Caregiver experiences with accessing sickle cell care and the use of telemedicine

dc.contributor.authorJacob, Seethal A.
dc.contributor.authorDaas, Roua
dc.contributor.authorFeliciano, Anna
dc.contributor.authorLaMotte, Julia E.
dc.contributor.authorCarroll, Aaron E.
dc.contributor.departmentPediatrics, School of Medicineen_US
dc.date.accessioned2023-05-08T11:09:31Z
dc.date.available2023-05-08T11:09:31Z
dc.date.issued2022
dc.description.abstractBackground: 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. Methods: 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. Results: 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. Conclusion: 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.en_US
dc.eprint.versionFinal published versionen_US
dc.identifier.citationJacob SA, Daas R, Feliciano A, LaMotte JE, Carroll AE. Caregiver experiences with accessing sickle cell care and the use of telemedicine. BMC Health Serv Res. 2022;22(1):239. Published 2022 Feb 22. doi:10.1186/s12913-022-07627-wen_US
dc.identifier.urihttps://hdl.handle.net/1805/32843
dc.language.isoen_USen_US
dc.publisherBMCen_US
dc.relation.isversionof10.1186/s12913-022-07627-wen_US
dc.relation.journalBMC Health Services Researchen_US
dc.rightsAttribution 4.0 International*
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/*
dc.sourcePMCen_US
dc.subjectAccess to health careen_US
dc.subjectPediatricen_US
dc.subjectSickle cell diseaseen_US
dc.subjectTelehealthen_US
dc.subjectTelemedicineen_US
dc.titleCaregiver experiences with accessing sickle cell care and the use of telemedicineen_US
dc.typeArticleen_US
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