Care Choreographies and the Making of the Psychosocial in Genetic Counseling

Study Summary

Background: Genetic counselors play a new and evolving role in medical care. Recent advances in genetic testing are changing many health care treatments, and genetic counselors play a key role in teaching people how their genes may affect both health and treatments. Genetic counselors may also help guide people through complex talks about their treatment risks; their chances for recovery; and their social and emotional health and wellbeing. Researchers want to learn more about the role genetic counselors play in health care. Objective: To observe how genetic counselors at NIH manage the social and psychological aspects of patient care. Eligibility: Genetic counselors who work at NIH. People aged 18 years or older who are scheduled to meet with one of these counselors are also needed. Design: An investigator will sit in on the session between the counselor and the participant. The investigator will take notes. The session will not be recorded. The investigator will leave at any point if asked. The investigator will focus on talk about social and psychological care. That person will also listen to talk about risk; diagnosis; odds of recovery; and hope, grief, and loss. That person will note strategies that help the participant manage their emotions and how they perceive their risks. Counselors may later have a 1-hour interview with the investigator. They will answer questions about their experiences as a care provider at NIH. Participants will have only 1 session with the investigator. Counselors may have 4 to 10 sessions with an investigator over 8 months. ...

Primary Outcome

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.

Conditions Studied

Study Locations (1)