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Research Methods and Epidemiology for Children with Special Health Care Needs

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Handbook of Children with Special Health Care Needs

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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.

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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

References

  • American Academy of Pediatrics. (2002). Medical home initiatives for children with special needs project advisory committee: The Medical Home. Pediatrics, 110, 184–186. http://pediatrics.aappublications.org/content/110/1/184.full.html.

  • American Educational Research Association, American Psychological Association, National Council on Measurement in Education. (1999). Standards for educational and psychological testing. Washington: American Educational Research Association.

    Google Scholar 

  • Boulet, S. L., Boyle, C. A., & Schieve, L. A. (2009). Health care use and health and functional impact of developmental disabilities among US children, 1997–2005. Archives of Pediatrics & Adolescent Medicine, 163(1), 19–26.

    Article  Google Scholar 

  • Casey, P. H., Lyle, R. E., Bird, T. M., Robbins, J. M., Kuo, D. Z., Brown, C., Lai, A., Tanios, A., & Burns, K. (2011). Effect of hospital-based comprehensive care clinic on health costs for Medicaid-insured medically complex children. Archives of Pediatrics & Adolescent, 165(5), 392–398.

    Article  Google Scholar 

  • Chen, A. Y., & Newacheck, P. W. (2006). Insurance coverage and financial burden for families of children with special health care needs. Academy of Pediatrics, 6(4), 204–209.

    Google Scholar 

  • Cohen, J. (1988). Statistical power analysis for the social sciences. Upper Saddle River: Lawrence Erlbaum Associates.

    Google Scholar 

  • Crocker, L., & Algina, J. (1986). Introduction to classical & modern test theory. Fort Worth: Harcourt Brace Jovanovich.

    Google Scholar 

  • Feuer, M. J., Towne, L., & Shavelson, R. J. (2002). Scientific culture and educational research. Educational Researcher, 31(8), 4–14.

    Article  Google Scholar 

  • Fields, M. J., & Jette, A. M. (Eds.). (2007). Future of disability in America. Washington: National Academies Press.

    Google Scholar 

  • Frontera, W. R. (2006). Research and the survival of physical medicine and rehabilitation. American Journal of Physical Medicine & Rehabilitation, 85(12), 939–944.

    Article  Google Scholar 

  • Gannotti, M. E., Kaplan, L. C., Handwerker, W. P., & Groce, N. E. (2004). Cultural influences on health care use: Differences in perceived unmet needs and expectations of providers by Latino and Euro-American parents of children with special health care needs. Journal of Developmental and Behavioral Pediatrics, 25(3), 156–165.

    Article  PubMed  Google Scholar 

  • Gay, L. R. (1992). Educational research: Competencies for analysis and application (4th ed.). New York: Merrill.

    Google Scholar 

  • Gouvier, W. D., & Coon, R. C. (2002). Misconceptions, discrimination, and disabling language: Synthesis and review. Applied Neuropsychology, 9(1), 48–57.

    Article  PubMed  Google Scholar 

  • HHS. (2009). Healthy people 2020 draft objectives. Washington: U.S. Department of Health and Human Services.

    Google Scholar 

  • Hollar, D. W. (2005). Risk behaviors for varying categories of disability in NELS:88. Journal of School Health, 75(9), 350–358.

    PubMed  Google Scholar 

  • Hollar, D. W. (2009). Progress along developmental tracks for electronic health records implementation in the United States. Health Research Policy and Systems, 7, 3.

    Article  PubMed  Google Scholar 

  • ICDR. (2007). The Interagency Committee on Disability Research 2004–2006 report to the President and Congress. Washington: U.S. Department of Education.

    Google Scholar 

  • Lissitz, R. W., & Samuelsen, K. (2007). A suggested change in terminology and emphasis regarding validity and education. Educational Researcher, 36(8), 437–448.

    Article  Google Scholar 

  • Lotstein, D. S., Inkelas, M., Hays, R. D., Halfon, N., & Brook, R. (2008). Access to care for youth with special health care needs in transition to adulthood. Journal of Adolescent Health, 43, 23–29.

