This post is my full reflections of my experience as a first time Community Researcher on the project Engaging Marginalised Communities: a community research project

January 2024-March 2024 | Supported by The Clare Project

Reflection

This was my first experience as a community researcher. I research in my spare time on health related topics, both for personal use and for projects I work on, but I have never been officially  involved in a research study style of research. I was interested in learning more about it, improving  the skills I have and developing new ones. However, I don’t feel like that has been the experience I have had.  

In summary, I feel like access was not a priority and it required a lot of pushback and questioning from myself, other researchers and TCP to improve the project. If we had been more directly involved from the beginning, a lot of these issues would have been resolved faster or before they became an issue.  

This role was sold as a learning and collaborative experience. I really had to push and ask for assistance from TCP to be listened to. As a multiply disabled trans person, this project has really lacked on both sides. 

There were in-person training sessions already set up in Brighton, no COVID precautions in place, and no checking in with people’s access needs before deciding where the location would be. There were also last minute room changes that had not been communicated to the researchers directly. Considering this project was also specifically about researching outside of Brighton & Hove, having these training sessions in person seemed counter intuitive. COVID precautions should remain an important part of community research, as I am immunocompromised attending in-person without precautions put in place or enforced is a health risk to me, COVID is a large health risk to all communities we were talking to as they are all most likely to contract it, most likely to become seriously ill from it, and most likely to be unable to take time off from work to recover. I do not believe the safety of all participants (including staff and researchers) was taken into account. 

It seemed like there hadn’t been enough training taken on by the people leading the research to be aware of the above, nor be aware of issues relating to someone’s gender. I witnessed misgendering within the space as well as trans people’s names being confused for each other multiple times. Considering the researchers were made to sit through 6 hours (possibly more) of training specifically about marginalised groups of people and how to communicate with them, it didn’t seem like this training had been undertaken by some of the leading staff. 

Much of the training above was not relevant or necessary for me personally to sit through, they were all reasonably basic introductory sessions. I understand the purpose for this training to be done, but I did not feel it was necessary for me generally. My participants all ended up being white trans people with similar disabilities to myself. The disability aspect was never actually covered in the training, which I find interesting and concerning. 

The training on research skills specifically lacked for me. I brought up concerns quite early that the timeline was very short and I didn’t think we would get through all the training, plus the collaboration aspect, before the date the interviews were expected to begin. The interviews were eventually postponed slightly. However, much of the training didn’t seem to cover important skills, and many sessions had to skim over the researcher aspects due to over running and not planning enough time for all the training deemed necessary. I feel like the people with no experience of research and people who were not academic were not supported by the main leaders of the project, as we were expected to ‘just know’ what to do, forgetting access needs and experience levels entirely. 

The communication throughout this project was poor on many levels from many people. I often felt more confused after each training session and had to work with TCP to try to understand what was relevant to me and my part of this project. This wasn’t helped by masses of physical and digital documents being given to me, many digital documents were initially just the slides which did not explain much of the important steps necessary for working on the project. There were also many documents given to us not related to this project at all with a lot of focus on us recruiting people to be part of the research network or trying to recruit us, which was not part of the initial call out or first meeting in December. 

It hadn’t been well explained to me who was involved in this project. I did not know I was awaiting contact from someone in 3VA until my supervisor from TCP mentioned this to me. It appears this person was off sick for weeks with COVID and this had not been reported to us, luckily TCP and myself were working on recruiting participants anyway. I was not aware there was another party in charge of recruiting. In some ways I was lucky to not have this involvement as the other researcher working under TCP ended up not having all trans participants. I am not sure how that was possible or how that happened when we were brought on to interview trans people specifically. There were other researchers brought on to interview LGBQ+ people. Due to this, I am glad I and TCP had more control over who participated in my part of the research. 

The collaboration I expected to happen did not happen until pushed by researchers and the linked charities. In my particular circumstance, I flagged issues I had with the questions we had been given several times. I expected to be more directly involved in creating the questions so that we could vet and edit them to be more suitable to who we were speaking to. One draft of the questions used gendered language which would not have been appropriate for my interviews with trans people. Generally, there were too many questions to fit into 30 minutes, and many of the questions did not fit the purpose of the research: how can we encourage marginalised communities to participate in healthcare research? I struggled to understand why we were not focused on this in particular, and due to the lack of clarity in training around research skills I didn’t know the difference between leading questions and clarifying questions. I am still not entirely sure on this point in practice. 

