A National Profile of Families and Caregivers of Children With Disabilities and/or Medical Complexity

Published:August 21, 2022DOI:



      Provide an up-to-date description of the well-being of families and caregivers of children with disability and medical complexity at the national level.


      We performed a secondary analysis of the 2016–2019 National Survey of Children's Health and divided the sample based on a child's disability and medical complexity status: children with no special health care needs (non-CSHCN), children with special health care needs (CSHCN), CSHCN with significant disabilities (CSHCN-SD), and children with medical complexity (CMC). Outcomes included survey items assessing 1) caregiver emotional well-being, 2) family functioning, and 3) economic adversity. We conducted multivariable logistic regression analyses to examine associations between child disability and medical complexity status with study outcomes.


      Among 131,774 survey responses, CSHCN-SD (weighted n = 4.2 million) and CMC (n =1.1 million) disproportionately reported adverse outcomes for every measure of well-being. Notably, caregivers of CSHCN-SD and CMC were more likely to report frequently feeling bothered (aOR 5.0 and 6.3, respectively) and angry (aOR 3.0 and 3.1) with their child than non-CSHCN caregivers. Families of CSHCN-SD and CMC had 40% lower odds of endorsing all aspects of family resilience and more likely to report three or more adverse childhood experiences (aOR 3.3 and 3.7) than non-CSHCN families. CSHCN-SD and CMC families were also more likely to experience difficulty covering basics (aOR, 2.6 and 3.3) and report caregivers changing jobs due to their child's care (aOR, 3.1 and 5.0).


      Development and testing of interventions specifically targeting the well-being of CSHCN-SD and CMC families and caregivers is needed.


      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 Academic Pediatrics
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Raise Family Caregiving Advisory Council
        Initial report to Congress.
        U.S. Department of Health and Human Services, Administration for Community Living, 2021
        • Barnert ES
        • Coller RJ
        • Nelson BB
        • et al.
        Key population health outcomes for children with medical complexity: a systematic review.
        Matern Child Health J. 2019; 23: 1167-1176
        • Simeonsson RJ
        • Leonardi M
        • Lollar D
        • et al.
        Applying the international classification of functioning, disability and health (ICF) to measure childhood disability.
        Disabil Rehabil. 2003; 25: 602-610
      1. Berry JG. What children with medical complexity, their families, and healthcare providers deserve from an ideal healthcare system. 2015. Available at: Accessed September 9, 2022.

