3.1 Participants
Interviews were conducted with 33 providers and 9 CMs. The CMs were all women, and 3 of these women self-identified as Roma. Providers from a range of job roles were recruited from different organisations on the basis that they were involved in vaccination delivery to Romanian and Roma Romanian communities, or in an outbreak response. Participant demographic characteristics are reported in tables 3 and 4.
Table 3: Providers
Organisation/job role
|
Number of interviews
|
Liverpool
|
Leeds
|
Birmingham
|
Public Health England – Health protection team
|
1
|
1
|
5
|
Screening and immunisation team member
|
1
|
2
|
1
|
Practice nurse
|
-
|
4
|
1
|
GP
|
-
|
1
|
|
GP practice manager
|
-
|
3
|
2
|
Council
|
1
|
-
|
4
|
School nurse
|
1
|
-
|
-
|
Community immunisation nursing team member
|
2
|
-
|
-
|
Social exclusion team member
|
2
|
-
|
-
|
Health visitor
|
-
|
-
|
1
|
Total = 33
|
8
|
11
|
14
|
Table 4: Community members
No.
|
Length of time living in the UK
|
Self-reported ethnicity and nationality
|
Children
|
Reported vaccination status of children
|
Where vaccinated
|
1
|
3 months
|
Romanian
|
4 children, age range 2-14 years.
|
Children fully vaccinated.
|
Romania and the UK
|
2
|
3 years
|
Romanian
|
5 children, age range 1.5-14 years
|
Children only vaccinated with BCG.
|
Romania and the UK
|
3
|
1 year
|
Romanian
|
No children
|
N/A
|
No recent vaccinations (all vaccinations in childhood). All vaccinations received in Romania.
|
4
|
1 year
|
Romanian
|
5 children, age range 5-16 years
|
Children fully vaccinated
|
Romania and the UK
|
5
|
3 years
|
Romanian – mother was Romanian and father was Roma Romanian
|
2 children, aged 7 months and 5 years
|
Children fully vaccinated
|
Romania and the UK
|
6
|
2 years
|
Roma Romanian
|
4 children, age range 1.5-13 years
|
Children fully vaccinated
|
Romania and the UK
|
7
|
3 years
|
Romanian
|
3 children, age range 6 months-3 years
|
Children fully vaccinated
|
Romania and the UK
|
8
|
2 years
|
Romanian
|
3 children, age range 3 to 9. Participant also pregnant at the time of interview.
|
Youngest child has not been vaccinated.
Mother has also never had any vaccinations.
|
Romania and planned vaccinations for her youngest child in the UK
|
9
|
5 years
|
Roma Romanian
|
2 children, aged 19 and 21. One grandson aged 4 years.
|
2 vaccinations declined for grandson – flu and another vaccination.
|
Vaccinations for her children all received in Romania. Vaccinations for her grandson given in the UK.
|
Ten main factors were reported to influence vaccination uptake: primary care accessibility and acceptability, language and literacy, perceptions around vaccination costs, competing priorities to vaccination, awareness of vaccines and access to vaccine information, perceptions around measles severity and the benefits of vaccination, trust in the healthcare system and vaccines, and prompts to vaccinate. These factors are explored under the categories used in the “5A’s Taxonomy for Determinants of Vaccine Uptake” [26].
3.2 Access
3.2.1 Primary care accessibility and acceptability
Providers considered access to primary healthcare to be a major barrier to vaccine uptake. In all 3 cities, providers reported that registration with general practice and lower primary care use were an issue amongst the communities. Lower usage of primary care by the communities was partly perceived as due to differences in health-seeking behaviours. Providers, particularly in Birmingham, noted that community members were more likely to access A&E than primary care, and only then once they felt very unwell.
‘in their country they’re not going to go to see the doctor, unless they’re very ill and they’re going to go straight to the hospital. You don’t go through the GP.’ (Provider 23)
Several providers felt that the concept of primary care and preventing illness was often not adopted by community members, with one provider reporting: ‘they just don’t believe in any medical intervention as such…. it’s very low on their horizon and priority.’ Other providers considered that uncertainties around entitlement to care prevented people from accessing health services until they became very unwell and realised that they could not self-manage their health.
