Assessing Perception of Risk

Risk perception is a complex concept that captures the varied meanings that an individual attaches to being at increased risk. Genetic risks are often underestimated and overestimated (Fransen, Meertens, & Schrander-Stumpel, 2006). Understanding the factors influencing risk perception and how these factors relate to behavior change is a goal of the genetic counseling risk assessment and counseling process (Pilarski, 2009). Perceived risk may influence choices to access testing; inaccurate risk perceptions may lead to inappropriate choices. Watson et al. (1998) found a poor correlation between objective risk level of developing breast cancer recalled by women who had cancer genetic counseling and their perceived risk. The authors surmised that precise risk figures may be less important to women than having a general perception of their risk and a sense that this risk is manageable. While many individuals may find it difficult to quantify their cancer risks, accurate risk recall does not necessarily provide insight into the clients’ understanding of his/her risk nor the meaning attributed to it (Sivell, et al., 2008). Sensitivity and interpersonal skills of the counselor are important components of effective cancer risk communication (Bottorff et al., 1998), which creates even more of a challenge when working with clients who are deaf.

Positive and negative message framing and dichotomous interpretation by the client that an event or outcome will/will not happen, at either a high/low level, create a disconnect between the counselor’s task of explaining uncertainty with words and visual aids, and the client’s inclination to assign personally meaningful certainty to risk (Lippmann-Hand & Fraser, 1979; Bottorff et al., 1998; Hunt, Castaneda, & de Voogd, 2006). Failure to highlight the varied and contrasting meanings of risk articulated by client/provider dyads can undermine clinical communication, informed consent, and true patient-centered counseling and decision making (Hunt, Castaneda, & de Voogd, 2006).  Patients in Hunt’s 2006 study of private and public genetic specialty clinics did not weigh relative probabilities related in prenatal counseling sessions but reacted to risk with a sense that their baby was endangered. For these patients, it seems that “the at-risk concept was not understood to mean that something could be wrong, but that something actually was wrong.” The authors conclude that differences in clinical and personal meanings are not just a failure of effective transfer of information, but due instead to much deeper conceptual issues.

Austin (2010) eloquently describes the genetic counselor’s task as far more complicated than “assessing recall of objective numerical probability as the sole measure of whether or not our risk communication is effective.” The counselor is challenged to actively explore the many factors that may contribute to client risk perception, including the information shared in a genetic counseling session, but certainly not limited to that snippet of information. This approach to understanding client perspectives about risk, and other topics in a genetic counseling session, is consistent with culturally responsive counseling. Culturally responsive genetic counseling takes place when the counselor learns from the client, to help the client gain personally meaningful information and make the best decision for her unique situation.

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