ABSTRACT
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.
KEY WORDS
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 accessOne-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:
Subscribe to Journal of Pediatric Health CareAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Families of children with medical complexity: A view from the front lines.Pediatrics. 2018; 141: S195-S201
- 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
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. https://www.cdc.gov/healthyschools/wscc/wsccmodel_update_508tagged.pdf
- Preparing families to care for ventilated infants at home.Seminars in Fetal and Neonatal Medicine. 2019; 24101042
- Hospital utilization and characteristics of patients experiencing recurrent readmissions within children's hospitals.Journal of the American Medical Association. 2011; 305: 682-690
- The social determinants of health: Coming of age.Annual Review of Public Health. 2011; 32: 381-398
- 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
- Childhood and society.2nd ed. W. W. Norton & Company, 1963
- Housing need among children with medical complexity: A cross-sectional descriptive study of three populations.Academic Pediatrics. 2022; 22: 900-909
- School outcomes of children with special health care needs.Pediatrics. 2011; 128: 303-312
- Home health care for children with medical complexity: Workforce gaps, policy, and future directions.Health Affairs (Project Hope). 2019; 38: 987-993https://doi.org/10.1377/hlthaff.2018.05531
- 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
- Social determinants of health and emergency and hospital use by children with chronic disease.Hospital Pediatrics. 2020; 10: 471-480https://doi.org/10.1542/hpeds.2019-0248
- A description of children dependent on long term ventilation via tracheostomy and their hospital resource use.Journal of Pediatric Nursing. 2021; 61: 96-101
- 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
- Social determinants of health needs and pediatric health care use.Journal of Pediatrics. 2021; 238 (e1): 275-281
Healthy People 2030. (n.d.). Social determinants of health. https://health.gov/healthypeople/objectives-and-data/social-determinants-health
- Priorities for safer in-person school for children with medical complexity during COVID-19.Pediatrics. 2022; 149e2021054434
- Research on family health and children and youth with special health care needs.Academic Pediatrics. 2022; 22: S22-S27
- Inequities in health care needs for children with medical complexity.Health Affairs. 2014; 33: 2190-2198
- The relationship of parental health literacy to health outcomes of children with medical complexity.Journal of Pediatric Nursing. 2021; 60: 65-70
- Prevalence of children with medical complexity and associations with health care utilization and in-hospital mortality.JAMA Pediatrics. 2022; 176e220687
- 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
- The impact of technology dependence on children and their families.Journal of Pediatric Health Care. 2013; 27: 451-459
- Critical connections: Health and academics.Journal of School Health. 2015; 85: 740-758
- Improving the quality of home health care for children with medical complexity.Academic Pediatrics. 2017; 17: 665-671
National Survey of Children's Health. (2020). Children with Special Health Care Needs: NSCH Data Brief 2020. https://mchb.hrsa.gov/data/national-surveys
National Survey of Children's Health. (2022). Children with Special Health Care Needs: NSCH Data Brief 2022. https://mchb.hrsa.gov/data/national-surveys
- Children with special needs: Social determinants of health and care coordination.Clinical Pediatrics. 2020; 59: 1161-1168https://doi.org/10.1177/0009922820941206
- Normalization in families raising a child who is medically fragile/technology dependent and developmentally delayed.Qualitative Health Research. 2005; 15: 807-820
- Screening children for social determinants of health: A systematic review.Pediatrics. 2019; 144e20191622https://doi.org/10.1542/peds.2019-1622
- Defining technology dependence in children and adolescents.Western Journal of Nursing Research. 2015; 37: 634-651https://doi.org/10.1177/0193945914526002
- Understanding the health care utilization of children who require medical technology: A descriptive study of children who require tracheostomies.Applied Nursing Research. 2017; 34: 62-65https://doi.org/10.1016/j.apnr.2017.02.017
- Financial and social hardships in families of children with medical complexity.Journal of Pediatrics. 2016; 172 (e1): 187-193https://doi.org/10.1016/j.jpeds.2016.01.049
- Resourcefulness intervention efficacy for parent caregivers of technology-dependent children: A randomized trial.Western Journal of Nursing Research. 2022; 44: 296-306
- Assessing and addressing social determinants of health among children and youth with special health care needs.Academic Pediatrics. 2022; 22: S28-S33https://doi.org/10.1016/j.acap.2021.07.006
- Language matters: Identifying medically complex children in foster care.Pediatrics. 2017; 140e20163692
Biography
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.
Biography
Regena Spratling, Professor, School of Nursing, Byrdine F. Lewis College of Nursing and Health Professions, Georgia State University, Atlanta, GA.
Article info
Publication history
Published online: November 30, 2022
Publication stage
In Press Corrected ProofFootnotes
Conflicts of interest: None to report.
Identification
Copyright
Copyright © 2022 by the National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.
