Center for Studying Disability Policy Compendium: Data Collection Methods
This compendium provides a comprehensive overview of collecting data on people with disabilities, featuring 554 indexed references since 2012. It aims to fill knowledge gaps, serving as an up-to-date and accessible resource released annually. The development process involves obtaining diverse references, applying eligibility criteria, and considering global sources, excluding non-English articles. The new entries explore crucial topics like data collection modes and self-reported impairments, offering insights into areas such as SMS-based surveys for monitoring symptoms and function of adults with ADHD and quality of life measures in adolescents with cerebral palsy. Inclusive strategies in research and enabling communication for people with disabilities are also highlighted.
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Center for Studying Disability Policy Compendium of Disability Data Collection Methods Stacie Feldman and Jason Markesich October 6, 2022
The compendium fills a knowledge gap Up-to-date and accessible source of information on collecting data from or about people with disabilities Includes 554 indexed references published since 2012 Living document; released annually Center for Studying Disability Policy 2
References on a variety of topics Disability/impairment type Data collection Questionnaire design and measurement Sampling and nonresponse Special populations Ongoing national surveys Center for Studying Disability Policy 4
Compendium development Obtain references from multiple and diverse sources Apply eligibility criteria to specify which references to include in, or exclude from, the compendium - Include resources that discuss, examine, or test methods used to collect data from people with disabilities - Consider resources from all geographic regions in the world for inclusion - Exclude articles for which the full text was not available, accessible, or not published in English Center for Studying Disability Policy 5
New entries shed light on important topics Data collection modes - Response format effects on self-reported impairments - Usability of personalized remote SMS-based surveys for monitoring symptoms and function of adults with ADHD - Using arts-based methods in disability hate crime research Proxy use - Self-reported and proxy-reported measures of depression in people with aphasia - Disparity of child- and parent-reported quality of life measures in adolescents with cerebral palsy Center for Studying Disability Policy 6
New entries shed light on important topics (cont d) Inclusive strategies - Exploring communication accessible research methods - Enabling people with speech and motor disorders to become co-researchers - Best practices for collecting self-reported data from people with dementia - Capturing first-person perspectives of adolescents with autism - Strategies for including people with chronic critical illness and communication impairments in qualitative research Center for Studying Disability Policy 7
New entries shed light on important topics (cont d) Recruitment - Using MTurk for recruiting people with disabilities in rural areas - Strategies for engaging children with disabilities and their parents - Potential bias in using internet surveys to identify people with disabilities Questionnaire development - Validity of the Scoliosis Research Society (SRS-30) questionnaire - Test-retest reliability of physical activity questionnaires in Parkinson s disease - Developing a brief version of the Insomnia Severity Index (Isi-3) in older veterans with PTSD Center for Studying Disability Policy 8
Accessing the compendium URL: https://www.mathematica.org/publications/2022- compendium-of-disability-data-collection-methods Center for Studying Disability Policy 9
Funding for this study was provided by the Research and Training Center on Disability Statistics and Demographics at the University of New Hampshire, which is funded by the National Institute for Disability, Independent Living, and Rehabilitation Research in the Administration for Community Living at the U.S. Department of Health and Human Services (DHHS) under cooperative agreement 9ORTGE0001. The contents do not necessarily represent the policy of DHHS, and the reader should not assume endorsement by the federal government (EDGAR, 75.620 (b)). Center for Studying Disability Policy Center for Studying Disability Policy
For more information Stacie Feldman SFeldman@Mathematica-mpr.com Jason Markesich JMarkesich@Mathematica-mpr.com Center for Studying Disability Policy 11
