Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2011 Nov;165(11):1020-6.
doi: 10.1001/archpediatrics.2011.172.

A national profile of caregiver challenges among more medically complex children with special health care needs

Dennis Z Kuo  1 , Eyal Cohen, Rishi Agrawal, Jay G Berry, Patrick H Casey
Affiliations

A national profile of caregiver challenges among more medically complex children with special health care needs

Dennis Z Kuo et al. Arch Pediatr Adolesc Med. 2011 Nov.

Abstract

Objectives: To profile the national prevalence of more medically complex children with special health care needs (CSHCN) and the diversity of caregiver challenges that their families confront.

Design: Secondary analysis of the 2005-2006 National Survey of Children With Special Health Care Needs (unweighted n = 40 723).

Setting: United States-based population.

Participants: National sample of CSHCN.

Main exposure: More complex CSHCN were defined by incorporating components of child health and family need, including medical technology dependence and care by 2 or more subspecialists.

Main outcome measures: Caregiver challenges were defined by family-reported care burden (including hours providing care coordination and home care), medical care use (on the basis of health care encounters in the last 12 months), and unmet needs (defined by 15 individual medical care needs and a single nonmedical service need).

Results: Among CSHCN, 3.2% (weighted n = 324 323) met criteria for more complex children, representing 0.4% of all children in the United States. Caregivers of more complex CSHCN reported a median of 2 (interquartile range, 1-6) hours per week on care coordination and 11 to 20 (interquartile range, 3->21) hours per week on direct home care. More than half (56.8%) reported financial problems, 54.1% reported that a family member stopped working because of the child's health, 48.8% reported at least 1 unmet medical service need, and 33.1% reported difficulty in accessing nonmedical services.

Conclusions: Extraordinary and diverse needs are common among family caregivers of more complex CSHCN. Enhanced care coordination support, respite care, and direct home care may begin to address the substantial economic burden and the multiple unmet needs that many of these families face.

PubMed Disclaimer

Figures

Figure 1
Figure 1
Study sample by criteria. All figures weighted unless indicated.
Figure 2
Figure 2
Parent-reported diagnoses by complexity (weighted n = 10,221,439).
See this image and copyright information in PMC

References

    1. Tanios AT, Lyle RE, Casey PH. ACH medical home program for special needs children. A new medical era. J Ark Med Soc. 2009 Jan;105(7):163–165. - PubMed
    1. Gordon JB, Colby HH, Bartelt T, Jablonski D, Krauthoefer ML, Havens P. A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs. Arch Pediatr Adolesc Med. 2007 Oct;161(10):937–944. - PubMed
    1. Kelly A, Golnik A, Cady R. A medical home center: specializing in the care of children with special health care needs of high intensity. Matern Child Health J. 2008 Sep;12(5):633–640. - PubMed
    1. Cohen E, Friedman JN, Mahant S, Adams S, Jovcevska V, Rosenbaum P. The impact of a complex care clinic in a children’s hospital. Child Care Health Dev. 2010 Mar 9;36(4):574–582. - PubMed
    1. Berry JG, Agrawal R, Kuo DZ, et al. Characteristics of Hospitalizations for Patients who Utilize a Structured Clinical-Care Program for Children with Medical Complexity. J Pediatr. 2011 epub 21 March 2011. - PMC - PubMed

Publication types