Experiences with healthcare navigation and bias among adult women with sickle cell disease: a qualitative study.
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| Title: | Experiences with healthcare navigation and bias among adult women with sickle cell disease: a qualitative study. |
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| Authors: | Wu, Jessica K. (AUTHOR), McVay, Kyler (AUTHOR), Mahoney, Katherine M. (AUTHOR), Sayani, Farzana A. (AUTHOR), Roe, Andrea H. (AUTHOR), Cebert, Morine (NURSE) |
| Source: | Quality of Life Research. Dec2024, Vol. 33 Issue 12, p3459-3467. 9p. |
| Subjects: | Transitional care, Patient experience, Sickle cell anemia, Patients' attitudes, Childbearing age |
| Abstract: | Purpose: The 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. Methods: We conducted semi-structured interviews with reproductive-aged women with SCD and performed thematic analysis. Results: We 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. Conclusion: 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. Plain English Summary: This study uses patient interviews to describe the experiences of women with sickle cell disease (SCD) navigating the healthcare system. The goal of the study is to highlight patients' own experiences in order to prioritize patient-centered care in the management of SCD. Our results showed that different individuals perceive living with SCD differently, in both a positive and negative light. The transition from receiving pediatric to adult medical care for their SCD was a vulnerable time period where individuals had to face changes in both their disease and the healthcare system they were navigating. Finally, patients often experienced stigma and biased care from healthcare staff, manifesting as questioning of their own expertise on their disease and perpetuation of "drug-seeking" stereotypes, leading some to value the importance of having same-race providers. These results help better understand how women with SCD experience living with their disease and identify clinical care gaps that need to be filled, such as more robust systems for supporting the transition from pediatric to adult care and increased recognition and directed training on implicit and explicit bias. [ABSTRACT FROM AUTHOR] |
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| Database: | Psychology and Behavioral Sciences Collection |
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| Abstract: | Purpose: The 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. Methods: We conducted semi-structured interviews with reproductive-aged women with SCD and performed thematic analysis. Results: We 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. Conclusion: 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. Plain English Summary: This study uses patient interviews to describe the experiences of women with sickle cell disease (SCD) navigating the healthcare system. The goal of the study is to highlight patients' own experiences in order to prioritize patient-centered care in the management of SCD. Our results showed that different individuals perceive living with SCD differently, in both a positive and negative light. The transition from receiving pediatric to adult medical care for their SCD was a vulnerable time period where individuals had to face changes in both their disease and the healthcare system they were navigating. Finally, patients often experienced stigma and biased care from healthcare staff, manifesting as questioning of their own expertise on their disease and perpetuation of "drug-seeking" stereotypes, leading some to value the importance of having same-race providers. These results help better understand how women with SCD experience living with their disease and identify clinical care gaps that need to be filled, such as more robust systems for supporting the transition from pediatric to adult care and increased recognition and directed training on implicit and explicit bias. [ABSTRACT FROM AUTHOR] |
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| ISSN: | 09629343 |
| DOI: | 10.1007/s11136-024-03805-x |
