Exploring how the process of genetic counselling influences outcomes for individuals with serious mental illnesses

Serious mental illness (SMIs), like schizophrenia, schizoaffective, and bipolar disorder, impact almost one million Canadians. The cause of SMIs are extremely complex. While research clearly demonstrates a genetic component, multiple genes are thought to interact with environmental factors to cause the illnesses. Until recently, knowledge on the genetic and environmental causes of SMIs have not been addressed in standard medical care. However, emerging evidence suggests that genetic counselling (GC) can provide important and far-reaching benefits for patients, including decreased internalized stigma and increased perceived control. Anecdotal evidence also suggests that GC may improve treatment adherence, which represents a serious and significant challenge in illness management for persons with SMIs.

This study will explore and identify the aspects of the GC process that most effectively and positively influence outcomes, specifically medication adherence, for persons with SMIs.

Males and females with schizophrenia, schizoaffective, or bipolar disorder will be invited to participate in two interviews — one conducted prior to receiving GC, and the other within two weeks of receiving GC. Interviews will explore patients’ perceptions of SMIs and psychotropic medication; psychosocial and informational needs; and expectations about GC. The nature of the patient-counsellor interaction; the depth/type of information provided; and the effectiveness of different counselling approaches in relation to patients’ needs and expectations will also be examined. All interviews will be audiotaped, transcribed verbatim, and analyzed using the constant comparative method and coding procedures of Grounded Theory.

The ultimate goal of Semaka’s study is to develop a theoretical model that explains how GC influences patient outcomes, specifically treatment adherence, which will inform the development of evidence-based clinical practice guidelines for the routine delivery of GC for SMIs.