    Article  PubMed  Google Scholar 

  • Lozano, P., Finkelstein, J. A., Carey, V. J., Wagner, E. H., Inui, T. S., Fuhlbrigge, A. L., Soumerai, S. B., Sullivan, S. D., Weiss, S. T., & Weiss, K. B. (2004). A multisite randomized clinical trial of the effects of physician education and organizational change in chronic-asthma care. Archives of Pediatrics & Adolescent Medicine, 158, 875–883.

    Article  Google Scholar 

  • May, V. M., & Ferri, B. A. (2005). Fixated on ability: questioning ableist metaphors in feminist theories of resistance. Prose Studies, 27(1,2), 120–140.

    Article  Google Scholar 

  • Messick, S. (1988). Validity. In R. L. Linn (Eds.), Educational measurement (3rd ed. pp. 13–103). New York: American Council on Education and Macmillan Publishing Company.

    Google Scholar 

  • Nageswaran, S. (2009). Respite care for children with special health care needs. Archives of Pediatrics & Adolescent Medicine, 163(1), 49–54.

    Article  Google Scholar 

  • National Research Council. (2002). Scientific research in education. In: R. J. Shavelson & L. Towne (Eds.), Committee on scientific principles for educational research. Washington: National Academies Press.

    Google Scholar 

  • Newacheck, P. W., & Kim, S. E. (2005). A national profile of health care utilization and expenditures for children with special health care needs. Archives of Pediatrics & Adolescent Medicine, 159, 10–17.

    Article  Google Scholar 

  • Popper, K. (1935, 2002). The logic of scientific discovery. London: Routledge.

    Google Scholar 

  • Reiss, J. G., Gibson, R. W., & Walker, L. R. (2005). Health care transition: Youth, family, and provider perspective. Pediatrics, 115, 112–120.

    Article  PubMed  Google Scholar 

  • Rothman, K. J., & Greenland, S. (1998). Modern epidemiology (2nd ed.). Philadelphia: Lippincott-Raven.

    Google Scholar 

  • Shavelson, R. J., & Berliner, D. C. (1988). Erosion of the educational research infrastructure. Educational Researcher, 17(1), 9–12.

    Google Scholar 

  • Singer, J. D., & Willett, J. B. (2003). Applied longitudinal data analysis. New York: Oxford University Press.

    Book  Google Scholar 

  • Strickland, B., McPherson, M., Weismann, G., van Dyck, P., Huang, Z. J., & Newacheck, P. (2004). Access to the medical home: Results of the National Survey of Children with Special Health Care Needs. Pediatrics, 113(5), 1485–1492.

    PubMed  Google Scholar 

  • Swets, J. A., Dawes, R. M., & Monahan, J. (2000). Better decisions through science. Scientific American, 283(4), 70–75.

    Article  Google Scholar 

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Authors and Affiliations

  1. University of North Carolina at Chapel Hill, CB 7530, 27599, Chapel Hill, NC, USA

    Jr. David Hollar Ph.D., MS

  2. Employment and Disability Institute, Cornell University ILR School, 16E 34th ST, 10016, New York, NY, USA

    Arun Karpur M.B.B.S., MD, M.P.H.

Authors
  1. Jr. David Hollar Ph.D., MS
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  2. Arun Karpur M.B.B.S., MD, M.P.H.
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Correspondence to David Hollar Ph.D., MS .

Editor information

Editors and Affiliations

  1. Chapel Hill, University of North Carolina, 410 Berryhill, Chapel Hill, 27599-7575, North Carolina, USA

    David Hollar

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Hollar, D., Karpur, A. (2012). Research Methods and Epidemiology for Children with Special Health Care Needs. In: Hollar, D. (eds) Handbook of Children with Special Health Care Needs. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-2335-5_19

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  • DOI: https://doi.org/10.1007/978-1-4614-2335-5_19

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