Department of Obstetrics and Gynecology, Penn Medicine, Philadelphia, PA, 19104, USA.
Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, 19104, USA.
Qual Life Res. 2024 Dec;33(12):3459-3467. doi: 10.1007/s11136-024-03805-x. Epub 2024 Oct 14.
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.
We conducted semi-structured interviews with reproductive-aged women with SCD and performed thematic analysis.
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.
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.
本研究旨在通过定性访谈，了解成年镰状细胞病（SCD）女性患者的日常生活和就医经历。
我们对生育年龄的 SCD 女性患者进行了半结构化访谈，并进行了主题分析。
我们分析了 20 名参与者的访谈。我们的数据显示出三个总体主题：对疾病的认知、医疗保健系统的转变，以及耻辱和偏见。参与者从 SCD 中感受到了力量感和无力感，这些感受随着时间的推移而不断发展，对他们的生活产生了全球性的影响。从儿科到成人护理的过渡是一个脆弱的时期，既涉及疾病特征的变化，也涉及医疗保健系统转变的挑战。最后，参与者在 SCD 护理中面临歧视和偏见，表现为不重视自己的疾病专业知识或延续“寻药”的刻板印象。在这种偏见的背景下，一些参与者优先选择寻找同种族的提供者。
SCD 的经历对 SCD 女性患者的日常生活质量有重大影响，并且她们的疾病仍存在持续的护理差距。在我们的研究人群中，SCD 作为一种身心压力源，需要跨学科支持，这一点不应被低估。还需要建立更强大的系统来支持从儿科到成人护理的过渡，这不仅需要医疗机构层面的支持，还需要支持患者参与自己的护理。最后，对提供者进行反种族主义实践以及识别和消除偏见的教育和培训对于改善 SCD 患者的护理至关重要。SCD 经历中性别、种族和性别之间的可能相互作用值得进一步探讨。
