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.

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Institutions

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

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article

Experiences with healthcare navigation and bias among adult women with sickle cell disease: a qualitative study

Jessica Wu, Morine Cebert, Andrea H. Roe, Katherine Mahoney et al.
2 citations
Quality of Life Research
Hemoglobinopathies and Related Disorders
0.88
article

Experiences with healthcare navigation and bias among adult women with sickle cell disease: a qualitative study

Jessica Wu, Morine Cebert, Andrea H. Roe, Katherine Mahoney, Kent McVay, Farzana Sayani
article en
2 citations

Abstract

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.

Quality of Life ResearchVol. 33(12)
Sacred Heart University (US), Penn Center for AIDS Research (US), University of Pennsylvania Health System (US), University of Pennsylvania (US)
University of Pennsylvania
Gender equality
Openalex Percentile: Top 23%
Hemoglobinopathies and Related Disorders
0.88
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Experiences with healthcare navigation and bias among adult women with sickle cell disease: a qualitative study — Jessica Wu, Morine Cebert, et al. · Quality of Life Research (2024) | TGRS Research Map | TGRS