UnderstaNding uptake of Immunisations in TravellIng aNd Gypsy communities (UNITING) A qualitative interview study

Article history

The research reported in this issue of the journal was funded by the HTA programme as project number 12/17/05. The contractual start date was in September 2013. The draft report began editorial review in January 2016 and was accepted for publication in April 2016. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HTA editors and publisher have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the draft document. However, they do not accept liability for damages or losses arising from material published in this report.

Declared competing interests of authors

Julie Mytton is a member of the Health Technology Assessment Maternal, Neonatal and Child Health Panel.

Disclaimer

This report contains transcripts of interviews conducted in the course of the research and contains language that may offend some readers.

Copyright statement

© Queen’s Printer and Controller of HMSO 2016. This work was produced by Jackson et al. under the terms of a commissioning contract issued by the Secretary of State for Health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

Traveller identity and history

Travellers in the UK are a heterogeneous group consisting of North Welsh Kale, South Welsh and English Romanichals, Irish Travellers (Pavees, or Mincéirs), Scottish Travellers and, increasingly, European Roma. 1 There is an ongoing debate in the UK concerning the definition of Travellers, whether they are defined by their ethnicity or their nomadic lifestyle. As Clark2 suggests, the continuing question of who are Travellers may, in part, be because of the lack of neutrality of the terms ‘Gypsy’ and ‘Traveller’ either within or outside the communities. In the Caravan Sites Act,3 Travellers are defined as ‘people of nomadic habit and lifestyle whatever their race or origin’. This definition, however, does not include those who live on permanent private sites or in houses. In contrast, Oakley4 suggests a definition of Travellers based on descent. She argues that a Traveller’s status is ascribed at birth and reinforced by their upbringing and commitment to Travellers’ values and lifestyle.

Gypsies have a very long history and are believed to have moved from India to Persia at the end of the ninth century, moving across the Middle East and becoming established all over Europe by the fifteenth century. 5 They are said to be one of the oldest ethnic minorities in the UK and were thought to have established themselves in Britain by the sixteenth century. The first official reference of Gypsies in the UK was in Scotland in 1505. 4,5 However, by 1554, Gypsies were considered ‘felons’ and executed. 2 Irish Travellers are thought to have originated from itinerant craftsmen and peasants who were forced on the road by war, famine and poverty. 6

In the twentieth century, Travellers again were a persecuted group. During the period between 1938 and late 1943, they were subjected to an extreme form of exclusion in Germany, which has been described as ‘The Great Devouring’ or ‘Gypsy Holocaust’,2 with an estimated 250,000 to 500,000 killed during this episode in history. 7 As recently as 2004, the forced sterilisation of Traveller women in Eastern Europe during communist rule has been reported. 8,9

Travellers hold a strong sense of their cultural identity, viewing themselves as separate from non-Traveller communities. 10 Nickson and Sudbery11 describe persecution as being at the ‘heart’ of Traveller identity, considering that the continued persecution of Travellers throughout history to the present day contributes to the maintenance of this. This identity based on persecution has implications for understanding the relationship between Travellers and the wider community, and the importance of ‘understanding the ethnic and cultural context’ in delivering services. 10

Traveller communities in England and Scotland

There are an estimated 54,895 ‘white: Gypsy or Irish Traveller’12 and 193,297 ‘migrant Roma’ living in England. 13 The Scottish Traveller population has been estimated at 421212 to 15,000. 14 The diversity of Travellers in the UK is increasing with greater ease of movement of populations within Europe. There are now an estimated 4400 Eastern European Roma across the UK. 15 All of these are likely to be underestimations because of the poor recording of Traveller ethnicity on public service systems, a reluctance to self-identify attributed to the history of persecution and rapidly changing inward migration. The figure of 360,000 Travellers in the UK is commonly cited. 16

The health of Travellers

Travellers typically experience significantly poorer health and shorter life expectancy than the general population. 17–24 For example, Parry et al. 20 reported that Travellers in England were 11% more likely than their age- and sex-matched comparators in the general population to have a self-reported long-term illness which limited daily activities. The life expectancy of Irish Travellers is 15 years shorter than the national average for men, and 12 years shorter for women. 25 Despite this greater health need, there is low uptake of health services by Travellers, including preventative health care. 17–22,24 As an example, individuals living in Roma communities in England were found to be less likely than non-Roma to visit a dentist, chiropodist or practice nurse, to contact NHS Direct or to be registered with a general practitioner (GP). 26 Barriers to uptake stem partly from a lack of consideration of Traveller culture by health providers when developing services, for example, reluctance by GP practices to register transient Travellers. 27 Further barriers include a history of discrimination leading to mistrust of people and institutions, poverty, low health literacy, language barriers, lack of knowledge of health systems in new countries to which they travel,21 and, in some communities, strong beliefs of ‘stoicism’, ‘self-reliance’ and ‘fatalism’ about health. 27

