Evidence map›Paper›PMID 37470711›Full record

ArticlePediatric blood & cancer2023

Bidirectional processes linking social determinants of health and pediatric sickle cell anemia management: A qualitative study.

Kristin A Long, Ariel O Blakey, Christina M Amaro, Jenna S Eilenberg, Annelise Brochier, Arvin Garg, Mari-Lynn Drainoni, Farzana Pashankar, Erica B Esrick, Patricia L Kavanagh

Abstract read
In one paragraph

Article in Pediatric blood & cancer, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Kristin A LongDepartment of Psychological and Brain Sciences, Boston University, Boston, Massachusetts, USA.ORCID 0000-0001-8486-2545
Ariel O BlakeyDepartment of Psychological and Brain Sciences, Boston University, Boston, Massachusetts, USA.
Christina M AmaroDepartment of Psychological and Brain Sciences, Boston University, Boston, Massachusetts, USA.
Jenna S EilenbergDepartment of Psychological and Brain Sciences, Boston University, Boston, Massachusetts, USA.
Annelise BrochierDepartment of Pediatrics, Boston Medical Center, Boston, Massachusetts, USA.ORCID 0000-0002-1785-0277
Arvin GargChild Health Equity Center, Department of Pediatrics, UMass Memorial Children's Medical Center, University of Massachusetts Chan Medical School, Worcester, Massachusetts, USA.
Mari-Lynn DrainoniSection of Infectious Diseases, Department of Medicine, Boston University Chobanian & Avedesian School of Medicine/Boston Medical Center, Boston, Massachusetts, USA.
Farzana PashankarDepartment of Pediatrics, Yale University School of Medicine, New Haven, Connecticut, USA.ORCID 0000-0003-2883-0957
Erica B EsrickDepartment of Pediatrics, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts, USA.
Patricia L KavanaghDepartment of Pediatrics, Boston Medical Center, Boston, Massachusetts, USA.

Funding

Yale Clinical and Translational Science Award (U Component)UL1TR001863 · NCATS · YALE UNIVERSITY · PI John H. Krystal, LUCILA OHNO-MACHADO · 2016 to 2026
$102.9M
Understanding and Addressing the Social Determinants of Health for Families of Children with Sickle Cell Anemia within Pediatric Hematology Diversity SupplementR01HL141774 · NHLBI · BOSTON MEDICAL CENTER · PI GARG, ARVIN, KAVANAGH, PATRICIA L · 2019 to 2022
$3.7M
NCATS NIH HHS UL1 TR001863NHLBI NIH HHS R01 HL141774
6 · The paper itself

Abstract

backgroundChildren with sickle cell anemia (SCA) have substantial medical needs and more unmet basic needs than children with other medical conditions. Despite a recent focus on social determinants of health (SDoH), there remains an incomplete understanding of the processes linking SDoH and disease management, particularly for youth with SCA. This study elucidated these processes and identified ways to mitigate deleterious effects of adverse SDoH on SCA management.

methodsParents/primary caregivers (N = 27) of children with SCA (≤12 years old) participated in semi-structured interviews regarding SCA management and SDoH and completed quantitative measures of basic needs. Qualitative data were systematically coded and analyzed using applied thematic analysis. Quantitative data were presented descriptively.

resultsThree qualitative themes were identified. First, SCA management is bidirectionally linked with the social environment, whereby challenges of SCA management can hinder basic needs from being met, and unmet basic needs and financial hardship hinder SCA management. Second, due to limited resources, parents/caregivers are faced with difficult choices between prioritizing basic needs versus SCA management. Third, addressing material, emotional, and informational needs may improve SCA management. Quantitatively, 73% of families endorsed ≥1 basic need, including food insecurity (42%), housing instability (62%), and/or energy insecurity 19% (vs. 20%).

conclusionDespite documented associations, there remains a poor understanding of the processes linking SDoH and health. Findings underscore how day-to-day conditions undermine the management of SCA treatments, symptoms, and complications, limiting treatment effectiveness. Understanding these processes may inform family-centered, health equity interventions and policies to improve living conditions, disease management, and health outcomes.

Indexed as

Anemia, Sickle CellSocial Determinants of HealthAdolescentChildHumansParentsQualitative ResearchSurveys and Questionnairesbasic needsfamilypediatricsickle cell diseasesocial determinants of health

Identifiers

PMID37470711
PMCPMC10619973

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.