Patient perspectives on the process and outcomes of psychiatric genetic counseling: An “Empowering Encounter”

Abstract

Genetic counseling (GC) for individuals with mental illness (MI) has been shown to improve patient outcomes, such as increased empowerment and self‐efficacy. However, we do not understand how the process of GC results in these improvements or what aspects of the process are critical. In this qualitative study, we explored the process and outcome of psychiatric GC from the patient's perspective. Ten Canadian adults with a diagnosed MI were interviewed prior to, and 1 month following, psychiatric GC. Interview transcripts were analyzed using Grounded Theory methodology and generated a theoretical framework that describes the process and outcomes of psychiatric GC from the patient's perspective. Participants described the counseling process to be an “empowering encounter” and identified specific attributes of the process and characteristics of the counselor that contributed to their empowerment. Participants gained a new perspective on the cause and management of their MI, which seemed to facilitate a deeper acceptance of their condition. Consequently, participants reported being empowered and feeling less shame, blame, and guilt; which reportedly made them more able to manage their MI and protect their mental health; and more open to talking about their condition with family and friends. This study provides a better understanding of how the process of GC influences patient outcomes and highlights features of the process that maximize patient benefit.

Genetic feedback for psychiatric conditions: Where are we now and where are we going

“…Individuals may believe that a change in behavior is important; however, the current literature does not provide evidence that receiving genotypic information is strongly associated with behavior change. On a promising note, some evidence suggests that education about nondeterministic nature of genetic influences can mitigate negative effects on self-agency (Lebowitz & Ahn, 2018), which aligns with evidence that the delivery of genetic feedback in conjunction with effective educational materials and support can promote positive patient outcomes (Austin, 2019;Inglis et al, 2015;Semaka & Austin, 2019).…”

Genetic counselors’ attitudes toward and practice related to psychiatric genetic counseling

“…Why should we combat these biases? Genetic counseling can make a real difference for those who live with psychiatric disorders and their families (Hippman et al, ; Inglis et al, ; Semaka & Austin, ). Counseling on psychiatric disorders has the power to educate patients on the causes of these conditions, correct misinformation patients may be harboring, and encourage patients to monitor early signs and symptoms of psychiatric disorders.…”

Perceptions of genetic risk, testing, and counseling among individuals with eating disorders

“…After reading vignettes about and imagining having received genetic counseling, participants anticipated significant reductions in feelings of guilt, stigma, shame, feeling differentially treated, and feeling looked down upon. Data from previous studies suggest that our participants' anticipated outcomes of genetic counseling may be realistic-specifically, in the context of other psychiatric conditions, genetic counseling has been shown to reduce stigma and shame, and to increase empowerment (Austin & Honer, 2004, 2007Costain et al, 2014;Inglis et al, 2015;Semaka & Austin, 2019). Given that people with eating disorders report avoiding or postponing seeking or using treatment because of stigma and shame (Becker et al, 2010), and/or guilt and the belief that they should be able to help themselves (Thompson & Park, 2016), this finding could suggest important clinical utility for genetic counseling for eating disorders.…”