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Intuition versus cognition: a qualitative exploration of how women understand and manage their increased breast cancer risk

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Abstract

Risk comprehension in individuals at increased familial risk of cancer is suboptimal and little is known about how risk is understood and managed by at-risk individuals who do not undergo genetic testing. We qualitatively studied these issues in 36 unaffected women from high-risk breast cancer families, including both women who had and had not undergone genetic testing. Data were collected through semi-structured interviews and data analysis was guided by Grounded Theory. Risk comprehension and risk management were largely influenced by the individual’s experience of coming from a high-risk family, with both tested and untested women relying heavily on their intuition. Although women’s cognitive understanding of their risk appeared generally accurate, this objective risk information was considered of secondary value. The findings could be used to guide the development and delivery of information about risk and risk management to genetically tested and untested individuals at increased risk of hereditary cancer.

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Acknowledgments

The authors are very grateful to the women who took part in the interviews. We would also like to thank Lisa Vaccaro and Belinda Rahman for their feedback on the interview protocol. We wish to thank Heather Thorne, Eveline Niedermayr, all the kConFab research nurses and staff, the heads and staff of the Family Cancer Clinics, and the Clinical Follow Up Study (which has received funding from the NHMRC, the National Breast Cancer Foundation, Cancer Australia, and the National Institute of Health (USA)) for their contributions to this resource, and the many families who contribute to kConFab. kConFab is supported by a grant from the National Breast Cancer Foundation, and previously by the National Health and Medical Research Council (NHMRC), the Queensland Cancer Fund, the Cancer Councils of New South Wales, Victoria, Tasmania and South Australia, and the Cancer Foundation of Western Australia. The kConFab Psychosocial study was funded by National Health and Medical Research Council (Project Grants 153824, 301930, 457316). Prof Phyllis Butow receives a senior principal research fellowship from the NHMRC.

Conflict of interest

Louise Heiniger, Phyllis N. Butow, Margaret Charles, Melanie A. Price declare that they have no conflict of interest.

Human and Animal Rights and Informed Consent

All procedures followed were in accordance with ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.

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Authors and Affiliations

  1. Centre for Medical Psychology and Evidence-Based Decision-Making, School of Psychology, The University of Sydney, Sydney, NSW, Australia

    Louise Heiniger, Phyllis N. Butow, Margaret Charles & Melanie A. Price

  2. Psycho-Oncology Cooperative Research Group (PoCoG), The University of Sydney, Level 6 North, Chris O’Brien Lifehouse (C39Z), Sydney, NSW, 2006, Australia

    Louise Heiniger, Phyllis N. Butow & Melanie A. Price

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  1. Louise Heiniger
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  2. Phyllis N. Butow
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kConFab Psychosocial Group on behalf of the kConFab Investigators

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Correspondence to Louise Heiniger.

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kConFab Psychosocial Group on behalf of the kConFab Investigators. The members of the “kConFab Psychosocial Group on behalf of the kConFab Investigators” are listed in the “Appendix”.

Appendix

Appendix

The kConFab Psychosocial Group includes the following in addition to the authors listed in the author group: B Bennett, B Meiser and K Tucker, Department of Medical Oncology, Prince of Wales Hospital, Randwick, Australia. S-A McLachlan Department of Oncology and Department of Medicine, St Vincent’s Hospital, Melbourne, Australia; K-A Phillips, Division of Cancer Medicine, Peter MacCallum Cancer Centre, Melbourne, Australia; Department of Medicine, St Vincent’s Hospital, The University of Melbourne, Melbourne, Australia; Sir Peter MacCallum Department of Oncology, The University of Melbourne, Melbourne, Australia; School of Population and Global Health, The University of Melbourne, Melbourne, Australia; CC Tennant, Sydney Medical School (Northern), The University of Sydney, Sydney, Australia.

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Heiniger, L., Butow, P.N., Charles, M. et al. Intuition versus cognition: a qualitative exploration of how women understand and manage their increased breast cancer risk. J Behav Med 38, 727–739 (2015). https://doi.org/10.1007/s10865-015-9632-7

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