The UK immunisation programme

The public health benefits and cost-effectiveness of immunisation are well established,28 preventing globally between 2 and 3 million deaths each year in children and adults from diphtheria, tetanus, whooping cough, measles, mumps and rubella. 29 In the UK, effective and safe vaccines against 13 potentially damaging infections [diphtheria, tetanus, poliomyelitis, pertussis (hereafter referred to as whooping cough), Haemophilus influenzae type b, meningococcal ACWY, meningococcal B, pneumococcal, measles, mumps, rubella, influenza and rotavirus] are routinely offered to children and young people up to 18 years as part of the UK childhood immunisation programme. 30 Since 2008, girls aged 12–13 years are also offered the human papillomavirus (HPV) vaccine to protect against infections that can lead to cervical cancer. Children in specific at-risk groups are offered additional vaccines; for example, the bacillus Calmette–Guérin (BCG) vaccine is offered to infants in areas where the incidence of tuberculosis is above a specific rate or whose parents or grandparents were born in a country with high rates of tuberculosis. 31

The uptake of immunisations across the population needs to be sufficiently high so that the few individuals who are unable to be immunised, because of genuine contraindications, are protected from disease by living in a community in which there is very little circulating infection. This concept is known as herd immunity. The UK uptake rates for most of the routine vaccines in children up to 6 years are generally high and stable, approaching or meeting the 95% target required for herd immunity. 32,33 A notable exception is the seasonal flu vaccine for which 2014/15 uptake rates in England for children aged 2, 3 and 4 years were 38.5%, 39.5% and 32.9%, respectively. 34 Yet, even with good national coverage, social clustering of unprotected individuals (unimmunised/partially immunised) can lead to outbreaks of vaccine-preventable diseases. 35 Coverage of the routine three-dose HPV vaccination programme was consistently over 86% in England from 2012 to 201436 and over 80% in Scotland. 37

In addition to routine flu vaccination for children aged 2 to 17 years, which was introduced in 2013 and is gradually being rolled out and offered to the youngest children first,30 the flu vaccine is recommended for all adults over 65 years and for adults/children with chronic health conditions which put them at higher risk of serious complications of the illness, for example pregnant women, children/adults with underlying disease particularly chronic respiratory or cardiac conditions. 38 In the winter of 2014/15 uptake in England in those aged over 65 years was 73%34 and 76% in Scotland,39 close to the 75% target. However, among those at-risk under 65 years, uptake was just 50% and 54% in England 34 and Scotland,39 respectively, with the uptake by pregnant women even lower (44% and 47%, respectively). 34,39 Following a rise in cases of whooping cough in all ages and, in particular, among babies < 3 months old with deaths in infants too young to have been protected by their own immunisation course, it has been recommended since 2012 that pregnant women be offered the whooping cough vaccine between 28 and 38 weeks of pregnancy. Current uptake is 58% and 65% in England and Scotland, respectively. 40,41

One of the challenges for ensuring that groups at risk of poor immunisation uptake are targeted effectively is their identification. Until the 2011 census, ethnic group classifications did not provide for Travellers to ‘self-identify’. 42 Indeed, ethnic group is not routinely collected during registration with a GP and, even now, may be incomplete or poorly coded. 43 There is, therefore, a lack of accurate information about immunisation uptake in Traveller communities. A small number of local studies using parent self-report1,44–46 and NHS records1,47 suggest low or variable uptake of childhood immunisation. These patterns mirror data for other disadvantaged groups who are more likely to be unimmunised or not up to date, significantly increasing their risk (and consequent spread) of vaccine-preventable disease. 35,48,49 Indeed, there have been several, well-documented, outbreaks of measles and whooping cough in Traveller communities. 50,51 Adolescent girls from Traveller communities may no longer be attending school,52,53 reducing the likelihood of receiving sufficient doses of the HPV vaccine (which is now given in two doses). 30 Traveller girls were identified in a recent report54 as one of the target groups to ensure equitable uptake of the HPV vaccine. Unfortunately, most of the studies of vaccine uptake in Traveller communities are dated and it is unclear if these reflect current uptake rates in Traveller communities. In terms of adult vaccines, we found no adult whooping cough or flu vaccine uptake data for Travellers; however, they tend to have larger families,20,22,55 which is a risk factor for reduced vaccine uptake and higher prevalence of asthma20,22 and bronchitis20 (both indications for flu vaccine). This coupled with low uptake of health care, including maternity services,18 suggests uptake of both vaccines may be low.

