Gypsy, Roma and Traveller (GRT) communities are among the most disadvantaged minority groups in Europe, experiencing poorer infant and child health outcomes (Smart et al, 2003) and greater maternal and child mortality than the general population (Aspinall, 2005; Parry et al, 2007; Aspinall, 2014). They are also less likely to access health services; facing barriers related to discrimination, culture and language, health literacy, service-user attributes, and economic barriers (Siebelt et al, 2017; McFadden et al, 2018). In the UK, GRT communities have been identified as having a lower uptake of childhood immunisations than in the general population, significantly increasing the risk of vaccine-preventable disease among children and families (Pinkney, 2012; Dar et al, 2013; Dixon et al, 2017).
Recent studies exploring GRT mothers' perspectives on immunisation have found that the majority of GRT participants were positive about immunisation (Jackson et al, 2017). However, incidence of measles outbreaks remains much higher in GRT communities than in the general population (Maduma-Butshe and McCarthy, 2013). Condon and Salmon (2015) found that shared Gypsy life, including defined gender roles, having large families and living within a close community, influenced maternal decision-making about child health. Smith and Newton (2017) concluded from their qualitative research with GRT communities in Kent that it was poor health service provision, not cultural adherence, that resulted in low immunisation uptake.
In 2018, the joint Public Health England (PHE) and NHS England and Improvement London Screening and Immunisation Team started working on a strategy to reduce inequities in vaccination uptake in London. GRT communities are a known underserved group in London (Feder et al, 1993) and this study was part of a series of small-scale qualitative research projects to inform the team's plans to improve access to vaccination services through local partnership work. This article explores the interaction between GRT mothers of children aged 0–10 years old, health professionals and their communities and how this impacts upon their decision-making around childhood immunisations in the London Borough of Kingston.
Methods
The authors employed a qualitative methodological approach because this was an initial exploratory study with the aim of discovering new insights or themes about childhood immunisations in a London-based GRT community that could be explored further in a larger piece of work. The authors were also keen to uncover context-specific knowledge about the experiences of GRT mothers of 0–10-year-old children that could be used to improve local partnership work with local authorities around improving access to vaccination services in that area.
The number of GRT people in the UK and in London is unknown. There is also variation in the definition of the term GRT. For the purposes of this study, the GRT community was defined as English Gypsy, Roma Gypsy, Romany Gypsy, Irish Traveller, New Age Traveller, Circus, Bargees or Show People. Although ethnically different, they share a traditionally nomadic lifestyle.
Between 1 March and 30 April 2018, the authors conducted semi-structured interviews with mothers from the GRT community in the Royal Borough of Kingston. Kingston is in south-west London where there is a sizeable GRT community and there are local plans to improve access to health, education and social care (Waters, 2016).
Participants could be settled or nomadic, but they had to identify with one of the above groups and have delivered a baby at hospitals within Kingston or neighbouring local authority areas in the past 10 years. Grandmothers with children who had delivered a baby at these hospitals in the past 10 years were also included, as they were considered to have an influence on mothers' decision-making.
Using a snowballing sampling approach in Kingston's GRT community, a total of nine women were contacted and seven agreed to participate. The interviews were conducted by three female researchers—one from Maternity Voices (an independent advisory body), one public health registrar doing a placement with the joint PHE and NHS England and Improvement Screening and Immunisation Team (NE), and one from the local authority public health department (EW-T). Two of the researchers were not known to the participants. The other did outreach work with the community, which is how the contacts were established. The interviews and focus group were conducted in the participants' homes on council and privately owned sites.
An interview topic guide was used to structure the discussion, which allowed for flexibility and elaboration around each participant's experience. This took a chronological approach, covering care and decision-making in pregnancy, childbirth and postnatally. The guide was developed from a review of the literature on GRT views of child health and health services.
All interviews were conducted face to face and in English. Interviews were audio-recorded, transcribed by a third party and anonymised. Field notes were also made during the interview. An inductive process was used to analyse the data by organising it into categories on the basis of themes. These were then linked together to form theoretical statements. Thematic coding was undertaken by two researchers independently of one another, and then the coding was shared and themes agreed with a fourth researcher, not involved in the interviews. Open, axial and selective coding was used. Concepts were developed and organised into five core themes. Informed consent was obtained from each participant and pseudonyms were assigned to participants to protect identities. Ethical approval was not required from the NHS as this was service improvement work.
