A “rotating menu” of medical uncertainty for families affected by telomere biology disorders: A qualitative interview study
In TBDs, medical uncertainty manifests as a network of multiple, interrelated, sources and issues, which require evolving management strategies. Researchers must be mindful that complex, synergistic uncertainty networks contribute to psychosocial challenges in TBDs. Additional research is warranted to address scientific uncertainty in TBDs, including clinical manifestations and underlying biology, and to develop psychosocial interventions that recognize and anticipate evolving uncertainty.
Authors
- Melissa B. Gilkey (ORCID: https://orcid.org/0000-0003-1561-1392)
- Sharon A. Savage (ORCID: https://orcid.org/0000-0001-6006-0740)
- Ashley S. Thompson (ORCID: https://orcid.org/0000-0003-1663-0317)
- Emily Pearce (ORCID: https://orcid.org/0000-0003-4222-9340)
- Allison Werner‐Lin (ORCID: https://orcid.org/0000-0003-3133-820X)
- Catherine Wilsnack (ORCID: https://orcid.org/0000-0001-5427-1015)
- Kurt M. Ribisl (ORCID: https://orcid.org/0000-0003-3318-8524)
- Paul K. J. Han (ORCID: https://orcid.org/0000-0003-0165-1940)
- Camella J. Rising (ORCID: https://orcid.org/0000-0002-4099-528X)
- Sadie P. Hutson (ORCID: https://orcid.org/0000-0003-3646-9946)
- Rowan Forbes Shepherd (ORCID: https://orcid.org/0000-0003-4510-0542)
- Arman Niknafs (ORCID: https://orcid.org/0000-0001-6509-275X)
- Alina Majid (ORCID: https://orcid.org/0009-0009-1433-5542)
- Toniya Brown
Institutions
- University of North Carolina at Chapel Hill (US)
- National Institutes of Health (US)
- Office of the Director (US)
- National Cancer Institute (US)
- Department of Health (ZA)
- University of Pennsylvania (US)
Publication Details
- Journal
- SSM - Qualitative Research in Health
- Published
- 2024-10-05
- DOI
- https://doi.org/10.1016/j.ssmqr.2024.100486
- Citations
- 1
- Primary Topic
- Health Systems, Economic Evaluations, Quality of Life
- Type
- article
- Field-Weighted Citation Impact
- 1.13
Funders
- National Institutes of Health
- National Cancer Institute
- Division of Cancer Epidemiology and Genetics, National Cancer Institute