Accessible Research with PwDs (Persons with Disabilities) Challenges and way forward

Vasudha Chakravarthy & S. Ramanathan

June 2020

Photograph: one of the FGDs

More than 15 percent  of the world’s population is affected by various forms of disability [1]. Yet, research, more so, health research, informed by the perspectives of the PwDs, is limited [2]. We, at Development Solutions, did two assignments including young PwDs as a part of our research, with a focus on menstrual and sexual and reproductive needs. The latter assignment focused on young persons with hearing disabilities. 

We had anticipated the challenges and planned for it, yet,  we encountered issues. Based on field experience, we are outlining some of the critical challenges and lessons on addressing them. 

The first challenge we faced was in getting consent.  Parents and/or other gatekeepers were not too keen on their wards being respondents. They were perhaps protective of them, which is understandable. However, we needed their consent, and getting their consent took effort and perseverance.  Once that was overcome, to get the young people to respond, the questions had to be translated from, say Hindi, to the local language, say Odia, and then the sign language (for children with hearing and speech disabilities). Often, the essence was lost, in repeating questions to ensure that they were understood. The challenge was even more in a group discussion. The process took time, often more than 2-3 hours. The long duration of the discussions meant that the respondents were not entirely engaged. The third was that translators identified locally for the specific language, though skilled at translation had no conception of the SRH issues. Some were also uncomfortable with the words and terms and were hesitant to ask questions. We had anticipated this and had oriented the interpreters. Yet, the brief orientation didn’t overcome their long years of socialization. Their discomfort with SRH and the tediousness of repetitive questioning led to fatigue among the translators.   

The most significant challenge was that since the young people were from marginal and vulnerable households, many rarely went to schools. For instance, those with hearing and speech disabilities had developed their own vernacular signs to communicate with their families. They were not able to comprehend the formal sign language. Also, the sign language varied between places. The signs were not the same between say Odisha, West Bengal, and Bangladesh.   Further, there was no sign language for SRH. Meandering through this maze of lack of signs for SRH, lack of standardized signs across locations, and the young people often not comprehending the formal sign language was a tough challenge that we had faced. 

So what are our suggestions or tips given the challenges to ensure that we gather their perspectives reasonably well?

  • Plan for a more extended study period 
  • Identify local organizations/ NGOs working with the PwDs in the research locations; train their representatives in the process of obtaining consent; and start the process of obtaining consent one month before the data collection, assuming that it would take a few visits to convince families
  • Undertake a pilot study to understand the context of respondents, their exposure and their worldview of the issue – this would enable inputs for tool development and ensure that they are contextualized 
  • Tool development – keep the questions simple, short, and easy to explain. Have alternate forms of explaining/ interpreting the question readily available. 
  • Undertake one-on-one interactions (rather than group discussions)
  • Recruit a team of translators/ interpreters, if feasible. Else ensure breaks during data collection to overcome fatigue. 
  • Rigorous/ centralized training for interpreters/ translators – extensive mock sessions to ensure consistent use of images/ aids, signs and manner of asking questions  

We are aware that the larger contextual factors impact the active involvement of the PwDs in research. There is a body of work in the American context which enable guidance on ‘conducting accessible research [3]’ and ‘Universal research design to include PwDs [4]’. We hope that some of our suggestions based on our experience help to design research guides and toolkits to incorporate the perspectives of the PwDs in resource-poor contexts. 

[1]  World Health Organization, World report on disability. Geneva: World Health Organization; 2011. Accessed on 15 Sep’19 at http://www.who.int/disabilities/world_report/2011/report.

[2] Williams AS, Moore SM. Universal design of research: inclusion of persons with disabilities in mainstream biomedical studies. Sci Transl Med. 2011;3(82):82cm12. Accessed on 1 Apr’20 

[3] Dianne Rios, Susan Magasi, Catherine Novak, Mark Harniss. Conducting accessible research – including people with disabilities in public health, epidemiological and outcome studies. Am J Public Health. 2016 Dec; 106(12): 2137–2144

[4]  Williams AS, Moore SM. Universal design of research: inclusion of persons with disabilities in mainstream biomedical studies. Sci Transl Med. 2011;3(82):82cm12. Accessed on 1 Apr’20 


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