Health Communication and Inequalities in Primary Care Access during the COVID-19 Pandemic among Ethnic Minorities in the United Kingdom: Lived Experiences and Recommendations
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Study Setting and Participants
2.3. Data Collection and Analysis
3. Results
3.1. Health Communication
3.1.1. Communication Source and Preference
(information sources include) the World Health Organization, and so we’ve got family in the Caribbean, so we have access to some of the things they’ve been saying. And it’s looking at, like, why are they saying the things that they are saying? So, over here, we kept saying stuff like “common sense”, and it’s like, “no, it’s not a valid reason to do anything”. But other places were saying things like, “we’re doing this because the research currently says this”. So I was like, “Ok, that I can take on”.—African-Caribbean
I think if you’re competent with the digital way of doing things, you can access a lot of things. Sometimes it’s a bit tucked away. It’s in like the Gov sites, or it’s in the local authority sites, or one of the sites I’ve used… but it’s knowing where to look… But if you’re more vulnerable, like if you’ve got special needs, or if you’ve got a disability or language barriers, then accessibility is quite tough… I’ve noticed in my kind of community or my elderly relatives where they’ve struggled, is because they don’t know how to use computers or internet. So they all rely upon other people who are a bit more savvy with that…—South Asian
… the main thing that worked for me was to have somebody who I knew who is in the medical profession, who I knew, advocated for black people, for them to say, this is something that you should do… I was fortunate because I knew those people. But if those people were, because it’s not just GPs—like any other doctor, I probably would have thought, Yeah, well, you’re gonna say that anyway, but because it’s people I knew were actively working for the benefit of black people… I knew that they would do… medical experts who can vouch for the efficacy of drugs.—African-Caribbean
3.1.2. Vaccination Communication
A lot of people were just saying, government is just doing this, forcing us. But there isn’t a clear picture in terms of what is the vaccination? Everybody knows it is for COVID, but what does it have? Does it have any animal products? Anything that will have a lasting effect on their health, people with medical conditions, health conditions, or underlying issues? There was no clarity on any of those. Just simple sort of messages that was getting vaccinated, get vaccinated, it is safe … Then people started to question because a report came out about blood clots and stuff like that. Then people say see we told you … and what happens afterwards, and people would believe what was a myth was now the reality.—South Asian
…they did a campaign, a huge campaign for vaccination. They were explaining to people and they were engaging … I would like to see how they campaigned for the vaccination and involved everyone … They didn’t do that for COVID-19 vaccination… they will talk about COVID-19 and wash your hands and these things, but that is the things that people could see … people also could read about the vaccination against COVID-19 … they spent huge money in order to persuade people to have the vaccination.—Somali
3.1.3. Language Barrier
COVID-19 was a strange period and shows the differences between communities and the impact the problem has on different communities. How can somebody who doesn’t speak the language explain what they have when everything is closed? You can’t come to the GP, the only activity is phone communication. On telephone communication, I can’t explain to you what I have, so that is the problem.—Somali
“… you might have somebody who is very educated and is dealing with a parent or a grandparent who is not familiar with the words … [or] understand any of the jargon that’s going on. They are waiting for you to interpret it … if you are young, they are not really believing you because they are wiser [and] they have more [life] experiences … even if you have explained it to them they still would not believe you … it does not mean they will agree.”—South Asian
As UK, they don’t address the specific communities … if people are new in this country and they don’t know where to get the information or something like that, then they are vulnerable and will take all the misinformation that they are getting through the internet.—Somali
3.1.4. Community-Tailored Communication
GPs are the first contact point and yet they are not even meeting the basic support service like sorting out appointment with the client and listening to the client. Even not giving enough time, they feel they don’t have enough time. Because of language barrier is my take or they don’t understand the real issue … hospital is better, secondary service is better … Because secondary service, you are more likely to get attention—Somali
African heritage community is one of those communities that often gets pushed aside and also get left behind in terms of information. So that we had to shape the information and get it out there to the community so that they didn’t feel lost and isolated, but felt that they had a way of communicating with each other … using a community radio is informing individuals about what the messages are for COVID and physically inviting the Director of Public Health onto that show … to bring this live program to try and debunk some stories out there.—African-Caribbean
