Like milk on the stove: Healthcare professionals navigating uncertainty when caring for families with 22q11DS
Our study reveals how healthcare professionals manage the uncertainty associated with 22q11DS, highlighting the importance of peer support and multidisciplinary team collaboration. Providers recognize the limits of their medical expertise and value the perspectives of families living with the condition. Their coping strategies play a critical role in handling uncertainty and suggest a need for further emphasis in the literature on the experiences of healthcare professionals dealing with rare diseases.
Authors
- Luzius A. Steiner (ORCID: https://orcid.org/0000-0002-1437-3532)
- Bernice S. Elger (ORCID: https://orcid.org/0000-0002-4249-7399)
- Cheryl Cytrynbaum (ORCID: https://orcid.org/0000-0002-3742-1250)
- Eva De Clercq (ORCID: https://orcid.org/0000-0002-7835-9553)
- Sophie Ayoub
Institutions
- University of Geneva (CH)
- University of Basel (CH)
- University of Toronto (CA)
- Hospital for Sick Children (CA)
- University Hospital of Basel (CH)
- University Centre of Legal Medicine (CH)
Publication Details
- Journal
- PLoS ONE
- Published
- 2025-01-09
- DOI
- https://doi.org/10.1371/journal.pone.0313845
- Citations
- 1
- Primary Topic
- Congenital heart defects research
- Type
- article
- Field-Weighted Citation Impact
- 0.81
Funders
- National Science Foundation
- Schweizerischer Nationalfonds zur Förderung der Wissenschaftlichen Forschung