Angharad Butler-Rees and Stella Chatzitheochari
While scholars have increasingly documented and reflected on their approaches to conducting research during the pandemic, little is still known about the impact of social distancing measures on qualitative research with disabled young people.
Our new paper provides a methodological reflection on undertaking qualitative research with disabled young people as part of the Educational Pathways and Work Outcomes longitudinal study. Our study started in March 2021 during the third national lockdown in England. Due to social distancing measures in place at the time of commencing, it was necessary to revise our original plans to conduct face-to-face interviews with disabled young people and conduct online interviews instead. We conducted a total of 35 online interviews with autistic, dyslexic, and physically disabled young people aged 15-16 years old.
The internet has long been deemed as a potentially empowering platform for disabled people, connecting isolated individuals and ensuring access to social, civic and community life. Our focus on young people was particularly useful, as this population tends to be very comfortable with the use of technology. The extensive periods of enforced home-learning during the covid-19 pandemic had further increased young people’s familiarity with online communication platforms, rendering the idea of online interviews a far less daunting prospect. However, it is worth noting that online tools can also present a number of accessibility barriers e.g., poor text layout, little colour contrast and limited keyboard functionality. These were important factors to consider when designing online interviews for our project.
Accessibility has to be incorporated into every part of the research process when working with disabled people. To put participants at ease prior to their interview, we sent them participant information packs as well as a short video of the interviewer introducing themselves and the study. Familiarity with the researcher was greatly valued for autistic young people, making them feel more at ease. Previous literature has suggested that autistic young people may be disconcerted or unresponsive in encounters with strangers, so building a degree of initial trust and rapport was of upmost importance for successful interviewing. In line with this, we also arranged online pre-interview meetings with participants and their parents to build rapport.
Pre-interview meetings also helped us ensure that any accessibility requirements were put into place. We asked participants to choose their preferred communication platform. Several participants opted to use assistive software during their interview e.g., enabling captioning, magnification or modifying volume. Other adjustments included allowing participants to sit off screen or to keep their cameras off while the interviewer remained visible. This made interview far less intrusive and anxiety provoking and was greatly valued by autistic participants. Other adjustments included the presence of a guardian that could provide practical assistance or emotional support, simplification of interview questions, as well as collection of data over several interviews as opposed to one. Overall, we felt that these adjustments made interviews considerably more accessible for disabled young people, ultimately giving voice to a population who may not always be amenable to conventional face-to-face interviewing methods that can be experienced as more restricting and demanding.
Challenges during Interviewing
While some young people were very comfortable in engaging with the interview process and narrating their lived experiences, others were far more hesitant, requiring regular prompting and reassurance. The online medium made this slightly more challenging for the interviewer, with prompting and encouragement occasionally leading to cross-talking. It was also notably more difficult to interpret emotion and body language online, while the loss of internet connection at times affected the flow of the interview.
Another challenge was the difficulty in maintaining participants’ attention. We sometimes felt that the lack of physical presence meant that participants were far easier distracted by being in their homes, e.g., checking their mobiles, playing with family pet. However, we also recognise that this may be interpreted in a different manner: Indeed, it may be indicative of a greater share of power afforded to disabled young people in online settings. Overall, we did not feel that such distractions affected the quality of our data collection and think that the physical distance may have aided disclosure of personal experiences. A feedback survey confirmed that participants enjoyed the use of the online medium, with the vast majority requesting online interviews for the future waves of data collection.
A final note on accessibility
Our reflections may not speak to studies seeking to interview disabled young people with different accessibility needs such as speech or communication difficulties (e.g., stammering). These participants may find online communication more difficult due to possible misunderstanding and difficulties in lip reading and interpretation. Similarly, it is worth noting that interviews can be experienced as particularly exhausting by some disabled young people, whether face to face or online, preventing them from taking part. Researchers may consider offering alternatives such as email interviews alongside conventional online interviews.
Our overall experience with online interviews was very positive. We were privileged to be able to access disabled young people’s lived experiences during an unprecedented period of global disruption. Notwithstanding the challenges mentioned above, we feel that online interviewing is a valuable tool that should not be viewed as second best to face-to-face conversational methods. We therefore encourage researchers to explore the use of online methods, especially with regards to young and disabled populations.
Read the full article here: Giving a Socially Distanced Voice to Disabled Young People: Insights from the Educational Pathways and Work Outcomes Longitudinal Study