Care Choreographies and the Making of the Psychosocial in Genetic Counseling
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.
- EligibilityCriteria: INCLUSION CRITERIA:  To be eligible for this protocol, participants must be genetic counselors currently practicing at NIH, be a patient having a session with one of the aforementioned genetic counselors, and be at least 18 years of age. For Phase I (direct observation), we will aim to recruit genetic counselors from at least one clinical team at NIH.  For Phase II (open-ended interviews), we will recruit approximately 20 NIH staff members from those in Phase I for interviews. Potential participants for Phase II will be recruited through a purposive sampling approach, identified for their expertise in the psychological or social dimensions of clinical genetics. Potential participants will include participants in Phase I but will also include potential interviewees of interest practicing outside those who are observed in Phase I. We anticipate concluding enrollment by June 2024.  EXCLUSION CRITERIA:  Anyone who is under 18, is neither a genetic counselor (or those with whom they have genetic counseling sessions) nor allied health professional, or is unable to provide consent, will not be included in the protocol. - HealthyVolunteers: No - Gender: All - MinimumAge: 18 Years - MaximumAge: 115 Years - StdAgeList: Adult, Older Adult - StudyPopulation: Genetic counselors at NIH and their respective patients. - SamplingMethod: Non-Probability Sample