Financial and nonfinancial burden among families of CSHCN: Changes between 2001 and 2009-2010

Academic Pediatrics

Volumn 14, Issue 1, 2014, Pages 92-100

  Ghandour, Reem M ^a   Hirai, Ashley H ^a   Blumberg, Stephen J ^b   Strickland, Bonnie B ^c   Kogan, Michael D ^a  

^a U S DEPARTMENT OF HEALTH AND HUMAN SERVICES   (United States)

^b CENTERS FOR DISEASE CONTROL AND PREVENTION   (United States)

^c HEALTH RESOURCES AND SERVICES ADMINISTRATION   (United States)

Author keywords

children with special health care needs; family burden; financial burden; trends

Indexed keywords

ADOLESCENT; ARTICLE; CHILD; CHILDHOOD DISEASE; CHILDREN WITH SPECIAL HEALTH CARE NEED; EMPLOYMENT; ETHNIC DIFFERENCE; FEMALE; FINANCIAL DEFICIT; HEALTH CARE COST; HUMAN; INCOME; INFANT; MAJOR CLINICAL STUDY; MALE; NEWBORN; PRESCHOOL CHILD; PREVALENCE; RACE DIFFERENCE; SCHOOL CHILD; CHRONIC DISEASE; COST OF ILLNESS; ECONOMICS; FAMILY HEALTH; GIFTED CHILD; HANDICAPPED CHILD; NEEDS ASSESSMENT; UNITED STATES;

ADOLESCENT; CHILD; CHILD, EXCEPTIONAL; CHILD, PRESCHOOL; CHRONIC DISEASE; COST OF ILLNESS; DISABLED CHILDREN; FAMILY HEALTH; FEMALE; HUMANS; INFANT; MALE; NEEDS ASSESSMENT; UNITED STATES;

EID: 84891451049     PISSN: 18762859     EISSN: 18762867     Source Type: Journal    
DOI: 10.1016/j.acap.2013.10.001     Document Type: Article

References (35)

