Roberts Lisa R, Fider Carlene O, Sahin Safiye, Frederick Jayde, Nation Ilsa, Montgomery Susanne
School of Nursing, Loma Linda University, Loma Linda, CA 92354, USA.
School of Medicine, Loma Linda University, Loma Linda, CA 92350, USA.
Int J Environ Res Public Health. 2025 Feb 26;22(3):342. doi: 10.3390/ijerph22030342.
Sickle cell disease/trait (SCD/T) is the most common genetic blood disorder in the U.S., characterized by painful vaso-occlusive crises resulting in considerable morbidity and premature death. Advances in treatment have somewhat improved the quality of life and longevity. Therefore, people with SCD/T are now living into their reproductive years. However, pregnant individuals with SCD have a maternal mortality risk of up to 26 times higher than the national average. Individuals with sickle cell trait also have an increased risk of untoward maternal health outcomes. We sought to understand reproductive health concerns among women with SCD/T, through data collected from patients, caregivers, advocates, and healthcare professionals using key informant interviews and focus groups ( = 54). Audio recordings were transcribed verbatim, coded inductively, and analyzed thematically. Three major themes emerged: (1) the Dilemma of Love vs. Risk, (2) SCD/T Knowledge, and (3) the Mental and Emotional Toll of SCD/T. Reproductive concerns and experiences among women with SCD/T influence their mental health and social engagement. Programs are urgently needed that address the unique SCD/T reproductive health risks and communication and support needs. These include readily accessible, age-appropriate SCD/T reproductive health information, counseling, and engaging communication tools for women and their potential partners. Support requires a multidisciplinary approach.
镰状细胞病/特质（SCD/T）是美国最常见的遗传性血液疾病，其特征是疼痛性血管闭塞危机，会导致相当高的发病率和过早死亡。治疗方面的进展在一定程度上改善了生活质量和延长了寿命。因此，患有SCD/T的人现在活到了生育年龄。然而，患有镰状细胞病的孕妇的孕产妇死亡风险比全国平均水平高出26倍。患有镰状细胞特质的人出现不良孕产妇健康结局的风险也会增加。我们试图通过使用关键信息人访谈和焦点小组（n = 54）从患者、护理人员、倡导者和医疗保健专业人员那里收集的数据，了解患有SCD/T的女性的生殖健康问题。录音逐字转录，进行归纳编码，并进行主题分析。出现了三个主要主题：（1）爱与风险的困境，（2）SCD/T知识，以及（3）SCD/T的心理和情感负担。患有SCD/T的女性的生殖问题和经历会影响她们的心理健康和社会参与。迫切需要开展相关项目，以应对SCD/T独特的生殖健康风险以及沟通和支持需求。这些包括为女性及其潜在伴侣提供易于获取的、适合年龄的SCD/T生殖健康信息、咨询和有吸引力的沟通工具。支持需要采取多学科方法。
