Women’s perceptions of journeying towards an unknown future with breast cancer

the “Lives at Risk Study"

Frances Rapport*, Ashrafunnesa Khanom, Marcus A. Doel, Hayley A. Hutchings, Mia Bierbaum, Anne Hogden, Patti Shih, Jeffrey Braithwaite, Clare Clement

*Corresponding author for this work

Research output: Contribution to journalArticle

5 Citations (Scopus)

Abstract

Breast cancer risk classifications are useful for prognosis, yet little is known of their effect on patients. This study clarified women’s understandings of risk as they “journeyed” through the health care system. Breast cancer patients and women undergoing genetic investigation were recruited (N = 25) from a large UK Health Board, 2014–2015, completing a “Book of Experience,” and Bio-photographic elicitation interviews. Stakeholder and Participant Feedback Forums were undertaken with key stakeholders, including patients, oncologists, funders, and policy developers, to inform team understanding. Thematic and visual frameworks from multidisciplinary analysis workshops uncovered two themes: “Subjective Understandings of Risk” and “Journeying Toward an Unknown Future.” Breast cancer patients and women undergoing investigation experienced risk intuitively. Statistical formulations were often perplexing, diverting attention away from concrete life-and-death facts. Following risk classification, care must be co-defined to reduce patients’ foreboding about an unknown future, taking into consideration personal risk management strategies and aspirations for a cancer-free future.

Original languageEnglish
Pages (from-to)30-46
Number of pages17
JournalQualitative Health Research
Volume28
Issue number1
Early online date22 Sep 2017
DOIs
Publication statusPublished - 1 Jan 2018

Keywords

  • breast cancer
  • psychosocial aspects
  • risk
  • journeying
  • multi-stage qualitative methods
  • Wales
  • UK

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