Experiences with healthcare navigation and bias among adult women with sickle cell disease: a qualitative study
Experiences with SCD contribute significantly to daily quality of life in women with SCD, and ongoing care gaps exist in relation to their disease. Within our population, SCD as a physical and mental stressor requiring interdisciplinary support should not be underestimated. More robust systems to support the transition from pediatric to adult care are also necessary, both on a healthcare institution level and to support patients' engagement in their care. Finally, provider education and training on anti-racist practice and both recognizing and eliminating bias are essential to improving care of SCD patients. Possible interactions between sex, gender, and race in the experience of SCD warrant further exploration.
Authors
- Jessica Wu (ORCID: https://orcid.org/0000-0003-1780-6695)
- Morine Cebert (ORCID: https://orcid.org/0000-0002-3440-2089)
- Andrea H. Roe
- Katherine Mahoney (ORCID: https://orcid.org/0000-0002-5857-386X)
- Kent McVay (ORCID: https://orcid.org/0000-0002-1538-3732)
- Farzana Sayani (ORCID: https://orcid.org/0000-0002-8878-9274)
Institutions
- Sacred Heart University (US)
- Penn Center for AIDS Research (US)
- University of Pennsylvania Health System (US)
- University of Pennsylvania (US)
Publication Details
- Journal
- Quality of Life Research
- Published
- 2024-10-14
- DOI
- https://doi.org/10.1007/s11136-024-03805-x
- Citations
- 2
- Primary Topic
- Hemoglobinopathies and Related Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.88
Funders
- University of Pennsylvania