3.2. Health Experience and Impact
3.2.1. General Health Experiences
I was the victim of COVID itself. I was in hospital for six, seven days, on oxygen and NHS did a good job for me, it was at the time when it was peak time. So it became quite stressful at the time, for me, for my family, for relatives and everybody … I think they were all concerned for each other.—South Asian
For family, a lot of people are so frightened of actually coming anywhere near you, which I know for many has led to increased anxiety, what they may pass on, and having to live with those consequences, the guilt equally for the families can lead to quite a lot of loneliness.—African-Caribbean
Diabetes has increased, the mental health issues have increased, now we need to make sure after COVID, how we can deal with those impacts because people always think [ing] of death and what it costs and life … a lot of frictions and the Imams were there to solve the domestic matters.—Somali
And then people fear bringing loved ones for medical attention when they need it. So what we see is a lot of delayed diagnoses of people trying to weigh up whether or not the more at risk of fatal cancers and dementia has become deteriorated an awful lot.—African-Caribbean
3.2.2. Caring Responsibilities
…before lockdown, carers had already been isolated. And because of the carer’s commitment, they were too busy caring for their loved ones they can’t get out and they are very much dependent on the information that was signposting. And once the COVID started, lots of their partners have been shielded … information they receive from the government department or from the council … I have couple friends who rang me to say they could not understand the shielding element, it wasn’t properly explained, like what the shielding was. And to make matters worse, because of the lockdown and all that we have really been isolated… And added difficulties was communication with the medical professionals … you have to wait ages … And that makes things a lot difficult.—South Asian
But in terms of my mother, she, at her age has many needs to see a doctor. And it becomes very difficult … she’s also suffering from a hearing problem. So I now become a translator… I’ve got to translate from my mother to this doctor. And then vice versa, because the doctor isn’t there to probe and to check. That becomes quite difficult—African-Caribbean
… a lot of carers before COVID, they do go on to develop either mental health or physical conditions. So this is kind of exaggerated more as into the mental health, depression, anxiety.—South Asian
3.2.3. Mental Health
… mental health (has) gone through the roof. I don’t think it’s the loneliness, but mental health and coping mechanisms, have overwhelmed both … we’ve had a youngster eight-year-old want to commit suicide… (said) I don’t mean it from the sense of “I’m going to commit suicide”, just words they are actively attempting.—African-Caribbean
… mental health has increased and going forward, through young people, elders; and that is at the moment, I think, is the priority in our community to really deal with anxiety levels, and you know, stress and losing finances.—Somali
I’ve seen a high rate of anxiety, depression, and domestic abuse as a result. So they’re the kind of key issues that have arisen because of COVID.—South Asian
I used to do Facebook quite a bit. But I had to put that away. Because I was finding that it was bringing more trauma into my life … had to leave that alone and just work with the small amount of people in my family or my extended group of people outside.—African-Caribbean
… this COVID, on the onset and still ongoing, is creating a lot of low level to medium-level mental health issues and it’s not being picked up and to get even the support out to the community … there are people who need support. There’s a huge gap.—South Asian
… if you are a carer or you have got identified mental health needs, there are support available through social services. But if a person has got stigma attached to service in the first place, they may not necessarily want to be caught contacting social services to access that support … there’s a level of education needed about social services.—South Asian
Imam also adds the mental health aspect because the Mosque [is] where the community comes together, where the problems were solved. Physically, persons would go there, talk to others. But the restrictions that people were confined in their own homes … They felt really overwhelmed … elders call the people who were vulnerable.—Somali
3.3. Health Service and Management
3.3.1. Health Service Access
… with me being pregnant. I’ve been able to still have my midwife appointments, whereas other people within our community have not had that privilege, because their GP was not allowing that sort of interaction. I think it has to do with where they’re from, as well … my friends from London … everything was done over the phone … in Leicester, they were more open to seeing their patients face to face.—Somali
… initially, there wasn’t that much engagement (with trusted sources). It is difficult to actually get an appointment to see your GP … Unless you are very ill … during the pandemic, we should be able to get access to a GP more easily, but now it became more harder—it’s the opposite.—South Asian