        • Zablotsky B
        • Black LI
        • Maenner MJ
        • et al.
        Prevalence and trends of developmental disabilities among children in the United States: 2009–2017.
        Pediatrics. 2019; 144: e20190811
        • Yu JA
        • McKernan G
        • Hagerman T
        • et al.
        Identifying children with medical complexity from the National Survey of Children’s Health combined 2016-17 data set.
        Hosp Pediatr. 2021; 11: 192-197
        • Allshouse C
        • Comeau M
        • Rodgers R
        • et al.
        Families of children with medical complexity: a view from the front lines.
        Pediatrics. 2018; 141: S195-S201
        • Fayed N
        • Guttmann A
        • Chiu A
        • et al.
        Family-provider consensus outcomes for children with medical complexity.
        Dev Med Child Neurol. 2019; 61: 1093-1100
        • Coller RJ
        • Berry JG
        • Kuo DZ
        • et al.
        Health system research priorities for children and youth with special health care needs.
        Pediatrics. 2020; 145e20190673
        • Cohn LN
        • Pechlivanoglou P
        • Lee Y
        • et al.
        Health outcomes of parents of children with chronic illness: a systematic review and meta-analysis.
        J Pediatr. 2020; 218 (e162): 166-177
        • US Census Bureau
        2019 National Survey of Children's Health: Methodology Report.
        U.S. Census Bureau, Washington, DC2020
        • Bethell CD
        • Blumberg SJ
        • Stein REK
        • et al.
        Taking stock of the CSHCN screener: a review of common questions and current reflections.
        Acad Pediatr. 2015; 15: 165-176
        • Hagerman TK
        • Houtrow AJ.
        Variability in prevalence estimates of disability among children in the National Survey of Children’s Health.
        JAMA Pediatr. 2021; 175: 307-310
        • Cohen E
        • Kuo DZ
        • Agrawal R
        • et al.
        Children with medical complexity: an emerging population for clinical and research initiatives.
        Pediatrics. 2011; 127: 529-538
        • Bayer ND
        • Wang H
        • Yu JA
        • et al.
        A national mental health profile of parents of children with medical complexity.
        Pediatrics. 2021; e2020023358
        • Pickles DM
        • Lihn SL
        • Boat TF
        • et al.
        A roadmap to emotional health for children and families with chronic pediatric conditions.
        Pediatrics. February 2020; 145e20191324
        • Raina P
        • O'Donnell M
        • Schwellnus H
        • et al.
        Caregiving process and caregiver burden: conceptual models to guide research and practice.
        BMC Pediatr. 2004; 4: 1
        • Sahler OJZ
        • Dolgin MJ
        • Phipps S
        • et al.
        Specificity of problem-solving skills training in mothers of children newly diagnosed with cancer: results of a multisite randomized clinical trial.
        J Clin Oncol. 2013; 31: 1329-1335
        • Schulz R
        • Beach SR
        • Czaja SJ
        • et al.
        Family caregiving for older adults.
        Annu Rev Psychol. 2020; 71: 635-659
        • Eccleston C
        • Fisher E
        • Law E
        • et al.
        Psychological interventions for parents of children and adolescents with chronic illness.
        Cochrane Database Syst Rev. 2015; Cd009660
        • McClellan CB
        • Cohen LL.
        Family functioning in children with chronic illness compared with healthy controls: a critical review.
        J Pediatr. 2007; 150 (223.e221-222): 221-223
        • Herzer M
        • Godiwala N
        • Hommel KA
        • et al.
        Family functioning in the context of pediatric chronic conditions.
        J Develop Behav Pediatr. 2010; 31: 26-34
        • Bally JMG
        • Smith NR
        • Holtslander L
        • et al.
        A metasynthesis: uncovering what is known about the experiences of families with children who have life-limiting and life-threatening illnesses.
        J Pediatr Nurs. 2018; 38: 88-98
        • Yu JA
        • McKernan GP
        • Hagerman TK
        • et al.
        Most children with medical complexity do not receive care in well-functioning health care systems.
        Hosp Pediatr. 2020; (In-press)
        • Psihogios AM
        • Fellmeth H
        • Schwartz LA
        • Barakat LP.
        Family functioning and medical adherence across children and adolescents with chronic health conditions: a meta-analysis.
        J Pediatr Psychol. 2019; 44: 84-97
        • Mattson G
        • Kuo DZ.
        Psychosocial factors in children and youth with special health care needs and their families.
        Pediatrics. 2019; 143: e20183171
        • Kuhlthau K
        • Hill KS
        • Yucel R
        • Perrin JM.
        Financial burden for families of children with special health care needs.
        Matern Child Health J. 2005; 9: 207-218
        • Berry JG
        • Harris D
        • Coller RJ
        • et al.
        The interwoven nature of medical and social complexity in US children.
        JAMA Pediatr. 2020; 174: 891-893
        • Kuo DZ
        • Cohen E
        • Agrawal R
        • et al.
        A national profile of caregiver challenges among more medically complex children with special health care needs.
        Arch Pediatr Adolesc Med. 2011; 165: 1020-1026
        • Thomson J
        • Shah SS
        • Simmons JM
        • et al.
        Financial and social hardships in families of children with medical complexity.
        J Pediatr. 2016; 172 (e181): 187-193
        • Foster CC
        • Chorniy A
        • Kwon S
        • et al.
        Children with special health care needs and forgone family employment.
        Pediatrics. 2021; 148
        • Yu J
        • Houtrow AJ.
        Moving pediatric complex care forward: big data and national research collaborations.
        Pediatrics. 2021; 148e2021051833
        • Foster CC
        • Agrawal RK
        • Davis MM.
        Home health care for children with medical complexity: workforce gaps, policy, and future directions.
        Health Aff. 2019; 38: 987-993
        • Houtrow AJ
        • Carle A
        • Perrin JM
        • Stein REK.
        Children with special health care needs on Supplemental Security Income for disability have more health impacts and needs than other children with special health care needs on Medicaid.
        Acad Pediatr. 2020; 20: 258-266