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Research Methods and Epidemiology for Children with Special Health Care Needs

  • David Hollar
  • Arun Karpur
Chapter

Abstract

Children with special health care needs (CSHCN) are the subject of many research activities that aim to directly or indirectly benefit CSHCN. Consequently, researchers must abide by high ethical standards in the planning, design, conduct, reporting, and protection of CSHCN data in their research work. Most importantly, researchers must view and respect CSHCN research participants as unique individuals with equal human and civil rights. The purpose of this chapter is to describe appropriate research design approaches, research ethics, respect for CSHCN, their families, and privacy rights, and epidemiological statistical methodologies. We discuss these issues within the context of biopsychosocial models such as the International Classification of Functioning, Disability and Health (ICF), Healthy People 2010 and 2020, Focus Group 6 (Disability and Secondary Conditions), as well as with respect to US legislation such as the Family Educational Rights and Privacy Act (FERPA) and the Health Insurance Portability and Accountability Act (HIPAA). Throughout research activities with CSHCN, the focus should be on rigorous methods that have the potential to benefit CSHCN while minimizing risks and protecting individual rights of CSHCN.

Keywords

Autism Spectrum Disorder Medical Home Medical Expenditure Panel Survey Child With Special Health Care Need Respite Care 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Abbreviations

AAP

American Academy of Pediatrics

ANOVA

Analysis of Variance

AUC

Area under the Curve

CDC

U.S. Centers for Disease Control and Prevention

CSHCN

Children with Special Health Care Needs

FERPA

Family Educational Rights and Privacy Act

HHS

US Department of Health and Human Services

HIPAA

Health Insurance Portability and Accountability Act

ICDR

Interagency Committee on Disability Research (U.S.)

IRB

Institutional Review Board

MANOVA

Multiple Analysis of Variance

NICHD

National Institute of Child Health and Development

NIH

National Institutes of Health

NS-CSHCN

National Survey of Children with Special Health Care Needs

RCT

Randomized Clinical Trial

ROC

Receiver Operating Characteristic

SAS

Statistical Analysis System (SAS Institute, Cary, NC)

SEM

Structural Equation Model

SPSS

Statistical Package for the Social Sciences (SPSS, Inc., Chicago, IL)

USC

United States Congress

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Copyright information

© Springer Science+Business Media New York 2012

Authors and Affiliations

  1. 1.University of North Carolina at Chapel HillChapel HillUSA
  2. 2.Employment and Disability InstituteCornell University ILR SchoolNew YorkUSA

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