Patient/Family-Provider Communication Important in Sickle Cell Disease Care

By Leah Lawrence - Last Updated: November 28, 2022

An emphasis on patient/family-provider communication can help to improve quality of care in pediatric sickle cell disease (SCD), according to a recent study.

“Literature on patient/family-provider communication in SCD is scarce,” study researchers explained. “Given that patient/family-provider communication may be a key driver of health care quality, it is important to understand patient-centered communication [PCC] in the context of pediatric SCD.”

As part of a larger study, the researchers collected data from semi-structured interviews with SCD caregivers. The interviews covered topics including managing SCD and their interactions with their child’s medical team.

In all, the study included information from 17 caregivers (82% mothers and 94% Black) and 8 patients (aged 13-19) who were recruited from a pediatric hospital in the mid-Atlantic region of the United States.

Five themes were identified from the interview responses and these themes were consistent with the five functions of PCC: facilitate information exchange, enable patient/caregiver disease self-management, foster relationships, support decision making, and promote management of patient/caregiver emotions and uncertainty.

In the study sample, the importance of exchanging information was expressed during interviews as feeling encouraged to ask questions, having information needs met, and triadic communication among patient, caregiver, and provider. The idea of enabling self-management was identified as having the self-confidence in managing symptoms or treatment as a result of communication with providers.

Fostering relationships was also an important theme. The participants discussed aspects of the provider’s relationship with the family or patient, and expressed the importance of feeling understood by the provider or team.

Participants emphasized the importance of feeling heard in treatment and having the family’s point of view included.

Finally, managing uncertainty and emotions was also an important theme of the interview responses. This included cultural responsiveness and specific behaviors that providers use to show that they care. Positive interactions can reduce family/patient distress, support self-management efforts, and foster a positive and trusting relationship.

“These findings highlight the potential utility of training clinicians in use of PCC skills to enhance the quality of care delivered,” the researchers wrote. “Existing PCC training programs might be adapted and optimized for clinicians who serve patients with SCD by incorporating cultural humility perspectives to address inequities in delivery of high-quality care for this population across settings (i.e., emergency department, inpatient, and outpatient).”



Family-Centered Communication in Pediatric Sickle Cell Disease