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Author Affiliations: Women’s Health Unit, Section of General Internal Funding was provided by the National Cancer Institute UG1CA-189867 and NIH
Medicine, Boston University School of Medicine (Dr Gunn); Department of P30CA008748, which had no role in the study design; collection, analysis, or
Health Law, Policy and Management, Boston University School of Public interpretation of data; or writing of the article or the decision to submit it for publication.
Health (Drs Gunn, Bokhour, and V.A. Parker), Massachusetts; Psychiatry & The authors have no conflicts of interest to disclose.
Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, Correspondence: Christine Holmberg, PhD, Institute of Public Health,
New York (Dr P.A. Parker); NRG Oncology, and The University of Charit2-Universit.tsmedizin, Seestr 73, Haus 10, 13347 Berlin, Germany
Pittsburgh, Pittsburgh, Pennsylvania (Dr Bandos); and Institute of Public (Christine.Holmberg@charite.de).
Health, Charit2-Universit.tsmedizin, Berlin, Germany (Dr Holmberg and Accepted for publication May 8, 2017.
Ms Blakeslee). DOI: 10.1097/NCC.0000000000000517
Explanatory Models of Risk in Breast Cancer Cancer NursingA, Vol. 42, No. 1, 2019 n 3
M
edical practice is increasingly engaging in individ- understanding of illness is represented in the following cate-
ual risk assessment to identify populations that may gories: etiology, pathophysiology, course of illness, symptoms,
be susceptible to developing future disease. Although and treatments for a given condition. Explanatory models
there may be benefits to targeting early prevention among some recognize that illness is experienced through perceptions rooted
high-risk groups, conceptually, risk is applied to populations, in our explanations of sickness, social positions, and systems of
and making deterministic statements about an individual’s risk meaning,11 facilitating a multidimensional understanding of
based on population estimates is far from certain.1 When sta- perceptions. To date, explanatory models have been examined
tistical estimates of risk are provided to individuals, it implies among patients who have experienced manifest disease.12Y14
that their own personal risk is objective and easily measured2 However, the focus on meaning of illness from an individual’s
and that individuals should act on this objective risk measure.3 perspective that characterizes explanatory models may be a helpful
However, risk, when understood from a sociological perspec- framework in understanding how risk perceptions influence
tive, represents a complex interplay between individual behav- health behaviors. Thus, this study applies the explanatory model
iors, structural and social contexts, and embodied risk, that is, framework to the context of discussions about breast cancer risk
risk residing within the body in the absence of manifest illness in women who are counseled about treatment options for breast
(eg, abnormal biopsies that may increase clinical estimates of cancer risk. This analysis allows for an understanding of how
risk).4 Still, risk estimation is frequently given at the individual women attribute meaning to being at risk.
level as impetus for adopting preventive behaviors. Breast cancer risk counseling with the aim of prevention is
With an increasing number of conditions identified at the common, and we chose this context to explore the social dimen-
point of risk (vs manifest disease) and for which such individ- sion of risk perceptions using explanatory models given that
ualized risk estimates are communicated, it becomes increas- more logically based theories do not accurately describe women’s
ingly important to further tease out what happens during behaviors. The most common reasons physicians discuss breast
one-on-one risk communication. Others have shown that risk cancer risk and treatment options with women are a family
estimates differ from individual’s risk understanding and may history of breast cancer and/or clinical findings that indicate risk,
therefore not be used for individual decision making.5Y8 How- such as biopsy results indicating atypical lobular hyperplasia,
ever, they have not investigated how different aspects of percep- atypical ductal hyperplasia, or lobular carcinoma in situ (LCIS).
tions, social influences, and ideas about illness come together to Often in such situations, more formal assessments of risk in-
inform decision making. cluding genetic testing for BRCA1/BRCA2 mutations and the
Theories of risk perception and health behaviors span several use of risk prediction algorithms15Y18 are used to quantify a
disciplines, adopting a range of perspectives and explanations for woman’s risk and help guide treatment decision making for
how individuals form risk perceptions and how perceptions are both women and physicians. After identifying women at high
related to health behaviors. Psychologically focused theories risk, physicians may provide recommendations for enhanced
tend to represent the process by which perceptions are formed screening, behavior changes, or medical treatments (eg, chemo-
as a 2-dimensional process.9 One dimension represents the prevention medications, surgery) with the goal of risk reduction.
