Abstract
In the National Children's Study (NCS), assessments were proposed and developed that used a wide range of modes of administration (e.g., direct in-person interviews, telephone interviews, computer assisted interviews, self-administered questionnaires, real time and recall observations, and physical examinations). These modes of administration may pose accessibility challenges for some people with disabilities. Accessibility of measurement is important to consider because systematic exclusion of people with disabilities from research can lead to measurement bias and systematic error in derived scores. We describe our approach to analyzing the accessibility of measures in the NCS and describe the work of the Accessibility Domain Team. Finally, we describe a decision process for creating and using accessible health research measures.
Highlights
Findings from the 2018-2019 National Survey of Children’s Health indicate that 18.9% of children in the United States under the age of 18 years have special health care needs [1]
The more conservative American Community Survey indicates that 4.3% of the civilian non-institutionalized population of children aged under 18 have a disability [2]
It is critical to ensure that measurement instruments are accessible and usable for diverse respondents to ensure that they capture the health experiences and functional capacity of children with disabilities and special healthcare needs
Summary
Findings from the 2018-2019 National Survey of Children’s Health indicate that 18.9% of children in the United States under the age of 18 years (or ∼13.9 million children) have special health care needs [1]. When children with disabilities and special healthcare needs are excluded from research, they become missing data which compromises the ability of health systems to develop, implement and evaluate person-centered preventive, primary and longterm care services that address their health needs. Both self-report and performance based measures have the potential to expand current understanding of children’s health and development, and work toward achieving public health priorities for children with special health care needs and disabilities, like those outlined in the Healthy People initiatives since 2000 [19].
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