Staff Perspectives Show Pediatric Sickle Cell Clinics Lack Support, Resources

October 20, 2020
Jonathan Alicea

A common theme among clinical staff focus groups was the pervasiveness of systemic and social barriers to addressing basic needs in children with sickle cell disease.

Pediatric patients with sickle cell disease are a population generally affected by healthcare inequity and barriers to basic needs—such as food, housing, and utilities insecurities.

Findings from a new study underscored the pervasiveness of this issue among families of children with sickle cell disease. Furthermore, the study reported that staff members from urban pediatric hematology clinics recognized their considerable role in addressing these patient needs, yet resources and systemic support are still limited.

Stephanie Loo, MSc, and colleagues at Boston University School of Public Health and Boston Medical Center, held 6 focus groups in 4 New England clinics in order to assess staff perspectives on barriers and facilitators in addressing unmet basic needs for children with sickle cell disease. These focus groups were conducted over about a month and included a total number of 46 participants.

Up to 89% of participants were female, 37% were aged 45-54 years, and 84% were Caucasian (with 84% being non-Latino). Participants included nurses, medical providers (physicians, nurse practitioners, and physician assistants), psychosocial providers (psychologists and social workers), pediatric hematology research staff, and clinic support staff.

The participating clinics served on average 220 patients from rural and to urban to populations.

Although each clinic had either 1 or 2 dedicated social workers who conducted standardized psychosocial assessments with their patients, there was no systemic approach for identifying and addressing unmet basic needs across the clinics.

For the focus groups, Loo and colleagues developed questions to align with the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) implementation science framework. Their particular domains of focus were on context, recipient, and how clinics address adverse social determinants of health (SDoH) in their patient populations.

The investigators were interested in exploring the staff’s past experiences and current practices for addressing unmet basic needs as well as the contextual factors that shape their current practices and beliefs at the clinic-, organization-, and system-level.

Thus, the results revealed that while staff recognized significant unmet basic needs among their sickle cell disease patients, there were nonetheless limitations in their capacity to address these needs while fulfilling clinical responsibilities.

According to staff beliefs, there were systemic factors beyond their control that hindered their ability to close this needs gap. These factors were pervasive at the family, clinic, and societal level.

Thus, there was acknowledgement among the focus groups that change at the clinic-and organizational-level is warranted.

Another concern was the under-resourcing of medical clinics with underserved populations. Furthermore, the investigators reported a frustration among staff regarding the unequal allocation of resources across subspecialty clinics within their organizations.

For example, they especially noted a discrepancy between pediatric oncology services and the resource-limited sickle cell services.

“In order to effectively care for patients with SCD and based on our focus groups with staff, these clinics should be equipped to address unmet basic needs over and above patients’ medical concerns,” Loo and colleagues wrote.

They acknowledged the implications of their findings for pediatric hematology clinics’ efforts to offer more equitable support social care — which is integral to health outcomes.

“This will likely require acknowledging the inequitable systems within which SCD clinics operate, and implementing tools and partnerships to systematically assess and address unmet basic needs,” the investigators unconcluded.

The study, “Addressing Unmet Basic Needs for Children with Sickle Cell Disease: Clinic and Staff Perspectives,” was published online in Research Square.