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

Abstract

Background 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.

Caregivers’ experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain

“…Formal support is essential by creating organizations or social communities that can help to provide social, emotional, and financial support to families with an adolescent with SCD [ 4 , 23 , 35 , 41 ]. A recent study suggests that telemedicine was a useful tool to enhance access to service and shared caregivers’ experiences with children with SCD following the pandemic of COVID-19 [ 48 ].…”

Telemedicine in sickle cell disease: Patient, parent, and provider perspectives

“…The predominance of patients with SCD in the United States are Black and structural racism has been identified as a barrier to accessing health care due to adverse social experiences. Families with SCD have also reported lack of transportation, limited providers with sickle cell expertise and funding for research and preventive care, which further contributes to limited access to health care 8,9 . Furthermore, technological barriers and challenges may contribute to difficulty accessing care even by telemedicine and may possibly reduce satisfaction of care for some patients.…”

“…Lack of knowledge and comfort with telemedicine technology also needs to be addressed. There are only a few studies examining the impact of telemedicine on patients with SCD, 8–10 and it is not known if increased reliance on telemedicine technology may further highlight existing vulnerabilities and widening disparities 11 …”

“…Adult participants also described the importance of continuing to have the option for in‐person visits and the need for in‐person visits for physical evaluations 10 . Indeed, the management of SCD involves frequent visits for health maintenance and postdischarge follow‐up 9 . However, youth and their caregiver's experience with telemedicine has not been fully explored in pediatric SCD.…”

“…Families with SCD have also reported lack of transportation, limited providers with sickle cell expertise and funding for research and preventive care, which further contributes to limited access to health care. 8,9 Furthermore, technological barriers and challenges may contribute to difficulty accessing care even by telemedicine and may possibly reduce satisfaction of care for some patients. Some patients have been left behind in this rapid switch to video-based care, potentially worsening healthcare inequities, particularly for those without access to technology.…”