Caregivers of pediatric patients with sickle cell disease (SCD) in a medically under-resourced area in the Midwest revealed challenges in accessing care.

Among the most commonly mentioned reasons were the distance to the subspecialty SCD center and the eventual need for transportation, financial concerns, missed days of work, and missed days of school of their children.

From the 16 caregivers interviewed in the study published BMC Health Services Research, 9 identified the lack of provider knowledge and comfort associated with SCD as a concern within the general community.

Besides the barriers to care, SCD caregivers discussed the burden and stress of having a child with SCD. Most (12/16) caregivers felt overwhelmed with the initial diagnosis and ongoing care. The intermittent, unpredictable nature of the disease and its complications and the sense of helplessness was pointed as reasons to fuel their stress.

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Five caregivers also mentioned feelings of guilt and personal responsibility for their child’s condition. “I was really sad because I know that he’s going to have to deal with it for the rest of his life, and there’s nothing that I can really do, and then I felt kind of responsible for it because I didn’t know that I had the trait, and I didn’t know that his father had the trait, so I kind of felt responsible . . . like it was my fault that my son has this disease,” a participant said.

According to most (14/16) caregivers, having subspecialists knowledgeable about SCD working as a team is more convenient and reduces the burden they experience. “Because hematology is not the only specialist we see . . . they try to make it a lot easier to not have to do the back and forth. So they try to combine appointments within the same day as other specialist . . . they make it a lot easier for me,” another participant said.

Prompt communication with hospital staff via phone/email and easy access to an SCD specialized team that could provide immediate answers/solutions to caregivers’ concerns are also important aspects.

Caregivers also identified telemedicine as a good alternative to overcome the barrier of distance/transportation. However, some referred to difficulties in using technologies. Moreover, the lack of a physical exam in telemedicine is a negative aspect for most caregivers (13/16).

Reference

Jacob 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. doi:10.1186/s12913-022-07627-w