Examining Children With Complex Care and Technology Needs in the Context of Social Determinants of Health

Published:November 30, 2022DOI:


      Children with complex care and technology needs require daily, intensive care from family caregivers. These children are understudied, particularly in relation to the social determinants of health (SDOH) that affect their health, well-being, and quality of life. This paper examines the salient research on SDOH among this population, focusing on the Healthy People 2030 domains. Gaps in the research are identified and recommendations for future research, practice, policy, and education are presented. Pediatric nurses, advanced practice nurses, and other health care provider teams that care for these children and families can improve their health by examining and addressing SDOH.


      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Journal of Pediatric Health Care
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Allshouse C.
        • Comeau M.
        • Rodgers R.
        • Wells N.
        Families of children with medical complexity: A view from the front lines.
        Pediatrics. 2018; 141: S195-S201
        • Anderson L.S.
        Mothers of children with special health care needs: Documenting the experience of their children's care in the school setting.
        Journal of School Nursing. 2009; 25: 342-351
      1. Association for Supervision and Curriculum Development. & Centers for Disease Control and Prevention. (2014). Whole School, Whole Community, Whole Child: A collaborative approach to learning and health.

        • Benscoter D.
        • Borschuk A.
        • Hart C.
        • Voos K.
        Preparing families to care for ventilated infants at home.
        Seminars in Fetal and Neonatal Medicine. 2019; 24101042
        • Berry J.G.
        • Hall D.E.
        • Kuo D.Z.
        • Cohen E.
        • Agrawal R.
        • Feudtner C.
        • Hall M.
        • Kueser J.
        • Kaplan W.
        • Neff J.
        Hospital utilization and characteristics of patients experiencing recurrent readmissions within children's hospitals.
        Journal of the American Medical Association. 2011; 305: 682-690
        • Braveman P.
        • Egerter S.
        • Williams D.R.
        The social determinants of health: Coming of age.
        Annual Review of Public Health. 2011; 32: 381-398
        • Deatrick J.A.
        Where is “family” in the social determinants of health? Implications for family nursing practice, research, education, and policy.
        Journal of Family Nursing. 2017; 23: 423-433
        • Erikson E.
        Childhood and society.
        2nd ed. W. W. Norton & Company, 1963
        • Esser K.
        • Moore C.
        • Hounsell K.G.
        • Davis A.
        • Sunderji A.
        • Shulman R.
        • Maguire B.
        • Cohen E.
        • Orkin J.
        Housing need among children with medical complexity: A cross-sectional descriptive study of three populations.
        Academic Pediatrics. 2022; 22: 900-909
        • Forrest C.B.
        • Bevans K.B.
        • Riley A.W.
        • Crespo R.
        • Louis T.A.
        School outcomes of children with special health care needs.
        Pediatrics. 2011; 128: 303-312
        • Foster C.C.
        • Agrawal R.K.
        • Davis M.M.
        Home health care for children with medical complexity: Workforce gaps, policy, and future directions.
        Health Affairs (Project Hope). 2019; 38: 987-993
        • Foster C.C.
        • Shaunfield S.
        • Black L.E.
        • Labellarte P.Z.
        • Davis M.M.
        Improving support for care at home: Parental needs and preferences when caring for children with medical complexity.
        Journal of Pediatric Health Care. 2022; 36: 154-164
        • Foster C.C.
        • Simon T.D.
        • Qu P.
        • Holmes P.
        • Chang J.K.
        • Ramos J.L.
        • Koutlas A.
        • Rivara F.P.
        • Melzer S.M.
        • Mangione-Smith R.
        Social determinants of health and emergency and hospital use by children with chronic disease.
        Hospital Pediatrics. 2020; 10: 471-480
        • Giambra B.K.
        • Mangeot C.
        • Benscoter D.T.
        • Britto M.T.
        A description of children dependent on long term ventilation via tracheostomy and their hospital resource use.
        Journal of Pediatric Nursing. 2021; 61: 96-101
        • Hamilton H.
        • West A.N.
        • Ammar N.
        • Chinthala L.
        • Gunturkun F.
        • Jones T.
        • Shaban-Nejad A.
        • Shah S.H.
        Analyzing relationships between economic and neighborhood-related social determinants of health and intensive care unit length of stay for critically ill children with medical complexity presenting with severe sepsis.
        Frontiers in Public Health. 2022; 10789999
        • Hardy R.
        • Boch S.
        • Keedy H.
        • Chisolm D.
        Social determinants of health needs and pediatric health care use.
        Journal of Pediatrics. 2021; 238 (e1): 275-281
      2. Healthy People 2030. (n.d.). Social determinants of health.

