Background
Travellers typically experience significantly poorer health and shorter life expectancy compared to the general population [
1‐
7]. Despite this greater health need, there is low uptake of health services by Travellers, including preventive healthcare [
1‐
6,
8]. Although there is a lack of accurate information on immunisation uptake in Traveller communities in the UK a small number of local studies using parent self-report [
9‐
12] and NHS records [
10‐
13] suggest low or variable uptake of childhood immunisation. Moreover there have been several well documented outbreaks of measles and whooping cough in Traveller communities [
14,
15] (Note. Throughout this paper, we use the term Traveller in its broadest sense to include distinct and diverse Gypsy, Traveller and Roma communities, who may be settled or nomadic, and may live on authorised or unauthorised sites or in houses).
A large body of literature [
16‐
23] identifies two broad categories of factors influencing uptake of childhood and adult immunisation in the general population [
24‐
28]. The first relates to socioeconomic disadvantage where, despite vaccine acceptance, a lack of access to local and specialist services presents a barrier to uptake. The second relates to concerns about the safety or beliefs about the necessity of vaccines. There are differences in those who accept immunisation but do not complete the course (partial immunisers), those who have concerns about the safety of some vaccines but not others (selective immunisers) and those who reject immunisation altogether (non-immunisers) [
29]. These diverse groups are likely to require different support and information to enable and encourage them to take up immunisation opportunities and maintain community health locally.
To date, only a few studies [
9‐
13] have explored the barriers to immunisation uptake in Traveller communities. They identify multiple issues reflecting the difficulties in accessing wider health services experienced by marginalised, socially excluded communities [
1‐
5,
8,
30‐
32]; for example a history of discrimination leading to mistrust of ‘non Traveller’ people and official institutions, poverty, low health literacy and language barriers [
5]. Issues particular to immunisation include barriers to accessing primary care services (e.g. the absence of a permanent postal address for recall letters) [
11], parental concerns about vaccine safety [
12,
33] and objection to immunisation arising from strongly held cultural beliefs and traditions [
2]. These studies are typically focused on one Traveller community and immunisation is often one component within a study exploring several health issues with Travellers limiting the extent to which the complex nature of barriers and facilitators to immunisation is explored. Whilst Traveller communities may share similar lifestyle features that distinguish them from the general population, beliefs and cultural traditions can vary [
34]. It is, therefore important to understand whether, and how, factors that promote or inhibit immunisation differ among specific communities. Moreover, barriers may be specific to particular vaccines e.g. measles, mumps and rubella (MMR) vaccine or differ for adult and childhood vaccines. Issues associated with newer vaccines, for example, childhood flu have not always been considered, nor have evolving views about previously controversial vaccines (e.g. whooping cough, MMR) or the views of more recent migrant communities in the UK e.g. Romanian and Slovakian Roma. The UNITING study set out to advance understanding by addressing the limitations of previous research. It was a three-phase qualitative study: interviews with Travellers in the UK, interviews with Service Providers followed by workshops with Travellers and Service Providers to prioritise interventions for increasing immunisation uptake. In this paper we present Phase 1, interviews with Travellers. The aims were as follows:
1.
Investigate the views of Travellers in the UK on the barriers and facilitators to acceptability and uptake of immunisations and explore their ideas for improving immunisation uptake;
2.
Examine whether and how these responses vary across and within communities, and for different vaccines (childhood and adult).
Methods
The methods of the three study phases are described elsewhere [
35]. The theoretical framework underpinning the study was the Social Ecological Model (SEM) [
36] which recognises that the determinants of individuals’ behaviour are complex, multifaceted and operate at a number of levels (intrapersonal, interpersonal, institutional, community, policy). We used the SEM to ensure that all levels of potential influence on immunisation behaviours were explored. Acknowledging the multi-level influences on immunisation uptake is particularly relevant for understanding health behaviours in socially excluded communities such as Travellers and for informing future interventions for both policy and practice.
Setting and participants
The research focused on six Traveller communities based in four UK cities (see Table
1). The English Gypsy, European Roma and Irish Traveller communities are recognised legally as ethnic minorities [
37,
38]; despite different beliefs, customs and languages, they share common features of lifestyle and culture [
39] and are genealogically and linguistically related [
40]. In contrast the Scottish Showpeople (travelling show, circus and fairground families) are not recognised as part of the “traditional Travellers” ethnic group. Indeed, it is reported that this group does not want to have recognised ethnic minority status, self-defining as business/cultural communities. It is only their traditionally nomadic lifestyle that means that legally they are labelled as Travellers [
41]. Further detail on the six Traveller communities is presented elsewhere [
35,
42].
