JOPHON NCPD (2022 Jul/Aug) - Barriers and Facilitators to Chronic Red Cell Transfusion Therapy in Pediatric Sickle Cell Anemia-Barriers and Facilitators to Chronic Red Cell Transfusion Therapy in Pediatric Sickle Cell Anemia

Barriers and Facilitators to Chronic Red Cell Transfusion Therapy in Pediatric Sickle Cell Anemia

Pdf Summary

This qualitative study examined multilevel barriers and facilitators to chronic red cell transfusion (CRCT) therapy for children with sickle cell anemia (SCA), a key disease-modifying treatment recommended especially for primary and secondary stroke prevention. Using the Multilevel Ecological Model of Health, researchers conducted semi-structured key informant interviews (2018–2019) with 26 caregivers and 25 health care providers across the United States. Directed content analysis and constant comparison identified themes until saturation was reached (51 interviews total).<br /><br />Overall, 10 barrier themes and 10 facilitator themes emerged, most commonly at the patient and organizational levels. Major patient-level barriers reported by caregivers and providers included logistical challenges (time-intensive visits, transportation, missed work/school, childcare, parking), difficulties obtaining and maintaining venous access (painful or repeated IV attempts; port maintenance), and transfusion complications such as reactions and issues related to alloimmunization (providers emphasized difficulty sourcing compatible blood). Providers uniquely highlighted iron overload and challenges with adherence to chelation therapy, as well as family engagement challenges (difficulty achieving “buy-in,” particularly when children feel well or when abnormal TCD/MRI findings drive recommendations). Caregivers also described fear and trepidation about transfusions, including concerns about blood safety.<br /><br />Key facilitators included strong nursing and staff support (technical skill, familiarity, education, coordination), provider engagement and preparation (trust, continuity, guideline knowledge), and organizational supports that improved the child/family experience (e.g., Child Life, activities during long visits). Providers emphasized institutional resources such as transfusion medicine expertise, efficient lab systems, adequate infusion capacity, and strong blood bank coordination/access to blood. At the socioeconomic/policy level, no barriers were reported, but logistical help and social resources (transportation assistance, reminder calls, flexible workplaces/FMLA, home lab draws, gas cards) facilitated adherence.<br /><br />The findings underscore that improving CRCT requires coordinated interventions spanning patient education, supportive clinical relationships, and substantial organizational infrastructure.

Keywords

chronic red cell transfusion

sickle cell anemia

stroke prevention

multilevel barriers and facilitators

qualitative interviews

caregivers and healthcare providers

venous access challenges

alloimmunization and compatible blood

iron overload and chelation adherence

organizational support and nursing care