ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2024
Experiences with healthcare navigation and bias among adult women with sickle cell disease: a qualitative study.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed.
- The acceptability and feasibility of a randomised controlled trial of serial prophylactic exchange blood transfusion versus usual care in pregnant women with sickle cell disease: a qualitative study.BMC pregnancy and childbirth · 2026Trial
- Health Equity Concerns in People with Sickle Cell Disease and Recurrent Vaso-Occlusive Crises: Results from an International Survey Study.Drugs - real world outcomes · 2026Article
- A Qualitative Study of the Lived Experiences of Pregnancy and Childbirth: Unheard Voices of Black Women With Sickle Cell Disease.SAGE open nursingArticle
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Authors and funding
6 authors.
Funding
Abstract
purposeThe purpose of this study was to use qualitative interviews to understand the experiences of adult women with sickle cell disease (SCD) through daily life and navigating the healthcare system.
methodsWe conducted semi-structured interviews with reproductive-aged women with SCD and performed thematic analysis.
resultsWe analyzed interviews from 20 participants. Our data demonstrated three overarching themes: perceptions of disease, transitions of care, and stigma and bias. Participants identified feelings of both empowerment and powerlessness from SCD that evolved over time and globally impacted their lives. The transition from pediatric to adult care was a vulnerable period, both surrounding changes in disease character and challenges transitioning healthcare systems. Finally, participants faced discrimination and prejudice within SCD care, which manifested as disvaluing of their own disease expertise or perpetuation of a "drug-seeking" stereotype. In the context of this bias, some participants prioritized seeking same-race providers.
conclusionExperiences 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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