Experiences with healthcare navigation and bias among adult women with sickle cell disease
A qualitative study
Bibliographic Data
| ID | 15300210 |
|---|---|
| Authors | Jessica Wu (0009-0007-7803-4576, corresponding author), Jessica K Wu (0000-0003-1780-6695, University of Pennsylvania Health System, corresponding author), Kent McVay (0000-0002-1538-3732, University of Pennsylvania), Kyler McVay, Katherine Mahoney (0000-0002-8749-1740, University of Pennsylvania), Katherine M Mahoney, Farzana Sayani (0000-0002-8878-9274, University of Pennsylvania), Farzana A Sayani, Andrea H Roe (Penn Center for AIDS Research), Morine Cebert (0000-0002-3440-2089, Sacred Heart University) |
| Year | 2024 |
| Volume | 33 |
| Issue | 12 |
| Pages | 3459-3467 |
| Publication date | 2024-10-14 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Quality of Life Research (JOURNAL) |
| Journal identifiers | ISSN: 0962-9343 • E-ISSN: 1573-2649 |
| Publisher | Springer Science+Business Media (PUBLISHER • DE) |
| DOI | 10.1007/s11136-024-03805-x |
| PMID | 39400689 |
| OpenAlex | W4403378725 |
| Language | EN |
| References cited | 39 |
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
Disease · Empowerment · Feeling · Health care · Population · Prejudice (legal term · Qualitative research · Quality of life (healthcare · Thematic analysis · Hemoglobinopathies and Related Disorders · LGBTQ Health, Identity, and Policy · Medicine · Nursing · Prenatal Screening and Diagnostics · Psychology · Social Psychology · Gerontology
Saturation in qualitative research
To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales
Depression and Anxiety in Adults With Sickle Cell Disease
Contraceptive Attitudes and Beliefs of Women With Sickle Cell Disease
Sample sizes for saturation in qualitative research
| Highly cited | No |
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