Factors influencing the uptake of immunisation

A large body of literature56–63 identifies two broad categories of parental factors influencing uptake of childhood immunisation in the general population and high-risk groups. The first relates to socioeconomic disadvantage for which, despite not objecting to vaccines, parents lack access to resources and support to overcome logistical barriers such as having no private transport. The second relates to parents’ concerns about the safety or beliefs about the necessity of vaccines. There are differences in parents 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). 64 These different groups are likely to require different support and information to enable them to take up immunisation opportunities. Regardless of parental position on immunisation, trust in health professionals and services is paramount. 63,65 Studies have also explored factors influencing uptake of immunisation in adults 66,67 including those with high-risk conditions,68 pregnant women69,70 and minority ethnic groups. 71 The barriers appear to broadly fall into the same two categories, access and beliefs, including the perception that healthy people do not need immunisations. 72

Although many of the issues influencing vaccine uptake described in the literature are likely to be similar for Travellers, further research is needed to understand the specific issues affecting diverse Traveller communities to inform the development of interventions tailored to their needs and cultural context. To date, only a few studies1,44–47 have explored the barriers specific to immunisation uptake in Traveller communities. These identify multiple issues reflecting the difficulties in accessing wider health services experienced by marginalised, socially excluded communities. 17–21,24,73–75 Issues particular to immunisation include barriers to accessing primary care services (e.g. the absence of a permanent postal address for recall letters),45 parental concerns about the safety of vaccines46,76 and objection to immunisation arising from strongly held cultural beliefs and traditions. 18 A reluctance to ‘self-identify’ as Travellers for fear of discrimination77 and the challenge of maintaining reliable health records for transient communities19 hinder record keeping of immunisation uptake in Traveller communities.

These studies are typically small, dated or focused on one Traveller community. Although Traveller communities may share similar features of lifestyle that distinguish them from the general population, beliefs and cultural traditions can vary. 77 It is, therefore important to understand whether or not, and how, factors that promote or inhibit immunisation differ between specific communities. Moreover, immunisation has often been only one small part of studies exploring several health issues with Travellers. This limits the extent to which the complex nature of barriers to and facilitators of immunisation is explored. For example, barriers may be specific to particular vaccines [e.g. measles, mumps and rubella (MMR) vaccine], differ for adult and childhood vaccines or be specific for different Traveller communities. Many vaccines have been introduced in the last three decades (MMR in 1988; Haemophilus influenzae type b in 1992; meningococcal C in 1999; pneumococcal conjugate in 2006; HPV in 2008; rotavirus in 2013; and childhood flu in 2013) or indications for established vaccines have expanded (e.g. pregnancy flu and whooping cough vaccines in 2010 and 2012, respectively). Since several studies among Travellers were conducted in 1980/90s, issues associated with these newer vaccines have not always been considered, neither 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). Finally, we were unable to locate any studies on immunisation uptake in adults living in Traveller communities.

Interventions to increase the uptake of immunisation

The effectiveness of interventions to increase immunisation uptake among children48,78–82 and adults68,78,83,84 have also been reviewed and there are many examples of innovative health- and social-care provisions aimed at improving the health of Travellers. 17,18,85,86 Some target immunisation specifically (e.g. outreach immunisation programmes, tailored health promotion resources), whereas others are generic yet relevant to immunisation (hand-held patient records, specialist health visitors17 and cultural competence training of health professionals). 87 These interventions are rarely rigorously evaluated so it is unclear which are feasible, acceptable and (cost-)effective, in which communities they work and how they may or may not work. Finally, existing interventions are rarely informed by theoretical frameworks which can increase effectiveness by aiding understanding of the likely mechanisms of change. 88 This study set out to advance the understanding by addressing these limitations of previous research.

Research aims and objectives

Approvals and registration

The National Research Ethics Service Committee Yorkshire and The Humber – Leeds East approved the study on 23 August 2013. Research and development approval was secured from the relevant NHS organisations: Bristol Clinical Commissioning Group (CCG), York Teaching Hospital NHS Foundation Trust, Vale of York CCG, NHS Greater Glasgow and Clyde, Great Ormond Street Hospital for Children NHS Trust, Homerton University Hospital NHS Foundation Trust, Lewisham and Greenwich NHS Trust and Guys’ and St Thomas’ NHS Foundation Trust. The study was assigned the International Standard Randomised Controlled Trials Number of ISRCTN20019630 and UK Clinical Research Network Portfolio number 15182.

