“Asking About Disability in Research” Tool

Quiz Questions

1.
I am looking for a...
- A.
  Framework
- B.
  Tool
2.
Study purpose(s) (select all that apply)
- A.
  To identify prevalence of disability within a population
- B.
  To identify prevalence of functions impacted by disability within a population
- C.
  To understand experiences of disability
- D.
  To assess design, effectiveness and or implementation of disability inclusive initiatives or activities
- E.
  Not a disability focused study, but want to include "something" to identify people with disabilities
- F.
  Other
3.
Main study purpose
- A.
  To measure health and disability at individual and population levels
- B.
  To address barriers/limitations people with disability might encounter, allowing their full participation in the study
- C.
  Other
4.
Funding/Labour intensity level
- A.
  None/Low
- B.
  Mid
- C.
  High
5.
Age of population of interest:
- A.
  Adults only
- B.
  Adults and children (all ages)
6.
Mode of delivery
- A.
  Self-administered
- B.
  Requires administrator
- C.
  Either
7.
Literacy level required by participants
- A.
  Low - Participants do not need to be able to read and write
- B.
  Mid - Participants need to be able to read
8.
I need to know about, and/or classify, specific impairments
- A.
  Yes
- B.
  No
9.
The level of detail/extend of disability I wish to explore is
- A.
  Low
- B.
  Mid
- C.
  High
10.
My project is focused on gathering data from
- A.
  Individual/Family
- B.
  Household/Community/All
11.
Scale size of project
- A.
  Small (i.e., Tens of participants)
- B.
  Medium (i.e., Hundreds of participants)
- C.
  Large (i.e.,Thousands of participants)

Quiz Outcomes

1.
International Classification of Functioning Disability and Health (ICF)
WHO framework that uses classification codes to describe health and disability, where both measures can be qualitatively and quantitatively assessed through interviews or surveys. The first component of the approach is functioning and disability, which includes body functions and structures, as well as activities and participation. The second part is contextual factors, such as environmental and personal factors. It is a comprehensive tool that can discern the prevalence of disability and its impacts within populations across various settings; however, training is required for the use of codes and administration time is long.
2.
Convention on the Rights of Persons with Disabilities (CRPD)
Human rights-based framework created by the United Nations that sees people with disability as equal members of society. As such, studies using the CRPD approach account for the barriers/limitations people with disability may encounter, allowing for equitable participation in the study for anyone, disabled or not. Researchers who foundationally intertwine this framework into their study will see data much more representative of the actual general population because areas such as context sensitivity, interdisciplinary collaboration, relational analyses, web of effects, and personalized outcomes are considered.
3.
WHO Disability Assessment Schedule (WHODAS 2.0)
Generic instrument based on the conceptual framework of ICF which measures health and disabilities in adults, including mental, neurological, and addictive disorders. Through a quantitative scale, it records functioning in six domains of life: cognition, mobility, self-care, getting along, life activities, and participation. The survey is brief and can be easily completed through self-administration, interview, or a proxy. It provides some insight into disability prevalence and experiences in a population, although additional information from other tools is required to achieve a deeper understanding of disability.
4.
WG Short Set on Functioning (WG-SS)
A series of fixed question sets that allow for a low-cost, efficient way to collect large amounts of data that are easily comparable between studies, locations, and countries. The Washington Group Short set can be used for any individual 5 years old and above and provides 6 or 8 fixed questions that cover: seeing, hearing, walking/climbing stairs, remembering/concentrating, self-care, and communication (expressive and receptive). The Washington Group Enhanced Short Set can be used for any individual 18 years old and above, and provides 12 questions across the same 6 domains as the short set, along with upper body activities, and affect (depression and anxiety).“Disability” is never explicitly mentioned in any of the questions.
5.
Washington Group Extended Set on Functioning (WG-ES)
A series of fixed question sets that allow for a low-cost, efficient way to collect large amount of data that are easily comparable between studies, locations, and countries. The Washington Group questions can be used for any individual 5 years old and above and includes the 6 questions of the WG-Short Set that cover: seeing, hearing, walking/climbing stairs, remembering/concentrating, self-care, and communication (expressive and receptive). The Washington Group Extended Set provides 34 questions and 3 optional questions across the same 8 domains as the Washington Group Enhanced Short Set with pain and fatigue added. Each question may be responded to in 4 ways: (1) No, no difficulty, (2) Yes, some difficulty, (3) Yes, a lot of difficulties and (4) Cannot do it at all. “Disability” is never explicitly mentioned in any of the questions.
6.
Demographic Health Surveys (DHS) Disability Module
A questionnaire module focused on disability which is administered in addition to a set of household survey questions used to collect information on topics relevant to the population, health, and nutrition of countries. The DHS Module requires the interviewee to rate on a quantitative scale 5 areas of disability: visual, hearing, communication, cognition (memory, concentration), mobility, and self-care. The survey is completed by representatives of relevant households, who provide information for their family members of age 5 and above. It can be used on a large scale in a community or country context. It requires moderate labour and is useful mainly for the identification of disability prevalence in large surveys.
7.
The Model Disability Survey (MDS)
A WHO-recommended quantitative data collection tool that delves into the various aspects of disability, such as functioning, health conditions, activity restrictions, environmental factors, and influence on community involvement. It involves a long (120-150 minutes) interview process where a trained administrator gathers perspectives of three different types of household members - household head, individual respondent, and proxy respondent. In general, the MDS provides comprehensive information about the lives and difficulties encountered by disabled populations at the regional or national level for analysis, discussion, and planning.
8.
Rapid Assessment of Disability (RAD)
A quantitative survey designed to collect information about the demographic, functioning, rights awareness, well-being, and access to the community for people with disability. It classifies disability into various categories: vision, hearing, physical, psycho-social, and intellectual. It is administered through an initial household interview and subsequent individual interview, providing a snapshot of participants’ life situations at a community and population level. In particular, it is useful as a means to obtain baseline data before designing and implementing disability-inclusive development strategies.
9.
Asking Direct Question
A simple, low-cost disability data collection method that both children and adults can partake in, and where the interviewer does not need extensive training. It starts by directly asking the participant to self-identify whether or not they have a disability. The participant can then be asked an open-ended follow-up question, allowing the participant to provide as much information as they would like to regarding their disability, in their own words.
10.
Consider options with study advisory group
We recommend that your team discuss the options with an Advisory Group which includes persons with disabilities and ideally, who have experience designing and carrying out research studies. For many studies, there are several options that could be used, and consulting with an Advisory Group will improve your decisions.