Research methods and epidemiology for children with special health care needs

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.