How community-led research can help unpack the cultural nuances surrounding medical scepticism and hesitancy
By Shaun Danquah and Marcus Tayebwa
Shaun is Head of Engagement at TSIP and Founder of the Community Research programme and Marcus is one of TSIP’s longest-standing Community Researchers and a social entrepreneur specialising in technology and the future of research methods.
There is a laser-like focus on medical scepticism within the urban locale regarding the Covid-19 vaccine that has recently been rolled out as a curative response to the coronavirus pandemic. Recent media attention has focused the spotlight on the black community in particular as being distrustful of government measures and hesitant or unwilling to take the vaccine or accept it when offered. A recent poll conducted by the Mile End Institute at Queen Mary University of London showed that just over a third of Black and Minority Ethnic (BME) Londoners (39 percent) say that they are likely to take the vaccine compared with 70 per cent of white Londoners. Additionally, many are saying not enough has been done to make specific efforts to focus on these disproportionately affected communities.
This distrust of the vaccine will surely slow down government intervention as a whole and generate a divisive atmosphere between those who trust vaccines endorsed by both private and public healthcare and those who do not. Objectively, there must be a reason for these conflicting attitudes and a lack of faith, which reflects culturally diverse communities and their differing historical interaction with public healthcare.
RETHINKING RESEARCH IN THE URBAN LOCALE
Our approach to rethinking research utilises the cultural equity of community members upskilled as community researchers within their local urban environment in order to unpack the cultural nuances and insights that exist off-script, off-stage and away from the mainstream. We have coined this approach the ‘Wenger model’ which is based upon the ex-Arsenal Manager’s uncanny ability to identify and refine world-class talent, who were raised in underserved urban locales, and often of immigrant background. Wenger’s legacy is embodied in this quote: "Soon, one of England's most traditional and conservative footballing institutions would be transformed into a model of racial and multicultural integration.” Arsenal was the first truly globalised English football team that was reflective of the cultural diversity that had become the hallmark of communities in the urban locale by the early 2000s. This is also relevant in the context of cross-cultural dexterity, which we define as having an ability and an understanding of how best to interact with people from various cultures and backgrounds, in our efforts to penetrate the nuances of the urban locale.
In light of this, it would behove us to critically examine and analyse what we mean by ‘black community’. There is no one voice that homogenises the black identity just as there is no one size that fits all – as stated by Shaun Danquah & Paul Addae in their paper Black Community Nuances and the Urban Distrust Nexus. They wrote: “The problem is that if we fail to adequately understand the dynamics within our communities, it will lead to increased distrust, weariness and scepticism to engage in both research and positive initiatives for change”. The ‘Black Identity Nexus,’ coined by Danquah and Addae, examines the cross-cultural interplay within the black community that exists off-stage from mainstream awareness. This contributes to a lack of nuanced interpretation of the black experience at large. Objectively speaking, this is an area of current affairs that requires further research, in order to reform attitudes, norms and systems that are too outdated to engage the urban locale effectively.
By deepening research into the academic gap between urban social research and public health systems, we can better identify the value dissonance unexplored between the youth of the urban locale and their elders.
Differences in experiences with the public healthcare system over the years, in tandem with emerging social trends, influence the spectrum of distrust with members of the Black, Asian and minority ethnic (BAME) community. There is now a divide in intergenerational attitudes and level of cynicism towards the state, where there is generally a higher level of cynicism from the youth, often voiced on online platforms. Furthermore, there are of course savvy internet users who are aware of fake news and misinformation, but there are still many groups, especially young people, who are consuming much of their content online who don’t have this natural ability to spot fake news. There are also those groups who are still partial to traditional media outlets - which historically also purvey generalised propaganda – who are also faced with confusion around what to believe, which further fuels hesitancy.
INCREASING MEDICAL SCEPTICISM AND VACCINE HESITANCY
It is worth examining the correlation between the overwhelming media narratives, the struggle to find truth in them, and BAME medical hesitancy towards vaccines. Vaccines are increasingly being viewed nowadays with suspicion, which is something Maya Goldenberg has explored extensively in her academic writings and in her soon-to-be-published book Vaccine Hesitancy: Public Trust, Expertise and the War on Science. For the BAME community, in particular, there are historical and environmental factors that underpin their medical hesitancy, which is typically off-script and poorly understood. The medical mistreatment of the black community by the public healthcare system has been well documented (read some pieces here, here and here), as well as critically examined in Harriet A. Washington’s Medical Apartheid, which has led to great discussion within the black community.