        • Kelly M.M.
        • DeMuri G.P.
        • Barton H.J.
        • Nacht C.L.
        • Butteris S.M.
        • Katz B.
        • Burns R.
        • Koval S.
        • Ehlenbach M.L.
        • Stanley J.
        • Wald E.R.
        • Warner G.
        • Wilson L.F.
        • Myrah G.E.
        • Parker D.E.
        • Coller R.J.
        Priorities for safer in-person school for children with medical complexity during COVID-19.
        Pediatrics. 2022; 149e2021054434
        • Kuhlthau K.A.
        • Ames S.G.
        • Ware A.
        • Hoover C.G.
        • Wells N.
        • Shelton C.
        Research on family health and children and youth with special health care needs.
        Academic Pediatrics. 2022; 22: S22-S27
        • Kuo D.Z.
        • Goudie A.
        • Cohen E.
        • Houtrow A.
        • Agrawal R.
        • Carle A.C.
        • Wells N.
        Inequities in health care needs for children with medical complexity.
        Health Affairs. 2014; 33: 2190-2198
        • Lawrence P.R.
        • Feinberg I.
        • Spratling R.
        The relationship of parental health literacy to health outcomes of children with medical complexity.
        Journal of Pediatric Nursing. 2021; 60: 65-70
        • Leyenaar J.K.
        • Schaefer A.P.
        • Freyleue S.D.
        • Austin A.M.
        • Simon T.D.
        • Van Cleave J.
        • Moen E.L.
        • O'Malley A.J.
        • Goodman D.C
        Prevalence of children with medical complexity and associations with health care utilization and in-hospital mortality.
        JAMA Pediatrics. 2022; 176e220687
        • Martin M.A.
        • Caskey R.
        • Glassgow A.E.
        • Pappalardo A.A.
        • Hsu L.L.
        • Jang J.
        • Basu S.
        • Minier M.
        • Fox K.
        • Voorhees B.V.
        Trends in school attendance for low-income children with chronic health conditions: Results from a randomized controlled trial.
        Journal of School Health. 2021; 91: 187-194
        • Mesman G.R.
        • Kuo D.Z.
        • Carroll J.L.
        • Ward W.L.
        The impact of technology dependence on children and their families.
        Journal of Pediatric Health Care. 2013; 27: 451-459
        • Michael S.L.
        • Merlo C.L.
        • Basch C.E.
        • Wentzel K.R.
        • Wechsler H.
        Critical connections: Health and academics.
        Journal of School Health. 2015; 85: 740-758
        • Nageswaran S.
        • Golden S.L.
        Improving the quality of home health care for children with medical complexity.
        Academic Pediatrics. 2017; 17: 665-671
      3. National Survey of Children's Health. (2020). Children with Special Health Care Needs: NSCH Data Brief 2020.

      4. National Survey of Children's Health. (2022). Children with Special Health Care Needs: NSCH Data Brief 2022.

        • Pankewicz A.
        • Davis R.K.
        • Kim J.
        • Antonelli R.
        • Rosenberg H.
        • Berhane Z.
        • Turchi R.M.
        Children with special needs: Social determinants of health and care coordination.
        Clinical Pediatrics. 2020; 59: 1161-1168
        • Rehm R.S.
        • Bradley J.F.
        Normalization in families raising a child who is medically fragile/technology dependent and developmentally delayed.
        Qualitative Health Research. 2005; 15: 807-820
        • Sokol R.
        • Austin A.
        • Chandler C.
        • Byrum E.
        • Bousquette J.
        • Lancaster C.
        • Doss G.
        • Dotson A.
        • Urbaeva V.
        • Singichetti B.
        • Brevard K.
        • Wright S.T.
        • Lanier P.
        • Shanahan M.
        Screening children for social determinants of health: A systematic review.
        Pediatrics. 2019; 144e20191622
        • Spratling R.
        Defining technology dependence in children and adolescents.
        Western Journal of Nursing Research. 2015; 37: 634-651
        • Spratling R.
        Understanding the health care utilization of children who require medical technology: A descriptive study of children who require tracheostomies.
        Applied Nursing Research. 2017; 34: 62-65
        • Thomson J.
        • Shah S.S.
        • Simmons J.M.
        • Sauers-Ford H.S.
        • Brunswick S.
        • Hall D.
        • Kahn R.S.
        • Beck A.F.
        Financial and social hardships in families of children with medical complexity.
        Journal of Pediatrics. 2016; 172 (e1): 187-193
        • Toly V.B.
        • Zauszniewski J.A.
        • Yu J.
        • Sattar A.
        • Rusincovitch B.
        • Musil C.M.
        Resourcefulness intervention efficacy for parent caregivers of technology-dependent children: A randomized trial.
        Western Journal of Nursing Research. 2022; 44: 296-306
        • Van Cleave J.
        • Taft K.
        • Ware A.
        • Stille C.
        Assessing and addressing social determinants of health among children and youth with special health care needs.
        Academic Pediatrics. 2022; 22: S28-S33
        • Williams E.P.
        • Seltzer R.R.
        • Boss R.D.
        Language matters: Identifying medically complex children in foster care.
        Pediatrics. 2017; 140e20163692


      Barbara K. Giambra, Assistant Professor, Division of Research in Patient Services, Nursing, Department of Patient Services, and Volunteer Assistant Professor, James M. Anderson Center, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, and Assistant Professor-Research Affiliate, College of Nursing, University of Cincinnati, Cincinnati, OH.


      Regena Spratling, Professor, School of Nursing, Byrdine F. Lewis College of Nursing and Health Professions, Georgia State University, Atlanta, GA.