Patient perceptions of genetic counselors' role and emotional support needs in adults with Parkinson's disease

Abstract

One of the roles of a genetic counselor, when returning genetic test results for Parkinson's disease (PD), is to provide emotional support to the patient. However, whether or not these needs are being met in the genetic counseling setting is unknown. In this cross-sectional qualitative study, semi-structured interviews with 15 PD research participants were conducted to evaluate their emotional needs and expectations throughout the genetic counseling process. Interview questions assessed participants' background understanding of genetic counseling, informational and emotional expectations prior to the genetic counseling session, and experience with emotional support throughout the genetic counseling process. Through reflexive thematic analysis, we defined four major themes: (1) knowledge of genetic counselors' role in education but not in emotional support, (2) limited expectations for emotional support, (3) emotional support is not sought from genetic counselors, and (4) emotional support from genetic counselors was viewed ambivalently. One of the most important findings from this study was that regardless of whether participants had previously heard of genetic counseling, none of the participants knew that the provision of emotional support was an aspect of the genetic counselor's role. Although the majority of participants did not expect emotional support from their genetic counselor, over 60% of participants recognized that receiving emotional support is or could be important to them. Collectively, these findings highlight the necessity for enhanced patient education pertaining to the informational and emotional support that genetic counselors are trained to provide. We suggest that clarifying the role of emotional support with patients may increase comfort in disclosing their emotional needs with genetic counselors, improving patient-centered care overall.