The institutional volatility between the black community and the state provides the context for why medical hesitancy is present. Ripple effects of this institutional disconnect do carry. Sections of the BAME community have always had a reluctance and hesitancy toward the public healthcare system even before the outbreak of Covid-19.
As for BAME youth, the lack of culturally nuanced mental health support that they receive has both directly impacted their relationship and perpetuated their mistrust with public healthcare. A report published in 2016 on the youth justice system in England and Wales found that over 40% of children in the youth justice system are from BAME backgrounds, and more than a third had a diagnosed mental health problem. The issues around mental health and BAME youth have begun to be explored (see here, here and here), but effectively engaging this group requires a disruptive approach, and a deeper exploration is needed.
Another significant factor that is overlooked in accurately understanding medical scepticism is in understanding the influence of ‘counter-public spheres,’ which are localities where a harbouring of weariness towards the system exists. Brixton and Peckham have historically been ripe examples of such. As discussed by Addae and Danquah in their paper Brixton Counter Health Publics: “Brixton was revealed to be a conurbation of myriad counter-public spheres, largely due to the presence of a sizeable black community, which spanned a few generations coupled with global resistance identities and narratives which found fertile ground therein.” Furthermore, “it is within these counter-public spheres that counter-narratives regarding healthcare often exist with strong scepticism towards healthcare systems, providers and guidelines.”
Not recognising the importance of the contextual factors that perpetuate and influence medical scepticism can lead to inaccurate reporting and scaremongering – comparable to the ‘black mugger’ media-driven stereotype in the 70s identified by Stuart Hall et al.
The sensitive nature of the Covid-19 vaccine programme, and the life-or-death situation that it is framed in can lead to very palpable fear across all communities. This fear may, in turn, ostracise those who are already medically sceptical - especially those within the BAME community - because they may be seen as the percentage of the population that are preventing progress.
A COMMUNITY-LED RESEARCH APPROACH
It is therefore imperative that as a community, we embark on this research journey to uncover the real, deep and complex nuances existing below the radar. Objective urban social research will empower these voices by providing a platform for people to share their authentic narrative of what is happening at a local level - as a counterbalance to the media zeitgeist dictating public perception.
Our community research approach is built on our community researchers having the accessibility, positionality and credibility within the urban locale to conduct academically insightful and rigorous research. This allows us to use informal networks as part of an insider approach to research. Using our disruptive model, we leverage emerging mediums such as Podcasts, Whatsapp, TikTok and Snapchat stories, as well as methods such as online content analysis, deploying street-based media teams and mapping those that are vocal and influential offstage.
There is no point chasing an outdated trail of research methods when engaging an ever-evolving community. Adapting our research and engagement approach to the reality of what’s happening on the ground today means we’re able to tap into the voices that have historically gone unheard. Through opening up this conversation within the urban locales steeped in the lived experience of what is being discussed - I opine that there are significant differences and nuances between anti-vaccination attitudes and that of medical hesitancy. This is something that needs to be explored further. Objectivity is key.
IMPORTANCE OF LISTENING TO YOUTH VOICE AND SUBCULTURES
In addition, we are looking at the interplays between urban social research, academic research, public health and social sector research. The analysis of BAME youth and their medical hesitancy is a very relevant emerging nuance on its own. Engagement with BAME youth regarding vaccinations is an important area to consider, especially in light of the mass racial awakening that came to a head in the summer of 2020 – much of which was spear-headed online. As many will recognise, this was something that both mainstream media and many institutions were arguably slow to grasp the severity of but have since made some cultural shifts towards creating progress to tackling systemic racial inequalities. That said, further action is needed and still being called for. This institutional rethinking of how to equitably engage minorities through proper understanding of their off-script subcultures is something that public healthcare should take great consideration towards.
It is important through urban social research that we are not only looking at the insight and nuance coming from the urban locale but also getting an understanding of the street sub-culture that is at the core of these locales. This subculture is rooted in feelings of exclusion from the mainstream, which in turn, amplifies feelings of medical scepticism from black youth.
From the perspective of urban anthropology, an essay ‘The Code of the Streets’ written by social scientist, Elijah Anderson et al, speaks to this as an issue of respect - which is to them a "third party entity that is hard-won, but easily stolen". He depicts that this is "the code of the streets which amounts to a set of informal rules governing the personal behaviour and a protocol across the locale."
Our community research model is in a premium position to do this research, and we are excited to pursue such world relevant insights. It is a very fulfilling mission for us to be black men from the locale, embarking on our journey toward social good. We feel as though we have woken up the concrete by identifying the right individuals, within the urban locale, to bridge this academic research gap. This understanding is the missing piece in the comprehension of medical scepticism within the urban locale, especially within the BAME community.