analytical, logical, and probabilistic processing that produces Interestingly, although women often overestimate their
perceptions; the other is experientialVthat is, it is intuitive, risk for breast cancer relative to communicated (objective) risk
unconscious, and automatic.10 Medical anthropology and soci- levels,19Y21 the use of preventive interventions such as chemo-
ology adopt a ‘‘meaning-centered’’ approach to studying risk by prevention medications are seldom adopted by patients for whom
characterizing health beliefs to explain why groups of individuals these interventions would provide risk-reduction benefits.22,23
construct health and illness in particular ways. Broader social Again, this suggests a more complex relationship between
science literature expands these understandings of risk further risk perception and health behavior. We therefore investigated
into the social and moral world, examining the various influ- whether the explanatory model framework can be applied to risk
ences on ideas of risk.1 The application of theory to under- conditions, such as breast cancer risk. Understanding women’s
standing risk perceptions can help explain individual behaviors meaning-making about a risk diagnosis could impact the de-
that deviate from expectations, yet more research is needed velopment of more patient-centered approaches to managing
to identify appropriate theory for particular contexts. Arthur risk. For example, eliciting and addressing patient understand-
Kleinman and colleagues11 have developed a patient-centered ings of the etiology of risk and cancer, or women’s expectations
approach to understanding an individual’s beliefs and behav- about the trajectory of risk, may assist clinicians in counseling
iors with regard to disease, which he termed an explanatory about personal risk, risk-reducing behaviors, and preventive
model.12 Kleinman et al11 argued that a patient’s understand- treatments. Therefore, this analysis sought to (1) elucidate what
ings of his/her illness need to be taken into consideration in constitutes an explanatory model of risk and (2) describe the
patient-doctor interactions to ensure appropriate healthcare explanatory models of risk held by women identified to be at an
delivery, including treatment. He posited that an individual’s increased risk for developing breast cancer.
Explanatory Models of Risk in Breast Cancer Cancer NursingA, Vol. 42, No. 1, 2019 n 5
We found evidence that many of Kleinman et al’s categories Abbreviation: NSABP, National Surgical Adjuvant Breast and Bowel Project.
related to explanatory models were relevant to the context of
breast cancer risk: overall, 4 of the 5 original categories were
represented in women’s explanatory models of risk for breast Individual Categories of the Explanatory
cancer: etiology, symptoms, course of illness, and treatment. Model Framework
The fidelity of the etiology and treatment domains to the ETIOLOGY
original definitions was maintained. For other domains, for
example, symptoms and course of illness, some of the The original definition of etiology encompasses what partic-
concepts required revision to reflect risk, described in Table 2. ipants perceive to be the causes of risk or illness. The concept
There was a lack of evidence in the data that pathophysiol- of etiology of risk was very closely aligned with etiology as rep-
ogy played a role in developing explanatory models of risk. resented in explanatory models of illness. Women described a
Risk was not described as changing bodily function or broad range of causes of breast cancer risk, with most describing
something that was necessarily sensed. In addition, a category a multimodal etiology. One participant describes this multifac-
had to be added to the model that was not accounted for by torial exposure perspective:
Kleinman et al’s concepts: social comparisons. The social I just feel like it’s justVit’s not all genetics. Who knows?
comparison element captures the phenomenon that risk is It could be a little cocktail of environmental exposure,
consistently evaluated in comparison with others’ experience in a little bit of genetic mixed upIit’s just something that
the social world. justVit happens and you only have so much control. I
Specific findings related to each category are discussed call it gravity. You just have so much control over that
hereinafter. gravity. (participant N, Gail risk of 2.01%Y3%)
Explanatory Models of Risk in Breast Cancer Cancer NursingA, Vol. 42, No. 1, 2019 n 7
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Explanatory Models of Risk in Breast Cancer Cancer NursingA, Vol. 42, No. 1, 2019 n 11