Care Choreographies and the Making of the Psychosocial in Genetic Counseling

Study Description: This is an ethnographic study of genetic counseling practice at NIH. The project will involve two phases: direct observation and open-ended interviews. Phase I (direct observation) will involve the associate investigator, Sarah Roth, observing genetic counseling sessions and genetic counseling team meetings. She will take observational field notes on discussions of psychosocial care among counselors, as well as clinical communication around risk; diagnosis and prognosis; hope, grief, and loss; and counseling strategies that address the relationship between risk perception and emotion. For Phase I, we will recruit all participants from NIH teams. For Phase II (open-ended interviews), we will ask approximately 20 selected participants from interdisciplinary clinical teams for interviews (i.e., genetic counselors from Phase I). The same investigator will conduct open-ended interviews with contacted NIH staff regarding the role of genetic counselors in the institutional landscape. Interviews will last approximately 60 minutes. They will be audio-recorded and then transcribed by a third-party contracting service which has been used in previous NIH studies. Objectives: The objectives of this study are to ethnographically describe the everyday care work of genetic counseling; explore genetic counselors descriptions and uses of psychosocial care modalities in protocols; and characterize the role of genetic counselors in broader systems of medical care. Endpoints: Data from direct observations and interviews will be synthesized into a qualitative codebook. Themes will include self-perception; discussions of psychosocial care, discussions of risk and emotion, and clinical communication around risk; diagnosis and prognosis; and hope, grief, and loss.