In their engagement with the communities, providers found that navigating the health system was challenging and unclear for community members, particularly in the presence of language barriers. The process of registering with a general practice was not always clear. For instance, providers found that some community members were unaware of a need to register their new-born child at their GP practice, considering that this would be an automatic process if the mother was already registered there.
Experiences of discrimination were also not uncommon, specifically providers highlighted this in relation to encounters with GP receptionists.
‘..to get to the GP you have to get past the front desk and it’s the front desks that we are finding are really resistant to registering patients, following up, etc……So first of all you’ve got to get passed the front desk, and if you don’t speak English that’s damn near impossible, and some of the receptionists are like out and out rude to the new arrivals, some of them are extremely hostile to registering patients, particularly if they are from Eastern Europe.’ (Provider 8)
Amongst the CMs we spoke with, registration with a general practice had been reported as relatively easy; however, this appeared to be because the CMs had been helped in the process by friends and family. Amongst the CMs, their experiences of accessing general practice were largely positive, although they were aware of friends and family members that had experienced inadequate care.
‘my mum lives here in the UK…. but her general practitioner throws her out [of] the door every time she has problems because she can’t speak English, they’ve got her out during the appointment. They’ve done this three times already. They push her out. And she’s feeling really sick…. she’s afraid.’ (Community member 6)
3.2.2 Language and literacy
CMs reported language and literacy as major barriers to accessing credible vaccine information and giving informed consent for vaccination. Providers also reported their awareness of these issues, and highlighted communication as a factor affecting their ability to properly explain vaccinations and to promote vaccination. The time-allotted to appointments with midwives and those working in general practice, reported as just 15 minutes, was considered unrealistic, particularly when trying to overcome communication barriers.
Providers often struggled to distinguish the difference between Roma and Romanian, particularly when it came to language. Many Roma speak Romani as a first language, and the language of their nationality may be their second language. Romani has many different dialects and providers highlighted that access to a professional Romani speaking interpreter was not possible. Even when providers were aware that Romanian was not the preferred language for community members, or one they were proficient in, they remained reliant on accessing Romanian interpreters due to a lack of professional Romani interpreters. The use of Romanian interpreters could also be problematic, given the history between these groups
‘…. some Roma communities feel very, apparently, badly treated by Romanians and therefore having a Romanian translator might not actually support understanding and translation. Well, [it] might introduce more problems and not solve the problem we’re trying to solve.’ (Provider 11)
Most of the CMs that we spoke with were able to access a Romanian speaking telephone interpreter at their GP practice. However, in their experience, providers were concerned that using telephone interpreters was not always effective.
‘In your appointment, it’s very hard to explain, with the language, what each illness is, and you sometimes wonder what the Language Line is actually saying, because you’re trusting their interpretation. Sometimes the patient looks totally confused with the Language Line. So, it’s a very hard job.’ (Provider 14)
One CM also highlighted that those requiring an interpreter may not be aware that GPs are obligated to provide interpreting services. Instead they may seek their own interpreters, who may be potentially exploitative.
‘there are a lot of dodgy people maybe on the internet who offer services, who offer to help you…and they charge a lot.’ (Community member 1)
CMs particularly reported a lack of interpreters available to explain school-based vaccinations, and in one instance an online translation tool was being using by health visitors. One CM had experienced difficulties in understanding and completing the informed consent form for her child’s flu vaccination at school. Not being able to complete the form had meant that the child missed her flu vaccination at that time.
CMs also highlighted that literacy barriers may be an issue amongst the communities, and that written information (while useful) would not be accessible to everyone.
‘it would be really helpful to have both - leaflets and some advice in person. With the leaflets is really hard because a lot of Romanians don’t go to school and can’t really read. So it’s probably better or more helpful if they, somebody could explain to them in person, face to face.’ (Community member 4)
In order to try and manage communication barriers, some CMs discussed having translation apps on their phones, or attending appointments with their family members.
