Center for Pediatric and Adolescent Comparative Effectiveness Research, Indiana University, HITS Building, 410 W. 10th St, Suite 2000A, Indianapolis, IN, 46202, USA.
Division of Pediatric Hematology Oncology, Department of Pediatrics, Riley Hospital for Children, Indianapolis, IN, 46202, USA.
BMC Health Serv Res. 2022 Feb 22;22(1):239. doi: 10.1186/s12913-022-07627-w.
Sickle cell disease (SCD) is associated with a wide range of complications. However, a multitude of barriers prevent SCD patients from receiving adequate healthcare, including difficulties with transportation and lack of provider knowledge about disease sequelae. Importantly, studies have demonstrated the benefits of telemedicine in addressing barriers to healthcare. While previous studies have identified barriers to care through quantitative methods, few studies have explored barriers which affect the pediatric SCD patient population in the Midwest, wherein the geographical landscape can prohibit healthcare access. Furthermore, few studies have established acceptability of telemedicine among caregivers and patients with SCD.
This study aims to increase understanding of barriers to care and perceptions of telemedicine by caregivers of pediatric SCD patients in a medically under-resourced area in the Midwest. Researchers conducted semi-structured interviews with caregivers of children with SCD. The interviews were audio-recorded and transcribed. Thematic analyses were performed.
Researchers interviewed 16 caregivers of 15 children with SCD. Thematic analyses of the interview transcripts revealed four broad themes regarding caregiver burden/stress, both facilitators and barriers to SCD healthcare, and general thoughts on the acceptability/usefulness of telemedicine.
This qualitative study describes common burdens faced by caregivers of SCD, barriers to and facilitators of SCD care in the Midwest, and caregiver perceptions of the usefulness and efficacy of telemedicine for SCD care.
镰状细胞病（SCD）与多种并发症相关。然而，许多障碍使 SCD 患者无法获得足够的医疗保健，包括交通困难和提供者对疾病后果的了解不足。重要的是，研究表明远程医疗在解决医疗保健障碍方面具有优势。虽然之前的研究已经通过定量方法确定了护理障碍，但很少有研究探讨影响中西部儿科 SCD 患者群体的障碍，其中地理景观可能会阻碍医疗保健的获取。此外，很少有研究确定 SCD 患者的照顾者对远程医疗的可接受性。
本研究旨在通过中西部医疗资源不足地区儿科 SCD 患者的照顾者来增加对护理障碍和远程医疗认知的理解。研究人员对 15 名患有 SCD 的儿童的照顾者进行了半结构化访谈。访谈进行了录音和转录。进行了主题分析。
研究人员采访了 16 名患有 SCD 的儿童的照顾者。对访谈记录的主题分析揭示了四个关于照顾者负担/压力的广泛主题，包括 SCD 医疗保健的促进因素和障碍，以及对远程医疗对 SCD 护理的有用性和疗效的一般看法。
这项定性研究描述了 SCD 照顾者面临的常见负担、中西部 SCD 护理的障碍和促进因素，以及照顾者对远程医疗治疗 SCD 的有用性和疗效的看法。
