Understanding caregiver burden with accessing sickle cell care in the Midwest and their perspective on telemedicine

BMC Health Services Research

Research

Seethal A. Jacob¹  Jillian Bouck²  Aaron E. Carroll²  Roua Daas²  Meghan Drayton Jackson³  Julia E. LaMotte³ 

[1] Center for Pediatric and Adolescent Comparative Effectiveness Research, Indiana University, 410 W. 10th Street, Suite 2000A, 46202, Indianapolis, IN, USA;Division of Pediatric Hematology Oncology, Department of Pediatrics, Riley Hospital for Children, 46202, Indianapolis, IN, USA;Indiana University School of Medicine, 46202, Indianapolis, IN, USA;Center for Pediatric and Adolescent Comparative Effectiveness Research, Indiana University, 410 W. 10th Street, Suite 2000A, 46202, Indianapolis, IN, USA;Indiana University School of Medicine, 46202, Indianapolis, IN, USA;Division of Pediatric Hematology Oncology, Department of Pediatrics, Riley Hospital for Children, 46202, Indianapolis, IN, USA;Indiana University School of Medicine, 46202, Indianapolis, IN, USA;

关键词: Telemedicine;    Telehealth;    Sickle cell disease;    Pediatric;    Access to Health Care;   

DOI  :  10.1186/s12913-023-09383-x

 received in 2022-12-16, accepted in 2023-04-10,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundSurvival for children with sickle cell disease (SCD) has improved significantly. However, patients with SCD still encounter several impediments to accessing adequate healthcare. Rural and medically underserved areas, such as parts of the Midwest, can exacerbate these barriers, separating children with SCD from subspecialists even further. Telemedicine has been a means to close these gaps in care for children with other special healthcare needs, but few studies have discussed how caregivers of children with SCD perceive its use.MethodsThe objective of this study is to understand the experiences of caregivers of pediatric SCD patients in a geographically diverse area in the Midwest in accessing care, and their perspectives of telemedicine. Caregivers of children with SCD completed an 88-item survey via a secured REDCap link either in-person or via secure text. Descriptive statistics (means, medians, ranges, frequencies) were performed for all responses. Univariate chi square tests were performed to analyze associations, particularly with telemedicine responses.ResultsThe survey was completed by 101 caregivers. Nearly 20% of families traveled more than 1 hour to reach the comprehensive SCD center. Other than their SCD provider, caregivers reported their child having at least 2 other healthcare providers. Most barriers caregivers identified were financial or resource based. Almost a quarter of caregivers expressed feeling as though these barriers impacted their and/or their child’s mental health. Ease of access to team members, as well as scheduling, were common facilitators of care cited by caregivers. The majority were willing to participate in telemedicine visits, regardless of how far they lived from the SCD center, though many noted aspects requiring adaptation.ConclusionThis cross-sectional study describes barriers to care experienced by caregivers of children with SCD, regardless of proximity to an SCD center, as well as caregiver perceptions of the usefulness and acceptability of telemedicine for SCD care.

【 授权许可】

CC BY   
© The Author(s) 2023

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