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Article
Nov 2011

A National Profile of Caregiver Challenges Among More Medically Complex Children With Special Health Care Needs

Author Affiliations

Author Affiliations: Center for Applied Research and Evaluation, Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock (Drs Kuo and Casey); Division of Pediatric Medicine, Department of Pediatrics, Hospital for Sick Children, University of Toronto, Toronto, Ontario, and CanChild Center for Childhood Disability Research, Hamilton, Ontario, Canada (Dr Cohen); Division of Hospital-Based Medicine, Department of Pediatrics, Children's Memorial Hospital, Feinberg School of Medicine, Northwestern University, and La Rabida Children's Hospital, Chicago, Illinois (Dr Agrawal); and Division of General Pediatrics, Children's Hospital Boston, Harvard Medical School, Boston, Massachusetts (Dr Berry).

Arch Pediatr Adolesc Med. 2011;165(11):1020-1026. doi:10.1001/archpediatrics.2011.172
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.

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