1. P. Karaca-Mandic, S.J. Yoo, and B.D. Sommers Recession led to a decline in out-of-pocket spending for children with special health care needs Health Aff (Millwood) 32 2013 1054 1062
2. P.W. Newacheck, and S.E. Kim A national profile of health care utilization and expenditures for children with special health care needs Arch Pediatr Adolesc Med 159 2005 10 17 (Pubitemid 40070637)
3. K.A. Kuhlthau, and J.M. Perrin Child health status and parental employment Arch Pediatr Adolesc Med 155 2001 1346 1350 (Pubitemid 33139590)
4. K. Kuhlthau, R. Kahn, and K.S. Hill et al. The well-being of parental caregivers of children with activity limitations Matern Child Health J 14 2010 155 163
5. W. Witt, C. Gottlieb, J. Hampton, and K. Litzelman The impact of childhood activity limitations on parental health, mental health, and workdays lost in the United States Acad Pediatr 9 2009 263 269
6. P.J. Chung, C.F. Garfield, and M.N. Elliott et al. Need for and use of family leave among parents of children with special health care needs Pediatrics 119 2007 e1047 e1055
7. B.M. Altman, P.F. Cooper, and P.J. Cunningham The case of disability in the family: impact on health care utilization and expenditures for nondisabled members Milbank Q 77 1999 39 75
8. Child and Adolescent Health Measurement Initiative. Data resource center for child and adolescent health. Available at: http://childhealthdata.org/ browse/survey. Accessed November 6, 2013.
9. C.D. Bethell, D. Read, and R.E.K. Stein et al. Identifying children with special health care needs: development and evaluation of a short screening instrument Ambul Pediatr 2 2002 38 48 (Pubitemid 44133341)
10. K. Kuhlthau, K.S. Hill, R. Yucel, and J.M. Perrin Financial burden for families of children with special health care needs Matern Child Health J 9 2005 207 218 (Pubitemid 40983448)
11. M.D. Kogan, B.B. Strickland, and S.J. Blumberg et al. A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006 Pediatrics 122 2008 e1149 e1158
12. R.J. McGrath, M.L. Stransky, W.C. Cooley, and J.B. Moeschler National profile of children with Down syndrome: disease burden, access to care, and family impact J Pediatr 159 2011 535-540.e2
13. D.Z. Kuo, E. Cohen, and R. Agrawal et al. A national profile of caregiver challenges among more medically complex children with special health care needs Arch Pediatr Adolesc Med 165 2011 1020 1026
14. S.L. Parish, P.T. Shattuck, and R.A. Rose Financial burden of raising CSHCN: association with state policy choices Pediatrics 124 suppl 4 2009 S435 S442
15. S.T. Wong, A. Galbraith, S. Kim, and P.W. Newacheck Disparities in the financial burden of children's healthcare expenditures Arch Pediatr Adolesc Med 159 2005 1008 1013 (Pubitemid 41633357)
16. H. Yu, A.W. Dick, and P.G. Szilagyi Does public insurance provide better financial protection against rising health care costs for families of children with special health care needs? Medical Care 46 2008 1064 1070
17. US Dept of Health and Human Services, National Center for Health Statistics. National survey of children with special health care needs. Available at: http://www.cdc.gov/nchs/slaits/cshcn.htm. Accessed September 30, 2013.
18. S.J. Blumberg, J.V. Luke, M.L. Cynamon, and M.R. Frankel Recent trends in household telephone coverage in the United States J.M. Lepkowski, C. Tucker, J.M. Brick, Advances in Telephone Survey Methodology 2008 John Wiley & Sons Hoboken, NJ 56 86
19. S.J. Blumberg, and J.V. Luke Reevaluating the need for concern regarding noncoverage bias in landline surveys AJPH 99 2009 1806 1810
20. US Dept of Health and Human Services Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children With Special Health Care Needs Chartbook, 2001 2004 US Dept of Health and Human Services, Health Resources and Services Administration Rockville, Md
21. US Dept of Health and Human Services Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children With Special Health Care Needs Chartbook, 2005-2006 2008 US Dept of Health and Human Services Rockville, Md
22. W. Witt, K. Litzelman, and C. Mandic et al. Healthcare-related financial burden among families in the US: the role of childhood activity limitations and income J Fam Econ Issues 32 2011 308 326
23. M.D. Kogan, P.W. Newacheck, L. Honberg, and B. Strickland Association between underinsurance and access to care among children with special health care needs in the United States Pediatrics 116 2005 1162 1169 (Pubitemid 46056422)
24. US Dept of Health and Human Services, Centers for Medicare and Medicaid Services. National health expenditure data: historical. Available at: http://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and- Reports/NationalHealthExpendData/NationalHealthAccountsHistorical.html. Accessed September 3, 2013.
25. The Henry J. Kaiser Family Foundation, Kaiser Commission on Medicaid and the Uninsured. Health coverage of children: the role of Medicaid and CHIP. Available at: http://www.kff.org/uninsured/upload/7698-06.pdf. Accessed March 25, 2013.
26. US Dept of Health and Human Services. How the health care law benefits you. Available at: http://www.hhs.gov/healthcare/facts/bystate/Making-a- Difference-National.html. Accessed November 6, 2013.
27. Association of Maternal and Child Health Programs. The Affordable Care Act and children and youth with autism spectrum disorders and other developmental disabilities. Available at: http://www.amchp.org/Policy-Advocacy/ health-reform/resources/Documents/ACA-AutismFactSheet-5-3-12.pdf. Accessed November 6, 2013.
28. P. McManus A Comparative Review of Essential Health Benefits Pertinent to Children in Large Federal, State, and Small Group Health Insurance Plans: Implications for Selecting State Benchmark Plans 2012 American Academy of Pediatrics Elk Grove Village, Ill
29. N. Halfon, A. Houtrow, K. Larson, and P.W. Newacheck The changing landscape of disability in childhood Future Child 22 2012 13 42
30. J.P. Guevara, D.S. Mandell, and A.L. Rostain et al. National estimates of health services expenditures for children with behavioral disorders: an analysis of the Medical Expenditure Panel Survey Pediatrics 112 2003 e440 e446
31. S.H. Busch, and C.L. Barry Mental health disorders in childhood: assessing the burden on families Health Aff 26 2007 1088 1095
32. C.P. Peters Children With Special Health Care Needs: Minding the Gap 2005 George Washington Univeristy Washington, DC National Health Policy Forum
33. S.J. Blumberg, and A.C. Carle The well-being of the health care environment for CSHCN and their families: a latent variable approach Pediatrics 124 suppl 4 2009 S361 S367
34. US Dept of Labor, Bureau of Justice Statistics. Employment status of the civilian noninstitutional population, 1942 to date. Available at: http://www.bls.gov/cps/cpsaat01.pdf. Accessed November 6, 2013.
35. Abrams M, Nuzum R, Mika S, Lawlor G. Realizing health reform's potential: how the Affordable Care Act will strengthen primary care and benefit patients, providers, and payers. 2011; http://www.commonwealthfund.org/Publications/Issue- Briefs/2011/Jan/Strengthen-Primary-Care.aspx. Accessed March 25, 2013.