Virtual narrative interviews to understand the lived experiences of people with disabilities
This case study reflects on the methods used in a research project exploring COVID-19 related experiences of disabled people and their families in Bangladesh, Kenya, Nigeria, Nepal and Uganda. Narrative interviews generated storied responses, focussing on respondents’ priorities, which enabled us to hear what was most significant for them and their families. Across the five countries 75 participants were interviewed online or by phone by 7 local researchers (3 of whom had disabilities themselves), with appropriate inclusive support. Nearly everyone was interviewed twice to capture the progression of impacts over time. The data was analysed thematically through a virtual participatory approach.
The research was funded by two FCDO (UK Aid) funded disability-focused consortium programmes, under the Inclusive Futures banner: ‘Inclusion Works’ and ‘Disability Inclusive Development’. IDS was a research partner in both these consortia. It was undertaken collaboratively by teams of international and local partners working together, including Organisations of Persons with Disabilities (OPDs).
What happened
The research team chose narrative interviews because people naturally communicate by telling stories and this method is accessible regardless of education level, language competence or communication mode.
Pragmatically, conducting virtual narrative interviews was possible (online or by phone), making research participation safe for the interviewer and interviewee during the pandemic. We were guided by the work of Holt (2010) who had shown how it is reasonable to use technology to conduct narrative interviews remotely when it is not possible or practical to engage in person.
The research team were already collaborating with four local researchers. IDS recruited new team-members in Nepal and Bangladesh, including two inexperienced researchers with disabilities who were paired with more experienced researchers who supported and mentored them. Working with the partners, the IDS team developed the research processes and materials, provided training and supervisory accompaniment for the local researchers, and facilitated the analysis process.
The team perceived heightened ethical risks compared with face-to-face interviewing, such as the additional difficulties of reading dynamics or responding supportively if strong emotions arose. To mitigate these risks the research process involved three calls with each interviewee, who did not know the interviewers, during the first interview round. Firstly, the research purpose and process were explained, including consent, anonymisation, the right to withdraw, and the analysis and reporting plans. Participants were not asked to give verbal consent until the second call. This gave them space to decide whether to participate without being pressured. Participant’s access and communication support needs (e.g., braille documents, sign language interpretation or sensory communication support) were also discussed at this time, which enabled necessary accommodations to be organised for the interview. Ethics approval for this work was obtained from institutional ethics committee.
The interview was conducted in the second call, after verbal consent had been obtained. After an initial introduction, a narrative interview process, as described by Jovchelovitch and Bauer (2000), proceeded by asking one very general and open question about 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 but encouraged the story-form by suggesting they start at the beginning, when they first heard about the pandemic, and then relate what happened afterwards up to the present. Prompts and follow-up questions probed for specific examples, and expansion on the key aspects that interviewees chose to talk about. For example: ‘you told me about…..Can you tell me more about that?’
A third call was made later to ensure that the interviewee was feeling alright and still happy to be involved. A second interview, which was conducted by the same interviewer about two months later to see what had changed. It followed a similar process, and as anticipated the interviewers found greater openness and narrative flow due to established relations between the researchers and participants.
In all countries, additional training on the narrative interview approach was provided to the interviewers during several online participatory sessions. Additional support to the in-country researchers was provided during the data collection period, with each having a junior and senior mentor from the UK research team to link with at any time. Check-in sessions were provided, as well as introductory training on analysis after the first round of interviews before the main analysis sessions at the end of data collection.
Researcher training included input on dealing with sensitive issues and communication needs for different impairment groups. The team encouraged researchers to use online video platforms (in preference to just audio), when possible, to aid relationship building and effective communication This was particularly important for some, such as the intellectually disabled participants, who may rely more on body language, gestures, or facial expressions. However, the choice depended on participants’ preferences, functional skills and access to technology.
The team had initially anticipated conducting a participatory thematic analysis process face-to-face in-country with the researchers and some participants. However, this was not possible due to ongoing COVID-19 restrictions (within countries and international travel).
Instead, IDS conducted online collective analysis sessions with the in-country researchers. After thematic analysis training, interviewers shared selected narratives, which both local and UK-based researchers reviewed. During online sessions, each researcher generated themes individually, shared them verbally, and documented them for cross-country comparison. These were clustered using tools like PowerPoint and Jamboard to produce an initial analysis. Overarching themes—such as gender, impairment aspects, emotions, and economic impacts—were synthesized and applied to further interviews. The process was repeated after second interviews, validating earlier findings and identifying new or evolving themes. Finally, the team mapped connections between themes collaboratively, ensuring that the synthesis reflected local viewpoints.
The team held joint online participant validation and sharing events for interviewees in pairs of countries (e.g. Bangladesh and Nepal and Uganda and Kenya together), after some interviewees had expressed an interest in meeting other participants and hearing about their experiences. The team had anticipated and indeed found that an online process like this is complex.
It sometimes involved translation between 3 languages, as well the different access needs for some of the participants with intellectual impairments, deaf-blindness and deafness to be carefully considered and accommodated. However, participants enjoyed learning about each other’s experiences and generated interesting questions that were addressed in the meeting. They also validated the thematic analysis and elaborated on some of the data already analysed.
Findings and new knowledge
An overarching ‘subjective’ theme of feelings experienced by the participants was labelled ‘destabilisation, disorientation and uncertainty’. The team also identified ‘concrete’ or material impacts. People experienced various dilemmas such as choosing between securing food and keeping safe, and tensions between receiving support and feeling increased vulnerability or dependence, with interplay between the emotions of fear, loss and hope.
The team found both the concept of liminality and grief models productive in understanding the progression of participants’ experiences. Disabled people reported the same feelings, difficulties and impacts as others, reported in other literature, but often their pre-existing disadvantages have been exacerbated by the pandemic, including poverty, gender and impairment related stresses and discrimination, inaccessible services or relief, and exclusion from government initiatives.
Lessons
Narrative interviews are shown to be suitable to undertake virtually – but when engaging with people with disabilities, accessibility must be considered. Narrative interviews are most effective when the goal is to explore experiences in depth rather than breadth. They are well suited to situations where personal meaningmaking and relationships are central to the enquiry. They work particularly well when participants should lead the conversation and when flexible formats—such as remote interviewing, repeat interviews or accessible adaptations—are needed.
The method is less suitable when highly structured or largescale data is required, when there is not enough time to build trust or develop a prolonged participant/researcher relationship.
However, in this project, this approach was harder for inexperienced researchers than more conventional interviews with their set structure.
Additionally, interviewing people remotely using online platforms or phones, can be limiting and unsatisfactory for some participants and for some interviewers. Although great efforts were made to ensure that the process was inclusive and accessible, the team recognise that it was less so than a face-to-face process would be and excluded some potential participants who did not have access to this technology.