‘she will try to go [to the school] with her daughter, 11 years-old, because she’s good at English, and maybe the daughter can help mum to understand everything about this immunization.’ (Community member 6)
One CM also talked about receiving direct help from linking services at her local council to organise appointments.
3.3 Affordability
3.3.1 Perceived financial costs
From their contact with community members, several providers reported a lack of clarity around payment for health services that could pose as a barrier to accessing healthcare and vaccination.
‘…. if you are new into the country there are language issues, you don’t know how to navigate the health system, how do you understand if you’re one of those migrants that will be charged or won’t be charged….’ (Provider 1)
3.3.2 Competing priorities
In the context of other competing demands, vaccination was often not one of the main priorities for community members. The communities were described as having a more reactive response, living day-by-day, and dealing with immediate stressors. Competing priorities related to financial instabilities.
‘in the great scheme of things, vaccination tends to be a little bit lower down the list when you’re struggle even to wonder what you’re going to feed [your children], or how you’re going to live for the rest of the day’ (Provider 8)
Given this context, booking vaccination appointments in advance was not considered to be particularly effective, indicating the benefits of using a different approach such as drop-in vaccination sessions.
‘The biggest problem we think exist is if you send them pre-booked appointments, so if you get them to book an appointment that just does not work; they don’t live like that….if you book them appointments, even if they’ve booked them themselves, it doesn’t work, the DNA rates are very high. [They are more likely to come] if you tell them come this morning…..we’ve got a clinic coming like this morning, you can walk in. They understand that.’ (Provider 12)
3.4 Awareness
Given the language and literacy barriers experienced by CMs, being able to locate credible information about vaccines in translated forms was difficult. The majority of CMs that we spoke with were not provided with written vaccination in translated forms. Several sought their information from family and friends, in addition to healthcare professionals. One CM also discussed the use of social media, accessing online chats and searching for information on YouTube.
Amongst the CMs that we spoke with, there was an awareness around the vaccine schedule in the UK; however, providers reported awareness as an issue within the communities.
‘I think there was misunderstandings or wrong levels of awareness. I think people were saying to the school imms service when they were trying to offer MMR vaccinations or when the health protection team were asking parents about when their kids had their MMR, they were being told yes, they had the injection when they were born, and they are all okay. We are not quite sure what that was. I think we were all doubtful that it was MMR. It may just have been something else.’ (Provider 11)
One provider in Birmingham had also heard the belief from community members that ‘one shot cures all diseases’, highlighting what appeared to be a lack of awareness around the vaccine schedule and the need for different vaccines for protection.
3.5 Acceptance
3.5.1 Perceptions around measles severity
Providers, particularly in Birmingham, reported that measles was not necessarily a disease that caused concern amongst the communities. Several providers believed that for some community members their children contracting measles was a ‘rite of passage’
‘the thought was that it wasn’t particularly a disease that they [the Romanian communities] worried about, so I don't know whether it was the attitude to the vaccine or the attitude to the disease…..I know that they appeared not to be worried enough to have the vaccine.’ (Provider 25)
It was considered beneficial to contract measles rather than vaccinate, so as to develop a ‘natural immunity’ to the disease.
‘In one family we had about eight members catch the virus, and they’ll say, “Well, it’s better to catch the natural infection than the injection.” Well, that isn’t always true, because you get a lot of symptoms, and we saw people in ITU and these were like young women, fit and healthy, and one ended up in ITU. She was really very ill, and could have died. We’ve had a couple of kids as well…. I think they just think, “Measles, it’s a bit of a rash and that’s it,” (Provider 15)
3.5.2 Perceptions around the benefits of vaccination
Amongst the interviewed CMs, most considered vaccinations beneficial and important, particularly those that had witnessed vaccine-preventable diseases. CMs were often nervous ahead of their child’s first vaccination, but this passed with positive vaccination experiences. A minority of CMs had not fully vaccinated their children as they believed that vaccines could cause more harm than good, producing damaging side effects.