I personally stopped attending the training sessions due to the issues above as well as my general health. I felt like I was not learning anything helpful, I was wasting my time and energy generally, but also wasting the paid hours budgeted for me by being there and then trying to work out what was important for me to take on board. As a chronically ill person, my health varies and my energy levels vary. There was not enough time budgeted in this project to truly involve me appropriately. I cannot work as long or as many hours as other people can. 

I do not believe 50 hours per researcher was enough for this project, and neither was a deadline of early March. We needed more calendar time to work around people’s access needs as well as their work/personal life schedules. We needed that time to work as a group to collaborate on our ideas for the project rather than listening to lecture after lecture with no input. We needed a space to be able to work with the other researchers, to discuss our concerns and confusions, where we could have supported each other if someone had more experience and help guide them, or to support each other in bringing concerns to the leading roles and being able to list names or give numbers of other researchers who also had the same concerns. I often felt like my questions and concerns were not listened to as I flagged them alone by email. But when they were flagged in training sessions and other researchers also had the same concerns, or I brought these issues up to TCP they were also concerned about my experiences, that’s when things were changed, even though not well for the most part. 

The researchers spent a lot of time advocating for ourselves and our future participants as there was a real lack of intersectionality and inclusion thought about in all stages of this set up. This would not have been so damaging to timing and completion if the researchers were involved in these things from the start, and we had used our training time more appropriately. I feel we would have learned more and faster if we were more actively involved in the creation of the project, starting with the questions we were asking. 

When it eventually did come down to the training on research specific skills, too much content was packed into the sessions again, not really allowing for questions or discussions, researchers were not asked how we learn best to optimise our time and how we use it, and much of the skills were not explained in a way that made sense to people with no experience. We were also given an extremely tight deadline to pick up these skills for interviewing, as well as the skills for analysing the data to turn into a report at the end. I have never coded and themed transcripts. This is a more complicated process for me as someone who isn’t particularly academic in a traditional sense, neurodivergent (ADHD, Autism, and dyslexia), and chronically ill to fit into such a short amount of time. It was also not as straightforward to write the report. I needed lots of extra assistance and I don’t think I could recreate a report in the ‘right style’ even now I have completed one. 

It was not thought through to require participants to provide consent to being recorded before the interview itself, and at one point when this was brought up, the researchers were told that if a participant doesn’t give consent then they would just need to do their best to make notes. This is another failing of access being considered by this project and something I had to arrange separately with TCP LW, to gain consent before the interview as I would not be able to cognitively conduct an interview and make notes, nor would I physically be able to do so. I needed prior consent, or the planning to arrange someone to be a scribe. 

The transcription was another hurdle. We could have done with a budget to get the audio professionally transcribed, because doing it ourselves would have taken many hours (which then had to be budgeted for anyway for those who could not transcribe their interviews as they weren’t Spoken in English) and Otter only transcribes up to 3 30 minute pieces of audio on the free setting, or would take several days to receive a copy from Terry. Otter is also not easy, simple, or straightforward to use and that took up more time than necessary. At the time of writing this report there is a service that would have been really useful to have been budgeted for and would have cost less than the researchers’ time. It is Academic Audio Transcription Ltd. (academicaudiotranscription.com) who are created and run by disabled people, and is a great work opportunity for many disabled people. Supporting a business like this would be a step in the right direction overall, but also supporting the people working on research studies like this one. 

I do, however, feel incredibly lucky to have had LW as my connection and supervisor from TCP. They were very supportive, understanding, adaptable and helpful in doing what was possible to make this project more accessible for me. 

As someone who did not get enough support in school to thrive in topics I might have been very good at such as science, I was excited to enter this opportunity to learn. Much of my passions reside in helping people and making a change in how our country works, particularly the NHS as a frequent flyer. 

I hoped this role would be an opportunity to learn more. I don’t feel like I learned anything I didn’t already know. I learned that access is not a priority. I learned that intersectionality is also not a priority, even within research about marginalised groups and communities. I felt more like a number in a room or a tick box exercise than a person working on a collaborative project. This is what marginalised people feel within NHS settings and research/academia. If the NHS and research/academia cannot hire and treat their marginalised staff/workers with decency, how could they treat their patients or participants that way? 

This project was unnecessarily stressful for myself and my participants. It was reflective of my  own experiences within the NHS and academia. Continually advocating for my needs and rarely being listened to, whilst being placed in more and more stressful circumstances. There were numerous times I almost quit this project entirely. There are many reasons disabled and trans people are not often working within the NHS, research or academia. They are systematically set up in a way to exclude us, and that is true for this project as well which was meant to be about including marginalised people and communities. I have a lot of things to say and a lot of thoughts on how we can improve the NHS, research and academia, but are you willing to listen? 

Artie Carden (they/them)