There is a small but growing body of literature on genetic counseling communication, particularly in cancer genetics (Butow et al., 2004
; Roter et al., 2005; Ellington, Baty et al., in press
; Ellington, Roter, et al., 2005
; Lobb et al., 2004
; Lobb et al., 2005
; Pieterse, van Dulmen, Ausems et al., 2005
; Pieterse, van Dulmen, Beemer, Ausems & Bensing, 2005
; Roter, Ellington, Erby, Larson, & Dudley, in press
). These initial projects have examined the communication of clients of European descent and have assessed only pre test sessions. The current study offers two novel contributions to this body of literature. First, we describe cancer genetic counseling communication for sessions with African American individuals at familial risk. Second, we provide an examination of post test communication and how the dialogue may vary from pre to post sessions and for carriers and non carriers.
Consistent with previous research conducted on non-Latino Caucasians, we found that the communication in cancer genetic counseling pre test sessions tends to be largely biomedical in nature with significantly less talk devoted to psychosocial issues (Ellington, Baty et al., 2005
; Lobb et al., 2004
; Pieterse, van Dulmen, Ausems et al., 2005
). Some differences from previous findings are evident, such as more provider talk of an emotional nature. When compared to Pieterse et al.’s work (Pieterse, van Dulmen, Beemer et al., 2005
), the participants in the present study asked fewer questions, but discussed more psychosocial issues. These findings may reflect the fact that these sessions were part of a larger study with frequent communication concerning the project as a whole, and a pre test education session (Kinney et al., 2005
; Kinney, Simonsen, Baty, Mandal, Neuhausen, Seggar et al., in press-a
; Kinney, Simonsen, Baty, Mandal, Neuhausen, Seggar et al., in press-b
). Thus, one explanation for fewer questions is that clients already felt well informed. An alternative explanation is the racial and socioeconomic power asymmetry between the providers and the clients (Cooper & Roter, 2002).
A key purpose of the pre test session is to promote informed decision making about testing and thus the predominant focus of previous research has been on the communication during these initial sessions. As one reviewer of this manuscript noted, the pre test sessions tended to have more of routine format involving biomedical information than post test sessions. For example, a large portion of the pre test session is devoted to family and medical history taking and the dialogue structure is turn taking (i.e., the genetics services providers asks a question about family history and the client provides an answer). The post test session is equally important, complex and delicate, particularly for individuals at familial risk for cancer. Counselors must convey test results including lay explanations of test specificity and sensitivity, discuss screening recommendations based on carrier status, discuss subsequent results disclosure with family members, and assess the potential emotional reactions of clients (e.g., relief, guilt, disappointment, fear, and anxiety). Our findings suggest that providers are equally emotionally responsive in the pre and in the post test sessions.
We found that post test communication was more consistent with some aspects of a provider-driven educational approach than the pre test sessions. More of the genetic services providers’ post test communication was devoted to the provision of Biomedical information (including screening recommendations) with fewer questions and psychosocial statements than in the pre test. The pre and post test differences in proportion of talk devoted to Biomedical information may be explained in part by the separate educational session held prior to the pre test counseling session. A combined education and counseling pre-test session is the most common mode of practice and thus the generalizability of our findings are limited somewhat by this “extra” session. The benefits of a combined vs. separate pre-testing session remain a relevant empirical and clinical question.