‘I’m worried about illness and catching cold. Other children got sick afterwards, with swollen throats and then cancer and many other problems. Like lung diseases’ (Community member 2)
‘some children had one-week high temperature, some children because it was something with the nose, chocked and they couldn’t breathe.’ (Community member 9)
Amongst the CMs that declined vaccination, there was also the belief that vaccinations are ineffective. This was discussed particularly in relation to the influenza and MMR vaccine.
‘other people had the vaccine against this disease, measles as you call it, they had the vaccine and still got the disease. This makes me doubtful…..‘I asked a nurse when I was in Romania. I asked her why do you have them vaccinations against measles if they don’t protect children and they still get the measles? And she said it happens for them to still get.’ (Community member 2)
Another belief was that vaccinations were unnecessary, as their children were well without.
‘I didn’t get the vaccines for my children neither in Romania nor here. None. I think it’s the best way. They are much better this way. They don’t catch cold, they don’t get ill.’ (Community member 2)
Other beliefs that providers had noted within the communities by providers, which were not raised during interviews with community members, were that vaccines could causes impotence, that vaccines are part of a conspiracy theory by religious leaders, and that vaccines contain human tissue.
3.5.3 Trust in vaccinations and health services
Past experiences of vaccinations and health care, in Romania and the UK, affected the decision to access vaccinations and health services amongst some of the community members. Understandably, negative experiences could create a distrust and fear of vaccines and health services. This highlights the importance of understanding the context of people’s lives and how this shapes health decision-making.
‘I was afraid to have the vaccination for the boy. I was afraid because in Romania a lot has happened, I got scared and I refused…. why did I refuse? Because someone in our village in Romania died because of the vaccination. The vaccine wasn’t done properly. I was afraid when the boy was born to have the vaccine on him. I refused the vaccination….. the doctor no longer works there, he was put to trial. After the trial he was released from the hospital, they replaced him’ (Community member 8)
Although it was unclear what exactly had happened to this child, the reporting of his death shortly after vaccination had generated a fear in the community. In this instance, the CM had become distrustful of doctors and subsequently concerned about vaccinations. This CM had also experienced other negative experiences of healthcare in Romania, in relation to herself and family members, which had formed her opinion that healthcare professionals are money-driven and cannot be trusted.
‘In Romania, if you don’t have money they leave you to die at home.’ (Community member 8)
In the UK, this CM had gone on to experience positive experiences of healthcare, which in turn had changed her attitude towards vaccinations.
‘after [I] saw how the NHS is here in England, [I] changed my mind…. that’s why I wanted the vaccination for my son, because the doctors are different here…….[I] built up a relationship n and confidence with professionals from NHS because [I was] in the hospital with the little one for a while one, when the little one was just 11 months old, and they saved his life’ (Community member 8)
It was highlighted by providers that through discussion with community members trust could be developed and that this promoted vaccination uptake.
‘…once I think I get a bit of a conversation going with the Roma mums, they do let me in and they will let me immunise. They’re not against immunisations, they will let you immunise. That’s the big difference I find, but it’s that level of trust that you need to get with the Roma’ (Provider 20)
3.6 Activation
Providers found that their blanket approach for reaching service users, such as GPs sending vaccination reminders to CMs via letter or text message, was not a particularly effective way of reaching the communities, particularly the Roma. This was due to communication barriers, and the transiency within Roma communities.
‘…. this community really don't stay [anywhere] very long, so to even have an address is probably quite difficult…. they seem to move on, and it’s not the same people in houses from one week to the next.’ (Provider 25)
Face-to-face communication was considered a much more effective approach to reaching communities and gaining their trust, using outreach strategies. In order to promote vaccination, although costly, providers also considered that it would be beneficial to involve members of the community as vaccine advocates. It was also felt that there needed to be a more integrated approach, involving different local organisations (e.g. schools, social care providers, local authorities, health visiting and midwifery services, and general practice) in identifying, understanding and building trust with communities.