The Covid-19 pandemic has resulted in many changes to the way in which we do things – disability-inclusive research is no exception. One specific change has been the move to conducting research using remote methods and not face-to-face. However, one key issue that has not received enough attention is how we include persons with disabilities when using remote research methods.
In conducting our own research, as part of the Inclusive Futures initiative, we aimed to better understand how people with disabilities have experienced the pandemic in Bangladesh, Kenya, Nigeria, and Uganda. This, of course, meant including people with disabilities in our remote research. We wanted to share some of our experiences – and maybe even begin to address this gap in knowledge.
Putting the interviewee in the driving seat
With the UN Convention on the Rights of Persons with Disability (CRPD) as a guiding framework, a research design was developed using qualitative methodologies. A narrative interviewing approach was selected, as telling stories is a natural and universal form of communication and enables participants to make sense of their experiences and focus on what matters to them. This puts the interviewee in the driving seat, they decide what to talk about and how.
Participants took part in two interviews, a few months apart, between August and November 2020. This enabled participants to feel comfortable in sharing their experiences and gave them the opportunity to express how things changed as the pandemic progressed.
40 participants, 10 in each country, were recruited with the help of organisations of people with disabilities (OPDs), Sightsavers and ADD International. Participants included people with a range of impairments (e.g. hearing, intellectual, physical, psychosocial, and visual) who were job seekers in the Inclusive Works programme. The participant sample was gender-balanced and included a range of ages and experiences. The data collection process was led by experienced local participatory researchers already working with the team.
The importance of an initial call
The research process involved an initial call with participants during which the research purpose and process were explained, including consent and anonymisation, the right to withdraw, and the analysis and reporting plans. It was also an opportunity to get to know the participant and their communication style and for them to become more comfortable with the interviewer before the actual interview.
It was also important to share all this information with guardians of some of the people interviewed to ensure their comfort with letting the individual speak without the guardian being present. For example, after hearing all the relevant information the mother of a woman with intellectual disabilities in Kenya felt comfortable letting the interview proceed without her.
Establishing access and communication support needs
Each participant’s access and communication support needs were also discussed during this first meeting, so that prior to the interview itself, necessary accommodations for the interviews, such as sign language interpretation or assistants for some people with intellectual disabilities, could be made for them, paid for by us. Participants who are deaf were able to get involved in these initial discussions through emails and messaging services if this was their chosen medium.
Communication with participants with visual impairments involved a combination of phone calls, emails (read using a screen reader) and voice notes. Researchers were encouraged to use communication platforms such as Microsoft Teams or Zoom and use the video function when possible. This was both to aid relationship building and for effective communication, especially for participants who were more reliant on visual communication modes. However, the ultimate decision on which mode of communication they wanted to use, video or phone calls, and in the context of Nigeria, voice notes due to concerns over internet connectivity, was made by the participant based on their preferences, capacities, and access to technology.
Participants were reimbursed for the data costs needed for the interview calls. In Bangladesh, people who did not have access to the needed technology were supported by OPDs to access it for the interview. Participation in decision making about the interview process increased the confidence of interviewees and gave them a sense of ownership of the process.
Use of local language
At the start of the second call, participants were asked for verbal consent to be involved. This gave them time and space after the first call to decide whether to participate. The interview occurred after verbal consent was gained and the participant confirmed that they felt secure and their access needs were being met.
The interview was conducted in the participants’ preferred local language which made it easier for them to feel comfortable and express themselves, with one participant in Uganda saying that he was shocked to be allowed to use his local language (Luganda) because this was the first interview in his view that allowed free expression.
Allowing enough time
The interviewers noted that they made sure to give the participants time to fully express themselves, within the time agreed with the participants for the interview. This included reassuring participants that they could take the time they needed to give them confidence in the process. It meant being patient and not rushing people, for example, those with intellectual disabilities or speech impairments and leaving enough time for sign language interpretation.
Participants were able to share what they wanted without interruption, respecting them and their feelings, making them feel comfortable, and giving them agency over the direction of the interview. Some interviews were interrupted by network issues, so flexibility was needed to overcome this, and some interviews had to be completed in subsequent sessions.
Narrative interview process
Participants were asked to share how the Covid-19 situation had developed for them and impacted their lives. The interviewers reassured them that they could share experiences in any way they liked. Prompts and follow-up questions were used to ask for specific examples or to expand on the key aspects interviewees chose to talk about. Enabling the participants to choose what they felt was important to talk about made the process feel less extractive. It was also important to give them space to ask their own questions about the interview process and the wider programme and interviewers followed up if they did not immediately know the answers to the questions asked.
Experience of the process for people with disabilities
Our interviewees really appreciated the inclusive process of the interviews and the opportunity to share their experiences, reflections, and recommendations. For example, they said:
“Thank you for the discussion. I never thought I could be an analyser. I have been here wondering if this is me speaking!” (man with physical disability, Kenya)
“I am happy I am able to give information and help in a way. It helps someone to feel that the challenges others are facing are common. It is very therapeutic.” (woman with psychosocial disability, Kenya)
“I want to thank the organisers and coordinator of this programme for this wonderful privilege you’ve given to me to hear my opinion and my voice in this research. To the interviewer, SC, thank you very much for your patience and accommodation.” (man with albinism, Nigeria)
“Thank you for involving me and recognising that I can have something to share. You have done it differently from others who never see the abilities of persons with disabilities.” (man with intellectual disability, Uganda)
Their experiences illustrate the importance and opportunities of including people with disabilities in research. With waves of the pandemic continuing around the world the need for disability-inclusive remote research continues and our experience illustrates that the challenges of doing so can be overcome and are not an excuse for further exclusion.