Addressing unmet basic needs for children with sickle cell disease in the United States: clinic and staff perspectives

BACKGROUND: The purpose of this study was to assess pediatric hematology clinic staff’s perspectives regarding barriers and facilitators in addressing unmet basic needs for children with sickle cell disease (SCD). METHODOLOGY: Six focus groups were held at four urban pediatric hematology clinics in the Northeastern region of the United States from November to December 2019. Discussion questions were developed to align with the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) implementation science framework, focusing on the domains of context and recipient and how clinics address adverse social determinants of health (SDoH) in their patient populations. A summative content analytical approach was taken to identify major themes in the data. RESULTS: We discerned the following themes: (1) families of children with SCD experience numerous unmet basic needs; (2) clinic staff believed they had a role to play in addressing these unmet basic needs; (3) staff felt their ability to address families’ unmet basic needs depended upon caregivers’ capacity to act on staff’s recommendations; and (4) clinic staff’s ability to address these needs was limited by organizational and systemic factors beyond their control. CONCLUSIONS: These findings have important implications for how best to address adverse SDoH for this vulnerable pediatric population so that urban-based pediatric hematology clinics can more equitably support families. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-020-06055-y.