Findings
Seven women, aged 15–54 years, participated. Two identified as Irish Travellers, three as English Gypsy and two as ‘other travellers’. Four women opted to be interviewed together (group interviewees). Three were interviewed separately (individual interviewees). Five main themes emerged:
‘Never missed an appointment’
Interviewees reported that they were compliant with their maternal pathway. Six contacted their GP as soon as they found out they were pregnant (the other was unaware she was pregnant until she was 20 weeks). All attended scheduled appointments. They were content with the care they received and the information that they were given. However, there was limited knowledge of the screening programmes offered—they were unaware of the fetal anomaly scan being a screening programme—and of the risks associated with screening. They assumed they were routine antenatal appointments.
There was mixed awareness of maternal vaccinations. Not all had been offered vaccinations and there was hesitancy among those who were offered them. As one interviewee said:
‘If I wasn't pregnant I would have had it, but I don't know, I didn't like the thought of it when I was having the baby, no.’
As with screening, participants accepted what was offered without questioning. One interviewee recalled being given a vaccination straight after birth:
‘I can't remember what it was for, I did know, but I can't remember. I think it was just a jab, you know one of them you have to have every so many years. I was due it and that's what they gave me. I can't remember what they're called.’
Postnatally, participants were equally compliant about attending health visitor appointments and weighing clinics for babies, describing the importance of this, especially with their first babies, but admitting that as their baby got older and with subsequent babies that they attended less often.
‘I think when you have them, you just know what you're doing, don't you?’
All interviewees spoke of having a good understanding of their bodies and of their children. To them this was more important than the knowledge, training and experience of qualified health professionals, unless the health professional had had a baby herself. They believed the knowledge gained from having had several children, and from being surrounded by young children and babies in the GRT community, had given them expertise and knowledge that is equivalent or superior to professional training:
‘The midwife was very surprised by me because I knew more than her, I literally knew more than her, because travellers are brought up with kids so even though I was 16, I knew everything about children. I knew about temperatures, I knew about rashes.’
The extent to which health professionals respected this knowledge, understanding and connection to their bodies in pregnancy, strongly influenced the mothers’ experiences and perceptions of the quality of care they received. Women who described negative experiences attributed this to health professionals not listening to them.
‘Everyone is just sharing care with the baby’
Female family members play a key role as birthing partners, providing knowledge and advice as well as caring for the baby once born. It was evident that there was a dependence on beliefs passed down and advice from older generations. Experiences of other family and community members influenced decisions. As one participant said:
‘That's the experience she's had: I would never, never let her come back to this hospital and have another child. I've had four children and where I live, there's always a woman there pregnant, always.’
Fathers were not included in the decision-making regarding children's health and the women showed a strong sense of independence from their partners regarding childbirth and child-rearing. From the start, there was a strong preference to have fathers absent at the birth as childbirth was ‘a very personal private female thing’. One woman spoke about her friend whose husband was sent in to her hospital room:
‘He had to go in and wash her and dress her and, to her, that was so embarrassing and degrading, do you understand what I mean? And she wouldn't have another baby in there and she had three after that.’
Women reported that they would rather have the involvement of female family members in their child rearing than their partners.
‘We got all of those straightway’
Participants spoke of the importance of keeping their children healthy, which they associated with having a clean home, good diet and letting the children outside to play even in the snow. There was a strong emphasis on hygiene and killing bacteria:
‘I smell bacteria bad. It's got to go out, so when you go, I'll open those two doors and I'll open everything up to air it out. I like to air my home.’
Childhood immunisations were a means to keep their children healthy and participants ensured that their children had all the infant vaccinations. As interviewee 1 said:
‘The way I look at it, if you don't have it, if they did get something, it's your fault not getting this to save this baby. That's the way I look at it, one way or the other. It's like measles, everything can be dangerous, can't it?’
Views on vaccinations were connected to a strong sense of protecting their children from disease, whether it was through good hygiene or restricting their socialising.
‘Any kind of infection at all, anything that goes around, my son catches it, so I'm glad, since he has been out of school, he hasn't been sick, not once, not once has he been sick. So, that's one bonus, to be honest with you, so I don't have to deal with children being not well.’
No one raised any questions about vaccine risks or side effects. One interviewee revealed that her child had had a high temperature after vaccinations and she dismissed the doctor's advice to take Calpol and took the child to the hospital as she ‘knew it was the needles’. Another alluded to the fact that adult vaccinations were good for people whose immune system cannot fight off infections. She mentioned her husband having a weak immune system:
‘So the flu can kill him so he gets the flu jab because the flu can kill him.’
‘They always say wait on the MMR until they start talking’
A dominant theme was families advising to delay the first dose of the measles, mumps and rubella (MMR) vaccine. This vaccine is due to be received at 12 months but, as one focus group interviewee, stated:
‘My mum always said, “leave them until they're talking”.’