Table 1
Demographic characteristics of participants
Total | 174 | 24 | 15 | 9 | 48 | 17 | 20 | 14 | 27 |
Used Interpreter | 47 | 19 | 0 | 0 | 0 | 12 | 16 | 0 | 0 |
Gender |
Female | 139 | 14 | 10 | 7 | 37 | 17 | 17 | 10 | 27 |
Male | 35 | 10 | 5 | 2 | 11 | 0 | 3 | 4 | 0 |
Family role |
Mother | 64 | 9 | 5 | 4 | 19 | 8 | 7 | 5 | 7 |
Grandmother | 33 | 3 | 4 | 1 | 6 | 3 | 5 | 3 | 8 |
Pregnant woman | 5 | 0 | 0 | 0 | 2 | 0 | 0 | 0 | 3 |
Woman no children | 8 | 0 | 1 | 1 | 3 | 0 | 0 | 1 | 2 |
Adolescent girl with children | 5 | 2 | 0 | 0 | 0 | 1 | 1 | 1 | 0 |
Adolescent girl no children | 24 | 0 | 0 | 1 | 7 | 4 | 5 | 0 | 7 |
Father | 19 | 6 | 2 | 2 | 5 | 0 | 2 | 2 | 0 |
Grandfather | 5 | 1 | 0 | 0 | 2 | 0 | 0 | 2 | 0 |
Male no children | 11 | 3 | 3 | 0 | 4 | 0 | 1 | 0 | 0 |
Housing |
House/Flat | 112 | 23 | 0 | 6 | 24 | 17 | 20 | 3 | 19 |
Authorised site - caravan/trailer | 45 | 0 | 11 | 3 | 23 | 0 | 0 | 0 | 8 |
Authorised site - chalet | 15 | 0 | 4 | 0 | 0 | 0 | 0 | 11 | 0 |
Bed and Breakfast | 1 | 1 | 0 | 0 | 0 | 0 | 0 | 0 | 0 |
Missing | 1 | 0 | 0 | 0 | 1 | 0 | 0 | 0 | 0 |
Self-reported Immunisation status of participants |
Full | 59 | 7 | 4 | 2 | 24 | 5 | 4 | 11 | 2 |
Partial | 40 | 5 | 7 | 2 | 7 | 4 | 4 | 3 | 8 |
None | 11 | 1 | 0 | 3 | 4 | 1 | 0 | 0 | 2 |
Missing | 64 | 11 | 4 | 2 | 13 | 7 | 12 | 0 | 15 |
Self-reported Immunisation status of participants’ children |
Full | 69 | 10 | 8 | 6 | 20 | 7 | 10 | 0 | 8 |
Partial | 17 | 4 | 0 | 1 | 2 | 0 | 2 | 0 | 8 |
None | 2 | 0 | 2 | 0 | 0 | 0 | 0 | 0 | 0 |
N/A | 44 | 3 | 4 | 2 | 16 | 5 | 4 | 1 | 9 |
Missing | 42 | 7 | 1 | 0 | 10 | 5 | 4 | 13 | 2 |
Within each Traveller community we set out to recruit men (approximately a quarter of the sample) and women living in extended families across generations. We included young women planning families, parents and grandparents to capture a life span/cross-generational perspective as well as adolescents eligible for their three-in-one booster (diphtheria, tetanus, poliomyelitis, given at 13–18 years), girls eligible for HPV vaccine (given at 12–13 years in school); and adults eligible for the flu vaccine (pregnant women, over 65 years and those with specified long term conditions) and whooping cough vaccine (pregnant women). We also sought to include a mix of full immunisers/partial immuniser and non-immunisers (based on self-report). We planned to interview approximately 22–32 participants in each community, enabling us to look for potential differences and similarities in views within a community as well as draw out meaningful comparisons across communities.
Access and recruitment
Access to potential participants was enabled by gatekeepers who had longstanding relationships with the communities. These gatekeepers initially spoke with Travellers about the study, and distributed printed information sheets for them to take away and discuss. These documents had been developed for each Traveller community through public involvement with members of the local community, and were translated for the Roma communities. The gatekeepers identified potential participants for the study and usually facilitated interview scheduling for the local research teams. Snowball sampling [
43] also occurred. Participants were given a £15 gift voucher to thank them for their time. Recruitment and data collection occurred between December 2013 and April 2015.
Data collection
A mixture of one-to-one and small group interviews, depending on participant preference, with members of the same family/peer group were conducted. Interviews were held in locations known to participants, for example at home or in a community centre. Almost all interviews with the Roma participants were conducted with the assistance of an interpreter. With the consent of participants, interviews were recorded digitally.
