Angela Wearn, PhD Researcher, Department of Psychology, Northumbria University
“You tend to find the ones that are protesting and telling you to go and get your smears are the ones that have their cushy little jobs and that lovely flash car that they can just jump in and dive down to the doctors”
From all the conversations I’ve had throughout my research career, this is one of the quotes that has stuck with me the most. For over three years I have been working on my doctoral research, conducted across Newcastle, which explores barriers to cervical screening participation in areas of high relative deprivation. We know that uptake rates tend to be lower in areas of socioeconomic disadvantage
, but reviewing existing literature showed very little insight from women who lived within these communities themselves. Incidentally, I am one of these women. I grew up, and still live, within a neighbourhood which, according to the Index of Multiple Deprivation
, falls within the 10% most deprived areas in the country. It’s therefore no accident that I ended up with a programme of research which aimed to prioritise the voice of this community.
Graffiti walls can be a simple and effective way of starting conversations
Initially, I had dreams of a wonderfully participatory project, where I formed a steering group and we worked together to find answers and seek solutions. As often happens in research, time ticked on and it didn’t work out the way I had planned. My participatory ideals had to take a backseat for a less time-consuming participant-researcher approach. I suspected my ‘insider’ status might open doors for me and to be fair, it did. I found myself being able to quickly connect and build a rapport with others when I discussed my own background and why I wanted to do this project. However, getting to the point of even having these conversations was by no means easy. I spent days, weeks, months trying to speak to community groups, charities and community members about my research. Some were very open and interested, others were not. I attended community get-togethers handing out cakes alongside research information, making ‘graffiti walls’ with post-its, even chatting about life over freshly made biryani at a cookery club. Actually, these were the most rewarding and enjoyable moments over the past three years, but the more I did this the more I felt I was straying from what academia expected of me. I also began to feel my status as an academic researcher was a hindrance to what I was aiming to do at community level. For a lone PhD researcher, bringing together these two worlds, at times, felt completely impossible.
"community get-togethers...were the most rewarding and enjoyable moments over the past three years, but the more I did this the more I felt I was straying from what academia expected of me"
Attending community events was a great way to connect with
people who were otherwise unfamiliar with research
The quote at the beginning of this blog was when it all clicked into place. Although we were talking about cervical screening, I acknowledged something that I had already known all along - the same issues of accessibility and trust apply to involvement with academic research. If I put my working-class hat on for a minute, academic research feels neither accessible nor promotes interpersonal trust. From the outside, academia appears to be filled with people who think they know better than you, patronising you, sometimes even using you to showcase the poor decisions people make in life. I had to work hard to reassure people that I wasn’t there to pass judgement on their screening status. I’m still not sure many believed me. ‘Eat a healthy diet’, ‘Stop smoking’, ‘Engage in physical activity’, ‘Attend your screening appointments’. These are the messages that come through, focusing on the individual and discounting all the structural and social barriers that exist for people living in communities like mine. If you are trying to figure out how to afford the weekly food shop, the kids have come home with a tear in the coat you only bought a fortnight ago and you’re worried about not getting enough work from your zero hours contract, there is no mental space for ‘living your best life’ (and certainly no space for sitting with a stranger from some university taking part in a research study).
Those living in socioeconomically disadvantaged areas are often described as ‘hard-to-reach’. This often implies that despite best efforts to reach out, these groups are disinterested and disengaged. I tend to believe the reverse is true. Some groups are hard to reach because academic research is too disengaged from the community. I know of many academics who are so obviously committed to tackling the avoidable and unjust disparities in health, and for this reason I do feel positive for the future. However, as someone who is positioned in between the ivory towers of academia and the working-class neighbourhoods at home, I know there is still a lot of work to do. There is a long history of mistrust and marginalisation to put right. If we are serious about tackling inequality and involving so called ‘hard-to-reach’ groups in research, then we need more focus on developing trust and togetherness…and occasionally, this might mean leaving traditional academia at the door.