TY - JOUR
T1 - Women’s Perceptions of Journeying Toward an Unknown Future With Breast Cancer
T2 - The “Lives at Risk Study”
AU - Rapport, Frances
AU - Khanom, Ashrafunnesa
AU - Doel, Marcus A.
AU - Hutchings, Hayley A.
AU - Bierbaum, Mia
AU - Hogden, Anne
AU - Shih, Patti
AU - Braithwaite, Jeffrey
AU - Clement, Clare
PY - 2018/1/1
Y1 - 2018/1/1
N2 - 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.
AB - 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.
KW - breast cancer
KW - journeying
KW - multi-stage qualitative methods
KW - psychosocial aspects
KW - risk
KW - UK
KW - Wales
UR - http://www.scopus.com/inward/record.url?scp=85036507036&partnerID=8YFLogxK
U2 - 10.1177/1049732317730569
DO - 10.1177/1049732317730569
M3 - Article (Academic Journal)
C2 - 28938853
AN - SCOPUS:85036507036
VL - 28
SP - 30
EP - 46
JO - Qualitative Health Research
JF - Qualitative Health Research
SN - 1049-7323
IS - 1
ER -