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Updated: Nov 21, 2025
A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Addressing unmet basic needs for children with sickle cell disease in the United States: clinic and staff
Stephanie Loo1, Annelise Brochier2, Mikayla Gordon Wexler2
1Department of Health Law, Policy and Management, Boston University School of Public Health, 715 Albany Street, Boston, MA, 02118, USA. ssloo@bu.edu.
Insights
Pediatric hematology clinic staff face barriers addressing basic needs for children with sickle cell disease (SCD). Organizational and systemic factors limit their ability to support families effectively.
Area of Science:
- Pediatric Hematology
- Implementation Science
- Social Determinants of Health (SDoH)
Background:
- Children with sickle cell disease (SCD) experience significant unmet basic needs.
- Understanding barriers and facilitators is crucial for effective support.
- Pediatric hematology clinic staff perspectives are vital for improving care.
Purpose of the Study:
- To assess pediatric hematology clinic staff perspectives on barriers and facilitators.
- To identify challenges in addressing unmet basic needs for children with SCD.
- To explore how clinics address adverse social determinants of health (SDoH).
Main Methods:
- Six focus groups conducted in urban pediatric hematology clinics.
- Utilized the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework.
- Employed a summative content analytical approach to identify themes.
Main Results:
- Families with children who have SCD face numerous unmet basic needs.
- Clinic staff recognize their role but face limitations.
- Staff ability to help is contingent on caregiver capacity and systemic factors.
- Organizational and systemic factors significantly impede staff's ability to address needs.
Conclusions:
- Findings highlight the need for systemic changes to support families.
- Urban pediatric hematology clinics require enhanced strategies for equitable support.
- Addressing adverse SDoH is critical for this vulnerable pediatric population.
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.
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