As one would expect, the clients devoted a significant portion of the pre test session providing Biomedical information
(including family history). Conversely, the majority of what the client said in the post test sessions were comments indicating that they were receiving a large amount of information and agreeing with what was being said (e.g., “uh-huh, yes”). Among a Caucasian population, this client verbal behavior has been interpreted by investigators as a sign of passive listening or passive learning which may result in reduced understanding for the counselee as compared to a more interactive discussion (Butow & Lobb, 2004
). Another explanation for a large percentage of client post-session agreement-type statements may be specific to this ethnic group. The consistent, almost rhythmic murmuring of “uh-huh,” “yeah,” “hmm,” is common in African American interpersonal exchanges and is referred to as back channeling (Green, 2002
). Back channeling indicates that the listener is encouraging the speaker to continue and is “in tune” with what the speaker is saying. The specific RIAS back channel code reflects attentiveness and is a “provider-only” code which has been the topic of some controversy in the literature (see Roter & Larson, 2002
; Sandvik, Eide, Lind, Graugaard, Torper & Finset, 2002
). Thus in the present study the RIAS code for agreement was used for client utterances such as “uh-huh” and to some extent may reflect active engagement rather than passive listening.
Of additional note, in contrast to the pre test sessions, there was a significant reduction in the post test session of counselor statements reflecting partnership and activation. These communication skills are important in trust building with clients and helping them make informed decisions (Jenkins, Fallowfield, Souhami, & Sawtell, 1999
). Research from Hall and colleagues (Hall, Roter & Katz, 1988
) suggests that these skills are equally important in promoting adherence to provider recommendations. The post test session provides a critical opportunity for counselors to introduce and/or reinforce breast and ovarian cancer screening practices among carriers and non carriers alike. Using communication strategies that are known to increase adherence is important in the clinical setting, particularly with African American clients who as a group tend to have low cancer screening practices (Crump, Mayberry, Taylor, Barefield, & Thomas, 2000
Another verbal strategy to promote screening among clients besides Activate and partner statements
may be what Sarangi and colleagues (Sarangi, Bennert, Howell, Clarke, Haper, & Gray, 2004
) call a “reflective frame.” According to these investigators, reflective frames are provider questions which elicit client introspection about a decision making process and subsequent consequences. The RIAS does not include this code, so we were unable to ascertain if a subset of provider psychosocial questions are consistent with reflective frames.
We found when providers were informing clients that they were BRCA1
mutation carriers, they provided more Biomedical information
(which includes screening recommendations), Psychosocial communication
(which includes discussion of results with family members) and asked more psychosocial questions than when they talking with non carriers. Additionally, as one would expect, providers appeared to be using a more “down to business” communication approach with carriers than non carriers (e.g., less laughter and social chit-chat). Our findings for post test communication with carriers are consistent with sociolinguistic investigations of genetic counseling (Benkendorf, Prince, Rose, DeFina, & Hamilton, 2001
). Genetic service providers are likely to feel most comfortable coming from a position of “medical expert” when delivering information that is likely to invoke fear and a feeling of vulnerability among clients. This is reflected in provider style focused on imparting biomedical information in an educational type format, which reflects sociolinguistic concepts of differential power and social distance in interpersonal encounters (Brown & Levinson, 1987
). Further research is warranted to understand how this interpersonal positioning influences genetic counseling client outcomes, particularly when the provider is from the dominant culture and the client is from a minority culture. More research is also needed to determine why clients with carrier status did not differ in their communication compared to those with non carrier status.
A limitation of this study is our small sample size which resulted in limited power. Thus we were precluded from statistically examining linkages between the communication variables and client characteristics and outcomes. Second, with only four genetic service providers, we cannot be certain that the communication behaviors are generalizable in nature. Third, the African American kindred participating in this study may not be representative of African Americans in the United States (Kinney et al., 2005
). Many members of this kindred resided in rural Louisiana and most family members described themselves as Creole. Fourth, all genetic service providers were of European Caucasian ancestry, while all study participants were of African ancestry. Since there are known to be differences in communication depending on whether the provider is of the same ethnicity as the consumer (Cooper, Roter, Johnson, Ford, Steinwachs & Powe, 2003
), this also limits the generalizability of our findings. Finally, because the counseling sessions were part of a research study, aspects of the research protocol (e.g., baseline interview) may have affected the genetic counseling exchange.
Despite these limitations, the current study found important pre-post testing differences in provider communication with carrier and non carrier clients that will be useful in designing protocols for counseling of African American.