Who should I bring? a qualitative examination of the role of the support person in the cancer genetic counseling appointment

Abstract

Perceived social support positively predicts healthcare outcomes (cf. Codori, Slavney, Young, Miglioretti, & Brand, 1997). Yet, only one study specifically examines the role of the support person in genetic counseling sessions (for Huntington's Disease; Williams et al., 2000). The present study investigated the role of the support person in cancer genetic counseling from the perspective of practicing genetic counselors. There were three major research questions: (1) In what ways do cancer genetic counselors involve the support person in patients' genetic counseling sessions? (2) What variables do cancer genetic counselors believe contribute to successful and unsuccessful support person performance? and, (3) How can cancer genetic counselors help patients construct the best psychosocial support within genetic counseling sessions and after the genetic counseling relationship ends? Fourteen cancer genetic counselors engaged in semi-structured, phone interviews exploring their: approach to talking with patients about bringing a support person to session(s), impressions of patients' decision-making process with regard to choosing a support person, examples of successful and unsuccessful support person involvement, and perceived obligations to the support person. Using grounded theory analysis (Glaser, 1978; Strauss & Corbin, 1990) data were organized into themes supporting a core category (general theory). The derived core category is consistent with major tenets of Relational Regulation Theory (Lakey & Orehek, 2011): social support buffers against negative patient reactions, and perceived support comprises the mechanism through which buffering occurs. Specific to the present study, findings indicate support persons achieve the most success when three core conditions are met: 1) perceived as supportive, 2) matches the patient's needs, and 3) is emotion-based, information-based, focused on decision-making, or a combination of the three. Additional findings regarding successful and unsuccessful support person qualities, patients' decision-making process while selecting a support person, and genetic counselor strategies for facilitating positive support person experiences during and after sessions are presented.