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Proxy Responses in Research on COVID-19 Among People With Intellectual and Developmental Disabilities
Sarah Lineberry1, Matthew Bogenschutz1, Michael Broda1
1Sarah Lineberry, Matthew Bogenschutz, and Michael Broda, Virginia Commonwealth University.
American Journal on Intellectual and Developmental Disabilities
|August 28, 2024
Summary
Proxy responses in research on intellectual and developmental disabilities (IDD) differ significantly from independent responses. This highlights potential biases in understanding the experiences of people with IDD, especially during health crises like COVID-19.
Area of Science:
- Health Services Research
- Disability Studies
- Health Outcomes Research
Background:
- Calls for inclusive research methods for people with intellectual and developmental disabilities (IDD) persist.
- Proxy responses are common but may not fully represent the perspectives of individuals with IDD.
- The COVID-19 pandemic underscored the need for research on IDD health outcomes due to disproportionate impacts.
Purpose of the Study:
- To explore the patterns of proxy responses in research concerning people with IDD.
- To analyze the differences in response patterns using proxy data versus independent data.
Main Methods:
- Utilized Exploratory Graph Analysis (EGA).
- Analyzed data from the COVID-19 Supplement of the National Core Indicators In-Person Survey.
- Compared response patterns across independent, proxy, and mixed response groups.
Main Results:
- Significant differences in response patterns were observed between independent, proxy, and mixed response groups.
- These differences exceeded those attributable to demographic variations alone.
- Proxy responses may introduce distinct patterns compared to self-reported data.
Conclusions:
- Proxy responses introduce unique patterns in survey data for people with IDD.
- Findings suggest caution is needed when interpreting proxy data in IDD research.
- Further research is needed to understand and mitigate potential biases from proxy use.
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