Research Tool: Asking About Disability in Research

Brief Intro: Want to learn how to incorporate disability-related questions into your project more effectively? The “Asking About Disability in Research” Tool, is an informative online resource for global health researchers. This tool guides researchers in determining the most suitable methodology for their specific disability research projects, while promoting inclusivity and accuracy in global health studies:

Link to online tool: https://www.tryinteract.com/share/quiz/6371b082093c0100161b6b41 

PDF of tool: Questions – Determining an Approach to Researching Disability

Main Project Team: Soomin Lee, Natalie Ho, Andrea Kuntjoro, Lynn Cockburn

Detailed Background: Approximately 16% of the world’s population lives with a disability. Disability is generally recognized as the interplay of physical or mental health conditions with other factors that establish barriers and limit an individual’s performance of life activities, also known as functional difficulties.

The definition of disability varies across global regions due to differences in geographic, social, and economic factors. Disability is also distinct from the term “impairment”. Impairment refers to the consequence of a reduction or loss of body function or part, without considering the barriers to function.

Given these nuances, there are challenges for global health researchers conducting disability research to determine an appropriate approach for defining and “asking” about disability, particularly when conducting disability-inclusive work within a multi-national setting. Moreover, people with disabilities are often excluded from research, despite their prevalence in the population.

Inclusion is essential in research studies to ensure the accuracy of findings, particularly in the field of disability. Research focused on disability often centers on topics such as the experiences of those with disabilities, disability-inclusive development, and the accessibility of relevant policies and interventions. Disability research or projects are typically conducted by non-profit organizations, universities, and groups affiliated with universities.

Although current literature outlines several specific approaches to defining disability, there is a lack of resources and guidance tools that can assist researchers in determining the best way to define and “ask” about disability for a given research project.

Therefore, in our project, we analyzed several approaches to defining disability. We developed an online questionnaire tool that can assist individuals and teams in determining the most suitable approach for their project, based on specific research study designs and variables.

Find below short summaries of the approaches included in the tool:

• Convention on the Rights of Persons with Disabilities (CRPD). A human rights-based framework created by the United Nations that regards people with disabilities as equal members of society. Studies using the CRPD approach account for the barriers/limitations people with disabilities may encounter, allowing for equitable participation in the study for anyone, disabled or not. Researchers who fundamentally intertwine this framework into their study will yield 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.
• International Classification of Functioning Disability and Health (ICF): A framework developed by the World Health Organization. This framework uses classification codes to describe health and disability, of which both can be qualitatively and quantitatively assessed through interviews or surveys. The first component of the approach is functioning, which includes body functions and structures, as well as activities and participation. The second component encompasses contextual factors, such as environmental and personal factors. It is a comprehensive tool that can discern the prevalence of disabilities and their impacts within populations across various settings; however, training is required for the use of codes, and the extensive administration time is needed.
• WHO DAS: A generic instrument based on the conceptual framework of the ICF. It measures health and any disabilities in adults, including mental, neurological, and addictive disorders. Through a quantitative scale, the WHO DAS records functioning in six domains of life: cognition, mobility, self-care, getting along, life activities, and participation. This brief survey can be easily completed through self-administration, an interview, or by a proxy. It provides some insight into the prevalence and experiences of disability in a population, although additional information from other tools is required to achieve a deeper understanding of disability.
• Washington Group Question Sets: A series of fixed question sets available online that provide 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 aged 5 years and above and provides six fixed questions covering: 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 aged 18 years and above and provides 12 questions across the same six domains as the normal short set, along with upper body activities, and affect (depression and anxiety). Finally, the Washington Group Extended Set can also be used for any individual aged 18 years and above and provides 34 questions and three optional questions across the same eight domains as the Washington Group Enhanced Short Set, with the addition of pain and fatigue.
  • If you are planning to conduct a country-wide population level study, using the Demographic Health Surveys is suggested.
• The Model Disability Survey (MDS): A quantitative data collection tool recommended by the World Health Organization (WHO) that delves into various aspects of disability, such as functioning, health conditions, activity restrictions, environmental factors, and influence on community involvement. It involves a lengthy (120-150 minutes) interview process during which a trained administrator gathers perspectives from three different types of household members: the household head, the individual respondent, and the proxy respondent. Generally, it provides comprehensive information about the lives and difficulties encountered by disabled populations at regional or national levels for analysis, discussion, and planning.
• Rapid Assessment of Disability (RAD): A quantitative survey designed to collect information about the demographic, functioning, rights awareness, well-being, and community access for people with disabilities. It classifies disability into various categories: vision, hearing, physical, psychosocial, and intellectual. Moreover, it is administered through an initial household interview and a subsequent individual interview, providing a snapshot of participants’ life situations at a community and population level. It is useful for obtaining baseline data before designing and implementing disability-inclusive development strategies. The RAD includes rights awareness, which is often not included in other tools.
• Direct Question: A simple, low-cost, two-part disability data collection approach that both children and adults can partake in, and for which the interviewer does not need training. It begins by directly asking the participant to self-identify whether they have a disability. Then, the interviewer asks an open-ended follow-up question, allowing the participant to provide as much information as they’d like regarding their disability, in their own words.

References:

1. WHO Family of International Classifications. International Classification of Functioning, Disability and Health (ICF) [Internet]. 2023. Available from: https://icd.who.int/dev11/l-icf/en
2. World Health Organization. Disability [Internet]. Available from: https://www.who.int/health-topics/disability#tab=tab_1

Acknowledgements: We’d like to thank Andrea Duncan, Tim Bressmann, Christian Noumi and members of the PIRL Project team for taking the time to review our work and provide us with meaningful feedback.

Funding: This project was graciously funded by the Canadian Federation of Medical Students Global Health Initiative Grant. We are very grateful for a Partnership Development Grant from the Social Sciences and Humanities Research Council of Canada, # 890-2018-0086, which supported the early development of this work.