Developmental Disability, Disability, Intellectual Disability
Conditions
Keywords
Bias, Attitudes, Perceptions, Inclusion, Translational Science, Representation
Brief summary
This study will measure the effects of a brief one-time eLearning intervention on researcher Knowledge, Attitudes, and Perceptions (KAP) of including people with disabilities (PWDs) in biomedical & behavioral research. Researchers will be recruited from across the Einstein/Montefiore network, and other medical centers with a focus on CTSAs.
Detailed description
According to the Centers for Disease Control and Prevention (CDC), 1 in 4 adults in the U.S. has a disability, approximately 29% of the overall population. Adults with (vs. without) disabilities have higher rates of obesity (41.6% v. 29.6%), smoking (21.9% v. 10.9%), heart disease (9.6% v. 3.4%), and diabetes (15.9% v. 7.6%), and lower rates of preventive care (e.g., mammograms, cervical cancer screening). Disability may present as salient to others or be non-visible (e.g., autism, Long COVID). Non-visible disabilities comprise 70-80% of all disabilities; robust data finds stronger negative attitudes towards non-visible (vs. visible) disabilities. People with Disabilities (PWDs) are under-represented in health research. Reasons include: a) structural elements of research: poorly justified exclusion criteria, PWDs not designated as a vulnerable group, b) access barriers: physical, sensory, literacy; and c) PWDs skepticism due to researcher bias, lack of perceived benefit, focus on cure vs. quality of life. Data on provider attitudes towards people with disabilities (PWDs) is scant. KAP of barriers and benefits are modifiable roadblocks to including PWDs in research. The research team will develop and test tools to increase researcher motivation and capacity to mitigate perceived barriers. For Aims 1 and 2 of D2/R3, the research team engaged the 10 US sites (Einstein is one) that are Clinical and Translational Science Awards (CTSAs) and Intellectual and Developmental Disabilities Research Centers (IDDRCs) for basic/clinical research and University Centers of Excellence in Developmental Disabilities (UCEDDs). Timeliness - This study is timely and novel as the perception of disability in research settings has shifted in recent years. Made apparent by the NIHs designation of PWDs as a health disparities population and changes to the Research, Condition, and Disease Categories (RCDCs) (i.e., disability research is now included on the list). This registration is exclusive to Aim 3 of the D2/R3 study.
Interventions
OTHEReLearning module
* Baseline pre-survey (15 minutes) * Baseline learning module (30 minutes) * Baseline post-survey (15 minutes) * Follow-up survey (3-4 weeks later) Components of KAP survey: Demographics-research experience/role, disability status, exposure to PWDs, etc. (baseline pre-survey only; e.g. not asked at post follow-up survey) Knowledge-short-answer, clinical scenarios, items focused on historical/legislative context, etc. Attitudes-validated "Attitudes to Disability Scale" (ADS) developed by a World Health Organization (WHO) working group Perceptions-questions developed by Prosci's Awareness, Desire, Knowledge, Ability, Reinforcement (ADKAR) framework.
OTHERControl
Disability Statistics Training (University of New Hampshire Link). Modules identify disability data sources via US surveys and measurement hurdles in disability research: A) Module 2/Topic 1 (13m:44s): Operationalization of Disability in Surveys- covers the two common operationalization methods, the 6 Question Sequence (6QS) and the Washington Group Short Set (WGSS), and the challenges of collecting disability data B) Module 3/Topic 1 (13m:48s): Disablement Models- conceptually defines models, such as Nagi's Disablement Model, Work Disability, Verbrugge and Jette, and WHO's Definition.
Sponsors
Albert Einstein College of Medicine
National Center for Advancing Translational Sciences (NCATS)
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
OTHER
Masking
SINGLE (Subject)
Intervention model description
Parallel Assignment RCT with block randomization by research team role within each arm: * n=65 Principal or Co-investigators * n=35 other study personnel (i.e. coordinator, interventionist, etc.) Participating researchers (n=200) will be randomly assigned to either of 2 arms (i.e. Experimental- eLearning module or Control- module on disability data sources). Participants will begin their respective intervention modules after completing the baseline KAP survey.
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* Aged \>=18 * Conducts non-disability focused research (in the past 3 years) * Conducts (primarily) research with/on adults * Affirms their understanding that eligibility and data must pass quality assurance checks before compensation is disbursed
Exclusion criteria
* Participant in Aim1/Aim2 of D2/R3 study * Respondent fails to provide a valid US-based personal institutional email
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change in Attitudes Towards Disability | Pre-intervention at baseline and 3-4 weeks post intervention | Change in Attitudes will be assessed using the 16 item Attitudes to Disability Scale (ADS). Scoring range on a 5-point Likert scale ranging from 1-5, yielding an overall possible scoring range of 16-80. Participants for whom a single item is inapplicable (i.e., N/A) will have data removed for that item. Lower scores indicate less favorable attitudes towards people with disabilities, while higher scores indicate more favorable attitudes. \*Note: Questions 1-6 \& 11-16 are reverse coded. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Change in Knowledge Scores | Pre-intervention at baseline and 3-4 weeks post intervention | Change in Knowledge scores from baseline will be assessed using a 10 item multiple choice scale which assesses how disability is conceptualized, historical and legislative context, etc. Scoring range: 0%-100%, whereby the percentage correct indicates comprehension towards factual items and best practices for engaging people with disabilities. Questions 4, 8, and 10 can be scored for partial credit. Percentage correct scores will be summarized by study arm. |
| Change in Perception Scores | Pre-intervention at baseline, and 3-4 weeks post intervention | Change in Perception from baseline will be assessed using a 17 item Change in Perception scale. Scores are based on 5 domains (i.e. Awareness, Desire, Knowledge, Ability, Reinforcement). Scoring range for each domain includes: Awareness (1-5), Desire (2-10), Knowledge (4-20), Ability (4-20), Reinforcement (6-30). An overall composite score of 17-85 for all 5 of these domains. Participants for whom a single item is inapplicable (i.e., N/A) will have data removed for that item. Higher scores indicate greater awareness of, willingness and motivation to include, understanding about, ability to include, and reinforcement of inclusive behavior, respectively, regarding inclusion of people with disabilities in research. |
Countries
United States
Contacts
PRINCIPAL_INVESTIGATORKaren Bonuck, PhD
Albert Einstein College of Medicine
Outcome results
None listed