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

Seethal A Jacob,Julia E Lamotte,Roua Daas,Anna Feliciano,Aaron E Carroll

doi:10.1186/s12913-022-07627-w

Abstract

BackgroundSickle 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.MethodsThis 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.ResultsResearchers 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.ConclusionThis 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.

Highlights

Sickle cell disease (SCD) is the most common inherited hematologic disease in the world, disproportionately affecting African Americans in the United States [1]
This study aims to increase the understanding of both facilitators and barriers to care, as well as perceptions of telemedicine by caregivers of pediatric SCD patients in a medically underresourced area in the Midwest
Participants/procedure Caregivers of pediatric patients with SCD seen at Riley Hospital for Children in Indianapolis, Indiana and live greater than 60 minutes from the hospital were contacted by the research team via phone or email

Summary

Introduction

Sickle cell disease (SCD) is the most common inherited hematologic disease in the world, disproportionately affecting African Americans in the United States [1]. Improvements in preventative therapies have increased the life span for patients with SCD, with more than 93% of children with. Despite the complexity of care required by SCD patients, many barriers prevent equitable access to healthcare [1, 8, 9]. Children with SCD experience longer than average emergency department (ED) wait times, difficulty with transportation, and insufficient availability of primary care providers [10]. A multitude of barriers prevent SCD patients from receiving adequate healthcare, including difficulties with transportation and lack of provider knowledge about disease sequelae. 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. Few studies have established acceptability of telemedicine among caregivers and patients with SCD

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Discussion

Conclusion