… if I have an issue now, I’d have to call and then I’d have to describe … a photograph of it and send it off to them … I lose that personal connection. I want him to see it instead of sending off a photograph … that’s a massive change, a massive difference … It also prevented me from calling; whenever there is a problem, I put it off … instead of the usual thing is to go see my doctor, I can’t do that. And those problem becomes major issues.—African-Caribbean
… it’s very difficult to get appointments with the GPs, and possible you can get is telephone consultation… create a kind of frustration. And we eventually become very reluctant to bond with the medical professionals because of frustration.—South Asian
… NHS and GP, not really communicate well with the community. It’s very hard. People complain a lot about GP access, and making appointments. The reason being the way GP works may be tainted or you don’t have a family doctor or someone who knows well always you see a different person.—Somali
So any long-term illness people had or from previously, the doctor surgeries were closed … people have not even had a chance to talk to the doctor to get back to their original problems … (they were told) all you know, just continue to take your own medicine …. they were not able to go to the hospital because of the restrictions.—South Asian
… the treatment that some people got, especially the BAME community, was not up-to-date or was not the same as the other communities like the White community … many people who went into the hospitals passed away, and people are asking why … their mothers and fathers were at the hospitals… (they) couldn’t eat properly, nobody looked after them properly …—Somali
… to be fair, to the government and NHS, the NHS had done a good job … not talking about just the doctors and nurses, but all the others, staff admin, to the cleaners, to the people who deliver food to the table …. All this staff also had underlying issues, diabetes, blood pressure … still had to continue working.—South Asian
3.3.2. Community Actions
… when lockdown had started, we had very little information from the local authority … communications were very poor in terms of what the issues were and how to deal with COVID as individuals, as families and as the community centre … information was not in the correct language … targeting those communities that could not speak English.”—South Asian
… taking proactive steps to set up WhatsApp groups … sharing information nationally or locally, whatever comes through, whether it’s coming from NHS or government, or other scaremongering … we provided counter-narrative stories, genuine stories by getting the right information from the government, website and NHS.—Somali
… Zoom class … a Somali exercise group during the lockdown. There is a health visitor, a dietitian… would come in those weekly meetings, and (ask) what have you guys done during the lockdown, what kind of exercise, and they were sharing stories … and then there will be that healthy conversation.”—Somali
… Somali doctor that lives in Leicester … speaking to our community and she had to make a video … (with) Somali subtitle as well, because people can actually read it … about trying to explain the vaccine, saying that I have taken it, you guys can make up your own mind, but it is safe, it’s for our health.—Somali
We use our own initiative to develop videos in different languages. We produce leaflets, we did leaflet drops … to engage with the community … it’s been kind of drip feed to the local authority, NHS organisation public health, which we have tapped into, but we simplify things to ensure that the message is more appropriate for that particular community … help others, make them understand the severity of COVID impact on them.—South Asian
… very real thing hearing it from somebody who you presumed to be human rather than somebody who is a professor … assisted a lot of us in coming to grips with some of the myths … they needed somebody to say that.—African-Caribbean
3.4. Community Recommendations to Improve Primary Care Communication
4. Discussion
4.1. Strength and Limitation
4.2. Implications for Research and Practice
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Theme | Sub-Theme |
---|---|
Health communication | Communication source and preference Vaccination communication Language barrier Community-tailored communication |
Health experience, impact and management | General health experiences Caring responsibilities Mental health |
Health services and management | Health services Community actions |
Community recommendations to improve primary care communication | Learning from the pandemic Communication improvement Community leadership Cultural appropriate interventions Trust and government actions |
Theme | Recommendation | Supporting Quote |
---|---|---|
Learning from the pandemic | Reflect on the entire pandemic experience step-by-step and identify the issues and what actions were used to tackle them for future preparedness | … the lessons are only going to be learned if we can sit back, go through the whole process from start to the end … (identify), what were the issues coming from the committee itself. And how they have tackled issues step by step …—South Asian |