A topic guide was developed to ensure consistency of data collection both within and across the six communities although the format was flexible to allow participants to raise additional issues they considered important. We focused primarily on issues arising from the UK childhood immunisation schedule [
44] but also explored views on antenatal whooping cough and flu vaccine in pregnancy as well as in older and at risk adults. Participants were asked at the start of the interview which word they used for vaccinations and this was used throughout. The terms injections, needles, jabs, jags, immunisations, inoculations, vaccinations and vaccines were identified. The researcher then asked participants for a story about any experience of having a vaccination, their views on having injections and perceived views of others, their immunisation experiences (for self, children) and ideas for increasing take up of vaccinations. Throughout the interview participants were prompted to consider the influence of the five levels of the SEM (described to participants as: self, family/friends, community, health professionals, local/national policy makers) on their views, experiences and ideas.
Data analysis
The analysis was led by the research team in York. Research team members in the other three cities were involved at different stages to enhance rigour and to ensure that the local context in which the data were collected was retained. A data analysis protocol was developed to ensure consistency across the team.
The interviews were transcribed verbatim and data subjected to thematic analysis using the Framework approach [
45] which is designed to address policy-related questions. Transcripts were checked for accuracy against the audio-recording. Ten percent of the transcripts of interviews with Roma participants, selected at random, were checked against the audio-recording by an independent interpreter.
The stages of Framework analysis were undertaken independently for each Traveller community. Participant-based group analysis [
46] was used to analyse the group interviews, with the contribution of each individual within the interview being analysed separately. QSR NVivo 10 and Microsoft Excel 2010 software packages facilitated data management.
The final step was a thematic cross-community synthesis that took account of the inferences derived from all the interview data for the Traveller sample as a whole [
47]. Using the Descriptive Findings documents and charts for each Traveller community, the data across all six communities were synthesised by four researchers to explore similarities and differences in views on barriers and facilitators to immunisation. The final themes and sub-themes were mapped to the five levels of influence within the SEM. This final level of analysis was reviewed by the entire research team.
Discussion
This is the first in-depth, qualitative study exploring Travellers’ views on childhood and selected adult immunisation from multiple communities and cities in the UK. The inclusion of diverse communities in four UK cities enabled us to identify differences and similarities in views
within each community as well as drawing out meaningful comparisons across the six Traveller communities, both for gender and different vaccines. Use of the SEM [
36] as an organising framework ensured that Travellers’ accounts were explored beyond their individual beliefs, experiences and behaviours, to include inter-personal, institutional, community and policy- related influences.
Participants represented a mix of family roles across generations and categories of immunisation status. We have no reason to believe that the communities in the study are markedly different to other Traveller communities of the same descent either in their acceptance of immunisation [
12,
31,
33,
48] or their social contexts which impact on access to immunisation services [
2,
49‐
51]. This and the rigour of the study design and conduct give confidence that findings are relevant to members of other Traveller communities of English, Irish, Romanian/Slovakian Roma and Scottish Showpeople descent are who are housed or who live on a caravan site. The findings cannot be fully extrapolated to Traveller families who relocate frequently as they may as they experience additional barriers to accessing immunisations.
Overall, it can be seen there were many common barriers and facilitators to immunisation uptake across all six communities which were similar to those found within the general population. Notably, the two Roma communities experienced additional barriers in terms of language and adapting to living in a new country. On the whole, men and women described similar barriers and facilitators. However, like the general population [
52,
53], childhood immunisation was often regarded as an area in which women took more interest, and for which they took more responsibility, than men. Women were more likely than men to discuss discrimination, the importance of free vaccinations and low literacy barriers to uptake. Barriers and facilitators were identified across the five levels of the SEM [
36]; although Travellers noticeably spoke less of policy level influences. These were more fully discussed within the interviews with Service Providers reported elsewhere [
42]. The barriers and facilitators also reflected the two broad categories of factors which are considered to influence the uptake of childhood and adult immunisation [
16‐
21], that is acceptance of vaccines and access to health services.
