I like your hat. A window on virtual research in a pandemic.

I like your hat, really suits you… (me)

I like your jumper, lovely colour…(Neema)

Thanks for joining and doing this interview…(me)

I nearly didn’t. I don’t like new things, since my stroke I’m nervous of talking to people I don’t know. I am worried about getting things wrong (Neema)

Neema was 22 years old and a stroke survivor. She looked nervously at me through a zoom window, providing a small portal on her life. We were doing an online interview instead of face to face, like so many, COVID-19 had disrupted our ability to talk in person.

This was now our virtual life. I was present in the research process but not really present, interviewing Neema about receiving an online neuro-rehabilitation service set up at the start of the pandemic. The term ‘new normal’ has been overused and worn out. But Neema was already navigating her ‘new way of being’ when she experienced a sudden interruption of blood supply to her brain and a subsequent stroke. This ended her college studies, her social life and her plans for the future. She was now living with her own unique stroke, her own unique pandemic, and her own unique set of challenges.

Neema smiled back at me, and tentatively agreed to answer some questions. She apologised for being late to join and said it was because she was writing herself some notes. Her stroke had affected her speech and memory but mostly it had impacted on her confidence to interact, particularly with people she didn’t know. Her mum had encouraged her to take part in our study. She eventually agreed to be interviewed because she wanted to try and tell her story but apologised in advance for her memory and speech.

Narrative interviews, semi-structured interviews, non-participant observations, focus groups are all widely used in qualitative research to explore experiences of health, illnesses and healthcare. Methods that help us to watch naturally occurring interactions, hear about individual stories and unmet needs or gain a group consensus on priorities for change. Yet the pandemic had made us question how our research or stakeholder activities can take place. Before the current pandemic researchers were already using online methods. But how does the quality of data and experiences compare to face-to-face methods?

A review by Davies (2020) highlighted some limitations of online methods. Including the increased likelihood of a desired sample, shortened responses, less contextual information and relational satisfaction. Also, how to achieve the level of connectedness so that a participant feels safe to share personal or sensitive information. This seems like online methods are always going to be second best to in-person. But does a participant feel less trusting of the interviewer? Surely the same relational security is needed for an in-person interview. Also, online methods can offer the potential to connect with a broader range of participants, expanding the reach of research to different populations.   And although it’s only a small zoom window, it is nonetheless a window on their life and home. Not something we can see if interviewing in a clinical setting.

The COVID-19 pandemic has brought increased social isolation for women like Neema. But if ever there was a time to connect and learn from people living with a health condition then it is surely now. But many have observed how the voices of patients and their experiences during the pandemic have been tuned out. And whilst decisions had to be made fast, expert advisors rarely included those with expertise rooted in lived experience (Richards et al, 2020).

Our projects with people experiencing stroke, living with progressive neuromuscular conditions and life limiting conditions such as cancer needed to continue and were ever more vital to complete. So, like others we experimented with online platforms, break out rooms, virtual white boards and many other methods. We carried out semi-structured interviews, held focus groups and used co-design methods to explore what life was like. We asked questions about how they wanted their care to be organised and what would be helpful for others in a similar situation, all in the context of this pandemic. We have found that rather than being difficult to recruit people to projects we have had to turn people away, and once they had online access most were keen to share their story, to feel as if they were making a contribution. The data were abundant, and the stories were powerful. Planning and preparation was critical, and we made mistakes in the beginning like everyone else.

Neema was looking at her notes and trying to remember what she wanted to say about her online rehabilitation. She worried that she was taking too long. I reassured her that every moment was valuable, and this was just about the two of us having a chat. She told me the support to get through the technological steps had been critical. But the rehabilitation team had been kind and patient with her – coaxing her to join. She preferred smaller group sizes and she got the most from listening and learning from others. She liked hearing about their progress instead of having the spotlight on her. She had felt pleased when other participants noticed her speech was improving and had gradually started encouraging others in the group. She started to connect, they had things in common. She told me about something that helped her feel more like everyone else…

‘in the first group, us three women and then the lady who was running it… We all found out that we had twins in our family and that was so funny. Yeah, like one of them was married to a twin. One of them was a twin. Another lady was a twin and I have so many twins in my family. And we started laughing. That was nice’

We ended up chatting for over an hour, and Neema told me she was relieved she had persevered and joined the call. We gained a unique insight into the experiences of a young woman living with  the consequences of a stroke during a pandemic and how it felt to receive online neurorehabilitation. We ended with an apology from me for the portal on my life, a slightly messy room and a noisy family. I then asked her where she got her hat.

Author: Professor Fiona jones  @jonesfio

References:

Davies L, LeClair KL, Bagley P, et al. Face-to-Face Compared With Online Collected Accounts of Health and Illness Experiences: A Scoping Review. Qualitative Health Research. 2020;30(13):2092-2102. doi:10.1177/1049732320935835

Richards Tess, Scowcroft Henry. Patient and public involvement in Covid 19 policy making. BMJ 2020 370 :m2575