Need for more support structures, especially mental health support for children | … mental health and wellbeing and it’s not just for adults, but also for young people or for children. There’s lot more where that needs to be done… from local government, or even from the government itself, providing support for people who suffer from ill mental health, mental wellbeing.—African-Caribbean | |
More decision-making power from the national government should be provided to local authorities for easier and more effective management of community-related issues | … (national) government is in charge of everything … afterwards giving a little authority to local councils, to take part in making decisions as well. Really speaking, it should be them (local councils) who should be taking control first and forward that information to the government … people have trust in them (local councils) more because they are dealing with local government in everyday life.—South Asian | |
Provide intervention and support for vulnerable individuals and carers based on the experiences from the failure to do so at the early stages of the pandemic | … not just in UK, but internationally. Early intervention and supporting individuals who were vulnerable, would be more crucial, especially when you look at some of the examples that residential homes where people were discharged from hospitals without testing going back into hospital… (carers) unpaid key workers, support them appropriately whether its health or social care.—South Asian | |
Communication improvement | Identify trusted sources from within the community to serve as representatives of health services and to share necessary information | So to have a communication, trusted communication … where people of Caribbean, Black any heritage, but focus on that…communication of information, which seems a bit tricky … But the certain phrases, which seem to put people’s back up, we’ve got to be mindful, and perhaps having people engaging in the language would be, make people engage a bit better.—African-Caribbean |
Take advantage of the shift to do more digital communication and use those technologies to make information accessible to everyone | …. I don’t need to be out on the road every day and I can be in contact with people all over the world. Because technology has shown me I can access conversations, discussions, information with pioneers in their field… I want that to be accessible for everybody. Not just for those who can afford it.—African-Caribbean | |
Need for clearer, more accurate and consistent health messaging and limit mixed messages | … if they give us clear messages rather than confusing … (and) share with the community one that is helpful … (authority) do their homework correctly. Then just give the right message and one message and stick to that. If you change it, give the reason for doing it rather than “shall we do this or not”.—South Asian | |
Need for simplified and accessible information tailored to different demographic groups to minimize high reliance on others | they want somebody who’s going to give them accurate information, its about how they put it across, and the medium that they use and put it across … it’s been primarily people in the mid to late 40s upwards … people in their 50s, they’re still all on Facebook, and other types of social media, and they’re still in the chat groups, and things get bounced around in that way.—African-Caribbean | |
Community leadership | Be aware and acknowledge intersections within the community towards influencing their decision-making and action | … acknowledge the intersections of communities, because a lot of this ends up treating things like, Oh, so you’re African-Caribbean. But, like, I’m also part of many other communities … if you’re not supporting people through it all, not listening to them, not showing that you actually care about them as human beings, we’re not going to leave this pandemic.—African-Caribbean |
Use more community structures to deliver health communication and information | … more community based, leading … the area I grew up in, they closed our library, and everyone complained that there were kids on the street … Seeing communities as communities again.—African-Caribbean | |
Proper selection of ethnic minority representatives who are truly respected and acknowledged amongst their communities | … not just to pick up somebody from the community itself to put on the decision-making process, you have to look into their background, and also whether it is acceptable to the committee or not … that person’s views are about equality and diversity, whether that person understands it.—South Asian | |
Use trusted community members and sources to actively promote and advocate for improvement in vaccine uptake | … having someone trusted within the community, not necessarily just having it … but speaking about it, acknowledging that there are concerns… and weighing up (what) seems to have a better impact.—Somali | |
Cultural appropriate interventions | Improve investment funding and establish policies for community health and wellbeing initiatives in different settings | The government should invest more in health … in how people live a healthier lifestyle, if necessary, then some things should be imposed. I work in a school, I don’t think the kids are as healthy as they should … one of the reasons that we’ve been hit badly with COVID is that we have a big number of people who are unhealthy … So they have to do something about that.—African-Caribbean |