To which another group interviewee added:
‘Yes, wait until a little bit later when they're on their feet a bit more, but they have the first lot.’
There was a strong sense of being always told to delay MMR, so they complied.
Only one mother spoke of the delay being linked to the autism scare. She had one child with autism and was hesitant about vaccinating her other child at 12 months in case ‘there is a slight 1% chance’ (of the child developing autism). She received her own MMR aged 12 years. A child in her community had died from measles and her mother got the whole family vaccinated. She said:
‘I was 12, so I was, like, he can have it at any point in life, so let's get over the curve that I went through with development. When he's three or four and he's up doing everything he's meant to be and I can literally sit there and say, “okay, he's not autistic”, let's go for it then.’
Discussion
Little is known about the reasons for the lower coverage of childhood immunisations in GRT communities. There is a small growing body of knowledge on this marginalised group in the UK, mostly undertaken by Jackson et al (2015) and their related publications. Like Jackson et al (2017), the authors of the present study found that GRT mothers are registered with a GP practice, access health services and there was a broad acceptance of vaccines. The centrality of the family to the care of the baby is also reflected in the work of Condon and Salmon (2015), although in our study the role of the father in vaccination decision-making was absent.
The authors acknowledge that not all GRT parents will be registered with a GP practice and since our interviewees resided on council or private sites they are more likely to engage with public services. Nevertheless, this study provides some insights. The participants vocalised a strong sense of their own expertise in birthing and looking after children. This knowledge was, at times, at odds with the advice from health professionals. The women were confident to challenge and move away from professionals' advice, including on vaccinations. The authors also found that there was a passive acceptance among the women that they did what was done in their community, which was predisposed by the views of their mothers and grandmothers. The women focused on and favoured the involvement of female family members in the journey to motherhood, rather than that of their partners. The authors had not found these observations in other research on the GRT community and believe that these female-centred perspectives need to be acknowledged when doing face-to-face discussions or planning community engagement about vaccinations.
This was a qualitative study and, as such, was not designed to be representative of the wider GRT community, nor was it generalisable. However, there are some implications for health professionals working with GRT women in relation to immunisations. Vaccinators, health visitors and midwives should acknowledge the delay of MMR and discuss the risks of delaying vaccinations at every opportunity. Measles outbreaks are common among GRT communities (Maduma-Butshe and McCarthy, 2013). This should also be supported by a patient invite-reminder system that calls/recalls the child several times until the child receives the two doses of MMR. Offering MMR in schools is another way of preventing a child being forgotten and going unvaccinated. These actions may be difficult to implement in relation to highly mobile GRT families. However, health visitors and other local authority staff who work with the communities could be trained in the key message of acknowledging the delay in MMR and working with them to ensure it is not forgotten.
There are limitations with this study. This was a small-scale study with only seven interviewees. The overall number of GRT families resident in Kingston is small and the authors were unable to engage with GRT women from Roma Gypsy backgrounds, or Bargees, Circus or Show People. Trying to recruit individuals from an underserved community was challenging within the study's time constraints. The GRT women were accessed via a trusted professional in an advocacy role, which has been shown to be conducive to researching this population (Condon et al, 2019). This enabled the authors to engage with women with whom they would otherwise have been unable and the women were at ease and more willing to share their thoughts and opinions. This is a community who do not often have their voices heard and so this study provides valuable insights into their decisions regarding immunisations.
The purpose of this study was to be an initial exploration of beliefs and perspectives, an opportunity to fact find in order to inform a larger piece of work on the common and unique barriers to vaccination uptake in underserved communities in London boroughs. The idea was to uncover the local issues that could then be worked upon in partnership with local public services. Results from this study were fed into local public health plans to improve access to screening and immunisation services in Kingston.
Conclusion
Compliance with antenatal care, strong parenting beliefs and cohesive family support were strong influences on decision-making regarding immunisations in this group of GRT women. The women interviewed emphasised their own expertise in child rearing. This was occasionally at odds with the health advice and recommended vaccination timelines provided by health professionals. The women shared their experiences of health professionals with other family and community members and this impacted on other women's intention to vaccinate. There was also a strong tendency to comply with vaccination beliefs passed down from older generations. These are key issues that should be considered when trying to improve uptake of immunisations in GRT families in a face-to-face manner. Equally, it warrants further exploration in a larger-scale study to see whether this reflects the wider community, and these insights could be used to tailor supplementary immunisation activities to improve uptake.