planning; it's a family affair; empowerment; actions; pragmatic adjustments).
Conclusions: The multidimensional experiences of women living with a BRCA1/2 mutation require an individualised response based on women's needs at their life stages. A decision coaching model adopted during consultations could support women to guide decision-making regarding cancer risk-reducing strategies.
Keywords: BRCA; cancer; decision-making; qualitative; qualitative evidence synthesis; review.
© 2022 John Wiley & Sons Ltd.