Observing the role of genetic counselors in patient care
Care Choreographies and the Making of the Psychosocial in Genetic Counseling
This study looks at how genetic counselors help patients by providing emotional support and managing their concerns during counseling sessions.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 250 (estimated) |
| Ages | 18 Years to 115 Years |
| Sex | All |
| Sponsor | National Institutes of Health Clinical Center (CC) NIH |
| Locations | 1 site (Bethesda, Maryland) |
| Trial ID | NCT06280833 on ClinicalTrials.gov |
What this trial studies
This observational study aims to explore the evolving role of genetic counselors in healthcare, particularly focusing on their management of psychosocial aspects during patient interactions. The study will involve direct observation of counseling sessions and team meetings, followed by open-ended interviews with selected genetic counselors. Researchers will take detailed notes during the sessions to capture discussions on risk, diagnosis, prognosis, and emotional support strategies. The goal is to ethnographically describe the everyday practices of genetic counseling and understand its integration into broader medical care systems.
Who should consider this trial
Good fit: Ideal candidates include genetic counselors currently practicing at NIH and patients aged 18 years or older scheduled to meet with these counselors.
Not a fit: Patients who are under 18 or not scheduled for a session with a genetic counselor at NIH may not receive any benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance the understanding of genetic counseling practices, leading to improved patient support and care strategies.
How similar studies have performed: While this study focuses on a specific observational approach, similar studies have successfully explored the roles of healthcare professionals in patient care, indicating potential for valuable insights.
Eligibility criteria
Show full inclusion / exclusion criteria
* INCLUSION CRITERIA: To be eligible for this protocol, participants must be genetic counselors currently practicing at NIH, be a clinical colleague of these genetic counselors, 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 who were not 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.
Where this trial is running
Bethesda, Maryland
- National Human Genome Research Institute (NHGRI) — Bethesda, Maryland, United States (Recruiting)
Study contacts
- Principal investigator: Benjamin D Solomon, M.D. — National Human Genome Research Institute (NHGRI)
- Study coordinator: Sarah Elizabeth Roth
- Email: sarah.roth@nih.gov
- Phone: (301) 443-0283
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.