Acceptance of vaccines
The majority of Traveller participants expressed positive attitudes towards immunisation. This was particularly evident amongst the Roma communities, followed closely by the Bristol English Gypsy/Irish Travellers and Glasgow Scottish Showpeople. A small minority in the four English-speaking communities were sceptical about immunisation in general and only three participants expressed views indicating outright rejection of vaccinations. Leask et al. [
21] identify five parental positions towards immunisation with approximate estimates of the proportion of each group: the ‘unquestioning acceptor’ (30–40%), the ‘cautious acceptor’ (25–35%); the ‘hesitant’ (20–30%); the ‘late or selective vaccinator’ (2–27%); and the ‘refuser’ of all vaccines (<2%). These positions, based on the general population, were all evident amongst the Travellers we interviewed for childhood as well as adult vaccines; although participants discussed selective rather than late vaccination. Due to the qualitative nature of our study we cannot attribute proportions of participants to the five positions identified by Leask et al. Nevertheless, what is clear is that the distribution of these positions varied across Traveller communities. For example, most Roma participants would be classified as ‘unquestioning acceptors’ whereas the ‘selective vaccinator’ position was most evident within the English Gypsy and Irish Traveller communities. There are no existing studies investigating Travellers’ views on adult immunisation with which to compare our findings, however studies exploring Travellers’ (predominantly English Gypsy and Welsh Traveller communities) views on childhood immunisation also report mixed acceptance [
12,
31,
48]. In those studies resistance to immunisations was associated with concerns about the potential side effects and a lack of belief in the value of vaccination.
Concerns about the safety of specific vaccines were primarily historic, predominantly held by older participants and focused on MMR and the whooping cough vaccine. This is not surprising given controversies over their safety in the late 1990s/2000s (MMR) and 1970s (whole cell whooping cough — which is no longer used in the UK). As in the general population the spread of information and misinformation can result in the ‘social amplification of risk’ that quickly influences perceptions and behaviours [
54]. Indeed, this had occurred in the past for MMR in Bristol, York and London Traveller communities. However the data suggested that views have changed over time with the majority now accepting this combination vaccine which again, has parallels with the general population [
55,
56]. This appeared to be associated with the current generation of Traveller parents having better knowledge about immunisation and opportunities to build trustful relationships with health professionals, thereby relying less on lay knowledge transmitted by family or community.
This study demonstrates that variable acceptance of the adult flu vaccination identified within the general population [
57] extends to English-speaking Travellers communities. Some Traveller participants across all four English-speaking communities believed that it ‘caused flu’ and that in comparison to other immunisations is less important to have because of a perception that flu, in comparison to other vaccine preventable diseases, is relatively benign. The perception that vaccination can cause flu and concerns about side-effects have both been identified as deterrents to uptake in high risk older people and the general population [
58].
Access to health and immunisation services
Accounts from Travellers suggested that for the majority of English-speaking Traveller participants registering with a GP practice, being notified and reminded of immunisations (via letters, texts, telephone calls, face-to-face contact with health professionals) facilitated and promoted attendance for immunisations in primary care and schools. This may be related to the ‘settled’ nature of our sample who were housed or resident on authorised Traveller sites, many with established, long term relationships with GP practices and health professionals (although less so for the Roma families). Additionally, the use of reminders is one of the few interventions for which there is robust evidence of effectiveness in increasing vaccination uptake [
59,
60]. Travellers’ apparent satisfaction may also reflect that the services are enhanced for some communities (particularly the Roma) which were described within the interviews with Service Providers [
42]. The All Ireland Traveller Health Study Team [
61] suggest that understanding access to health services is complex and whilst many of the Travellers in their study (and in other studies [
4,
48,
62]) report using health services, these authors suggest it is the experience of that engagement which is important and too often is sub-optimal. In our study there were some Traveller participant accounts of frustrations with getting through on the telephone to make a GP appointment, the length of time, often several weeks, to get an appointment (including for immunisation), as well as having to wait lengthy periods in busy clinics to be seen by a health professional. This led to a minority preferring to use A&E or out of hours doctors as observed elsewhere [
39,
61]. These criticisms of primary care similarly feature in national population surveys for England and Scotland [
63] and are known to impact on people’s use of services.
With the exception of language barriers the Slovakian and Romanian Roma participants did not talk about the difficulties they faced accessing health services despite being relatively recent migrants to the UK (since the accession of their countries of origin to the European Union in 2004 and 2007). Inability to access health services effectively was a major need previously identified, particularly in Glasgow, in relation to the Roma community and so additional services had been put in place before this study was conducted. These were discussed at length in the Service Provider interviews [
42]. We have no doubt that this impacted on the families’ views of the health services. Some Roma participants also reported a lack of discrimination in the delivery of services in the UK (by most service providers) — they had been used to high levels of discrimination back home. The lack of discrimination also appeared to influence their views on accessing health services. Our findings differ to other studies with Roma [
5,
7] migrant [
64] and minority ethnic communities [
65] which report considerable barriers to accessing health services. There were other examples of difficulties in using immunisation services which were associated with broader, inter-related, socio-economic barriers that exist for Travellers and are known to impact on their access to health services more widely [
1,
4,
38,
66]. We learnt from the interviews with Service Providers [
42] that across the six Traveller communities, the Romanian Roma (and to a lesser extent Slovakian Roma) families appeared to live with the highest levels of socio-economic deprivation, which is well documented [
5,
7,
30]. In contrast, the Glasgow Scottish Showpeople spoke much less about these challenges, again resonating with existing reports [
2]. Showpeople generally run businesses, live in permanent homes in privately owned or leased yards and travel out to set up and run fairground attractions. Consistent with other studies [
3,
31,
48] living on the roadside was perceived to make it difficult to register with a GP practice, receive Health Visitor services and to be informed of forthcoming immunisation appointments. Travelling less frequently, for example to summer fairs, was not seen as a barrier to immunisation by York English Gypsy or Glasgow Scottish Showpeople participants who said that they would return to a known health professional for a scheduled immunisation appointment.
