A new qualitative study has revealed that basic needs and day-to-day conditions may undermine parental efforts to effectively treat and manage pediatric sickle cell disease (SCD), specifically, sickle cell anemia (SCA).
The study, published in Pediatric Blood and Cancer, is part of a larger study on the processes linking social determinants of health (SDoH) interventions in the context of pediatric hematology.
“This qualitative study focused on children with SCA and aimed to clarify (a) the processes through which pediatric SCA disease management and SDoH interact, (b) how parents/caregivers manage these simultaneous demands, and (c) ways to mitigate the deleterious effects of adverse SDoH on SCA management,” the authors wrote. “A better understanding of the processes linking SCA and SDoH will inform policies and interventions to address SDoH and promote SCA management.”
The research team recruited 27 parents and caregivers of children aged 0 to 12 years with SCA from two hematology departments at children’s hospitals in the United States between March 2020 and January 2021. Sociodemographic and SCA-related data on the participants were captured via a background survey.
Read more about SCD epidemiology
Semistructured interviews were conducted and quantitative measures of unmet basic needs were obtained from the Children’s HealthWatch questionnaire. The interviews included topics such as treatments and treatment barriers, as well as social environment aspects and how these aspects affected SCA management.
The results revealed important bidirectional links between the challenges of managing and treating SCA and being able to meet basic needs for food, housing, and energy security. In other words, managing SCA impedes parents’ ability to meet their family’s basic needs, and meeting their basic needs limits parents’ ability to effectively manage SCA.
The authors conclude that parents and caregivers are faced with difficult choices in these contexts and that the development of family-centered interventions to improve living conditions and access to treatment could improve outcomes.
Long KA, Blakey AO, Amaro CM, et al. Bidirectional processes linking social determinants of health and pediatric sickle cell anemia management: a qualitative study. Pediatr Blood Cancer. Published online July 20, 2023. doi.10.1002/pbc.30539