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Underrepresented Voices: Impacts of Social Determinants of Health on Type 1 Diabetes Family Management in Single-Parent, Black Families

  • Jennifer F. Morone
    Correspondence
    Address for correspondence: Jennifer F. Morone PhD, MA-ATR, RN, National Clinician Scholars Program, Yale University School of Medicine, 333 Cedar Street, SHM IE-66, P.O. Box 208088, New Haven, Connecticut 06510-8088, United States.
    Affiliations
    School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, United States

    National Clinician Scholars Program, Yale University School of Medicine, New Haven, Connecticut, United States

    Veterans Administration HSR&D Center for the Study of Healthcare Innovation, Implementation, & Policy, West Haven, Connecticut, United States
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  • Peter F. Cronholm
    Affiliations
    Department of Family Medicine and Community Health, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, United States

    Center for Public Health Initiatives, University of Pennsylvania, Philadelphia, Pennsylvania, United States

    Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, Pennsylvania, United States
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  • Anne M. Teitelman
    Affiliations
    School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, United States
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  • Colin P. Hawkes
    Affiliations
    Division of Diabetes and Endocrinology, Children’s Hospital of Pennsylvania, Philadelphia, Pennsylvania, United States

    Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, United States

    INFANT Centre, University College Cork, Cork, Ireland
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  • Terri H. Lipman
    Affiliations
    School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, United States

    Center for Public Health Initiatives, University of Pennsylvania, Philadelphia, Pennsylvania, United States

    Division of Diabetes and Endocrinology, Children’s Hospital of Pennsylvania, Philadelphia, Pennsylvania, United States
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      Abstract

      Objectives

      Social determinants of health (SDOH) impact families’ ability to manage chronic illnesses such as type 1 diabetes (T1D). Black, single parents have unique SDOH-related resource needs and concerns when caring for a child with a chronic illness, yet their voices are underrepresented in the pediatric T1D literature. The aim of this qualitative study was to identify and explore the SDOH that influence T1D management in Black, single-parent families.

      Methods

      In this 2-phase qualitative study we used content analysis to explore themes derived from 3 nominal group technique sessions and semistructured interviews, with 20 self-identified Black, single parents of a child with T1D.

      Results

      Parents encountered various SDOH-related issues that negatively influenced management of their children’s T1D. Six major themes emerged from the parent-generated list of SDOH-related barriers: 1) lack of parent and child emotional and physical support systems, 2) maintaining parent and child’s physical and mental health, 3) pain management with medication administration, 4) clinical team empathy, 5) provider communication, and 6) economic burden of food costs.

      Conclusions

      These exploratory findings contribute to the knowledge base required to guide development of culturally relevant, individual- and population-level interventions for racially and compositionally minority families, to increase health equity and address racial health disparities in T1D. Routine assessment of family social support context and resources, better integration of community-level social services into clinical health encounters and clinician bias and communication training are advised starting points to address the specific needs of racial and ethnic minority families experiencing the greatest social and clinical challenges.

      Résumé

      Objectifs

      Les déterminants sociaux de la santé (DSS) ont une incidence sur la capacité des familles de prendre en charge les maladies chroniques telles que le diabète de type 1 (DT1). Les parents monoparentaux noirs ont des préoccupations et des besoins particuliers en ressources liées aux DSS lorsqu’ils prennent soin d’un enfant atteint d’une maladie chronique, mais leurs voix sont sous-représentées dans la littérature sur le DT1 chez l’enfant et l’adolescent. L’objectif de la présente étude qualitative était de cerner et d’explorer les DSS qui influencent la prise en charge du DT1 dans les familles monoparentales noires.

      Méthodes

      Dans cette étude qualitative de phase 2, nous avons eu recours à l’analyse de contenu pour explorer les thèmes issus de 3 séances selon la technique du groupe nominal et d’entrevues semi-structurées auprès de 20 parents d’un enfant atteint du DT1 qui se déclaraient noirs et monoparentaux.

      Résultats

      Les parents ont rencontré de nombreux problèmes liés aux DSS qui ont influencé de façon négative la prise en charge du DT1 de leurs enfants. Six grands thèmes sont ressortis de la liste des obstacles liés aux DSS établie par les parents : 1) le manque de réseaux de soutien affectif et physique destinés au parent et à l’enfant; 2) le maintien de la santé physique et mentale du parent et de l’enfant; 3) la prise en charge de la douleur par l’administration de médicaments; 4) l’empathie de l’équipe clinique; 5) la communication des prestataires; 6) le fardeau économique du coût des aliments.

      Conclusions

      Les conclusions de cette recherche exploratoire contribuent à la base des connaissances nécessaires pour guider l’élaboration d’interventions populationnelles et individuelles pertinentes sur le plan culturel des familles des minorités raciales et structurelles afin d’augmenter l’équité en matière de santé et faire face aux disparités raciales en matière de santé lors de DT1. L’évaluation systématique du contexte et des ressources de soutien social à la famille, la meilleure intégration des services sociaux communautaires aux consultations cliniques, les préjugés des cliniciens et la formation à la communication sont les points de départ conseillés pour répondre aux besoins particuliers des familles des minorités raciales et ethniques qui subissent les plus grands enjeux sociaux et cliniques.

      Keywords

      Mots clés

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