Low literacy was also identified as a barrier, to understanding written information, invitation letters for immunisation as well as communicating with health professionals, especially GPs in consultations, even among the current generation of parents. There was widespread preference for simple written information with pictures and jargon-free spoken communication by health professionals. The Roma communities also spoke at length about the additional language barriers they face in accessing health services, relying heavily on interpreters and bi-lingual health workers which were often in short supply, particularly those speaking Roma (rather than Romanian or Slovakian). These literacy and language barriers affecting Travellers’ confidence in attending appointments and engaging in conversations with health professionals [
8,
61,
66] for fear of feeling humiliated and shamed have been reported elsewhere.
Finally, trust in health professionals, particularly GPs, Health Visitors and bi-lingual Health Workers and relational continuity of care [
65] were important factors influencing immunisation acceptance and experience. This is also the case for the general population [21 23] although is perhaps more pertinent to Travellers because of their history of not accessing preventive health services and of long-standing discrimination [
39]. Many English-speaking Travellers spoke of attending the same GP practice and preferring to see the same health professional over many years. A small minority of Traveller participants from the English-speaking communities described a general lack of trust of health professionals relating to negative experiences, such as medical notes being lost or Health Visitors being perceived to be judgemental about Travellers’ culture. These experiences appeared to have damaged their relationships with health professionals and eroded trust. For some women these experiences were seen as examples of discrimination due to their Traveller status. These findings resonate strongly with other studies of Travellers’ experiences of health services [
4,
39,
48,
61] in which health professionals who are culturally well-informed and respectful are highly valued [
4,
39] and trust is developed through outreach workers mediating between health services and Travellers [
61]. Also Travellers have attributed past medical errors to discriminatory lack of care based on being a Traveller [
34]. Van Cleemput [
39] argues that discrimination by health professionals is often associated with a lack of personal experience of working with Travellers, meaning that assumptions are made based on stereotypes. She, and other authors [
2,
4,
8,
48,
50] identify a clear need for cultural awareness training for Service Providers.
Acknowledgements
The UNITING research team would like to thank all the Travellers who took part in the interviews. We are also very grateful to our Community Partners and the Independent Project Advisory Group who guided us throughout the study; and to our collaborators who facilitated our contact with the Traveller communities. These individuals are listed below. Without this support, our study would not have been possible. Thanks also to Paula Cowan (University of York) for providing administrative support and to Colin Clark and Lynn Poole (University of the West of Scotland) for their advice at the start of the study.
Community Partners
• Shirell Johnson, member of Glasgow Scottish Showpeople community
• Danielle Thomas, member of Glasgow Scottish Showpeople community
• London Gypsy and Traveller Forum
• York Travellers Trust Advisory Steering Group
Independent Project Advisory Group
• Martin Schweiger (Chair), Public Health Consultant, Public Health England
• Jill Edwards, Research Fellow, University of Leeds
• Patrice van-Cleemput, Freelance Research Consultant
Collaborators
• Hilary Beach, University of the West of England, Bristol
• Sarah Bridgman, North Somerset Community Partnership Community Interest Company
• Annie Crocker, Member of English Gypsy Community, Bristol
• Gill Francis, North East London NHS Foundation Trust
• Bridget Gallagher, NHS Greater Glasgow & Clyde
• Jacob Jablonowski, formerly Wellspring Healthy Living Centre, Bristol
• Sheila Lally, North Bristol NHS Trust
• Anne Marie McCulloch, NHS Greater Glasgow & Clyde
• Luiza McRae, Freelance Interpreter
• Gillian Thomson, NHS Greater Glasgow & Clyde
• Linda Vousden, North Bristol NHS Trust
• Lewisham Irish Community Centre
• Local Planning Group in Glasgow
• London Gypsy and Traveller Unit
• Southwark Traveller Action Group
• York Travellers Trust