More government investment in health services to build more hospitals rather than close down hospital wards | … financial assistance should be the first priority resource … that goes with the health services and build more hospitals … rather than just finding more, closing some wards and suddenly they had to open all this …—South Asian | |
Invest in infrastructure for younger generations that reflect their culture | … we used to have Grandby Halls and we used to meet friends … We’re still friends today … My daughter won’t have that. There is nowhere for them to go … Our children and grandchildren won’t have that opportunity unless we make it for them like that; the African-Caribbean centre is not run by African-Caribbeans, it is owned by the Council … they’ve got a few Asian faces, they think that’s enough representation, but they don’t represent us.—African-Caribbean | |
Care for elderly people should appropriately take into consideration their cultural values and preference | Our lovely elderly relatives to have care homes which acknowledge doing your hair is different … Sometimes the diets are different … have Christian ones … Muslim care homes … Mason’s, it’d be really wonderful to have one or two, which acknowledged that and actually catered …—African-Caribbean | |
Local authorities should empower and support community organisations that engage and support general ethnic minority communities | … local authority to give support to organisations like us (community organisation) … even to the nation, we helped … service that complements whatever they’re doing … many people will have been hospitalised … we prevented all this by providing this information and the right support … (important) the grassroot organisations have the support and the trust of the people—Somali | |
Trust and government actions | Provide timely and clear ethnic minority information, for instance, explanations of why more ethnic minorities were affected | I would like to see why so many ethnic minority groups have died during COVID-19 … government becomes organised … it’s important that people get that trust, that people are honest … I see people who were victims of COVID-19, I see people who died from COVID-19 and the people lost so many loved ones, so I would like to know why.—Somali |
Authorities need to listen to the people’s opinions | … if the government listened to the people, to us, our struggles, and how we’re dealing with it, then we’re gonna get through it.—Somali | |
Government and health services need to be honest and transparent, present accurate information to encourage public cooperation | So if the government show us the right figures, what they are doing at each stage, and not just suddenly change the rules without telling us why recently … we will be patient with them if they’re honest … They can’t expect us to do something that they’re not doing. So if they show us better examples, we will respect them more, we will listen …—South Asian | |
Authorities should not mix politics and health issues but need to prioritise the health of people and focus on facts to improve public trust | … government need to separate politics from the health of the people. You cannot play with the politics in health. Health has to be the priority … People are not robots … trust building will take time and has to be nurtured … politicians have to be also accountable to the rules …—Somali | |
Government authorities should avoid exaggerating health communication and reassure people with clear supporting information | … (government) exaggerated a lot of things … they should have reassured people, yes, they did at the end. That’s not the point. You should reassure people … Rather than scaring people … people felt like they were left to their own measures … because you’ve not made it clear.—Somali |
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Ekezie, W.; Maxwell, A.; Byron, M.; Czyznikowska, B.; Osman, I.; Moylan, K.; Gong, S.; Pareek, M. Health Communication and Inequalities in Primary Care Access during the COVID-19 Pandemic among Ethnic Minorities in the United Kingdom: Lived Experiences and Recommendations. Int. J. Environ. Res. Public Health 2022, 19, 15166. https://doi.org/10.3390/ijerph192215166
Ekezie W, Maxwell A, Byron M, Czyznikowska B, Osman I, Moylan K, Gong S, Pareek M. Health Communication and Inequalities in Primary Care Access during the COVID-19 Pandemic among Ethnic Minorities in the United Kingdom: Lived Experiences and Recommendations. International Journal of Environmental Research and Public Health. 2022; 19(22):15166. https://doi.org/10.3390/ijerph192215166
Chicago/Turabian StyleEkezie, Winifred, Akilah Maxwell, Margaret Byron, Barbara Czyznikowska, Idil Osman, Katie Moylan, Sarah Gong, and Manish Pareek. 2022. "Health Communication and Inequalities in Primary Care Access during the COVID-19 Pandemic among Ethnic Minorities in the United Kingdom: Lived Experiences and Recommendations" International Journal of Environmental Research and Public Health 19, no. 22: 15166. https://doi.org/10.3390/ijerph192215166
APA StyleEkezie, W., Maxwell, A., Byron, M., Czyznikowska, B., Osman, I., Moylan, K., Gong, S., & Pareek, M. (2022). Health Communication and Inequalities in Primary Care Access during the COVID-19 Pandemic among Ethnic Minorities in the United Kingdom: Lived Experiences and Recommendations. International Journal of Environmental Research and Public Health, 19(22), 15166. https://doi.org/10.3390/ijerph192215166