Study design

This was a three-phase qualitative study. The three phases and the aims they each address are presented in Figure 1. The study design comprised the first stage of the Medical Research Council’s framework for developing and evaluating complex interventions. 88 The aim of this stage is to ensure that a complex intervention ‘can reasonably be expected to have a worthwhile effect’. To this end, this stage is used to identify the components of the intervention and the mode of delivery. Questions of whether or not and how the content and delivery of the intervention might need to differ within and across populations and settings, and what are the potential barriers to and facilitators of implementation are also addressed. This stage of the framework also includes identification of an appropriate theoretical framework to inform the intervention and to aid understanding of the likely mechanisms of change. This increases the likelihood of an intervention being effective. 88

FIGURE 1.

Mapping of study aims against the phases of the UNderstanding uptake of Immunisations in TravellIng aNd Gypsy communities (UNITING) study.

Theoretical framework

The theoretical framework underpinning the research was the social ecological model (SEM),89 which recognises that individuals’ behaviour is affected by, and affects, multiple levels of influence (intrapersonal, interpersonal, institutional, community, policy; Table 1). Levels are interactive and reinforcing. 90 This multilevel focus is consistent with the World Health Organization (WHO)’s conceptualisation of health. 90 The model also identifies intervention strategies for each level of influence and it is proposed that, to achieve long-term health improvements, all five levels should be targeted simultaneously. If this is not possible, then at least two levels should be targeted. 90 We used the SEM to ensure that all levels of potential influence on immunisation behaviours were considered and we proposed to identify interventions at all five levels. Although we did not anticipate designing interventions to change national immunisation policy in a subsequent feasibility study, we considered it possible that there may be local policies and/or approaches to communicating national initiatives that fail to meet the needs of these communities and we would identify strategies to tackle this. Acknowledging these complex multifaceted determinants on behaviour is considered to be of particular relevance to understanding health behaviours (to inform future interventions) in socially excluded communities with specific health needs such as Travellers. The SEM has previously been used in the context of flu immunisation,91 child health92 and with culturally diverse93 and disadvantaged populations. 94

Setting

The research was undertaken in four UK cities and focused on six Traveller communities (see Table 2), who predominantly, but not exclusively, lived in houses or on authorised sites (privately owned, council managed). This was a complex, multisite study working with socially excluded, marginalised communities who are traditionally considered to be hard to engage in research. 95 For reasons of practicality, and to enable our approach to be refined in the light of experience, we conducted the study in two waves (wave 1, York and Bristol; and wave 2, Glasgow and London). This enabled us to learn important lessons in wave 1 to inform wave 2, for example about gaining the trust of communities to facilitate recruitment and about the organisation of the phase 3 workshops.

A description of the six Traveller communities is presented in Table 2. The English Gypsy, European Roma and Irish Traveller communities are recognised in the Race Relations Act 197696 as ethnic minorities, replaced now by the Equality Act 2010. 97 Although they have different beliefs, customs and languages, they share common features of lifestyle and culture,27 and are genealogically and linguistically related. 98 In contrast, the Scottish Showpeople are not recognised in the Race Relations Act 197696 or by the aforementioned communities to be part of the ‘traditional Travellers’ ethnic group. Indeed, it is reported that they do 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. 99

We included two English Gypsy (Bristol and York) and two Eastern European Roma communities (Bristol and Glasgow). This enabled us to consider whether or not Travellers’ views and experiences of immunisation were specific to those particular communities (e.g. English Gypsy people living in York) or reflected more widely the experiences of communities of the same descent (e.g. English Gypsy communities across the UK). Romanian Roma participated in Bristol, whereas both Romanian and Slovakian families were included in Glasgow. The intention at the outset was to work with the English Gypsy community in the Bristol area and sites were selected for recruitment where predominantly English Gypsy populations reside. However, as members of the Irish Traveller community also live on the same sites, it was not considered equitable by the gatekeeper to recruit solely English Gypsies which meant we included Irish Travellers in Bristol in the study. Therefore, we also included two Irish Traveller communities (Bristol and London), which facilitated further cross-community comparison.

Participants

Access and recruitment

Data collection

A data collection protocol was developed to ensure that a consistent approach was employed across the research team.

Data analysis

Identifying the interventions to take to the workshops

A modified intervention mapping approach107 was used to identify the interventions to take to the phase 3 workshops. This method ‘maps the path from recognition of a need or problem to the identification of a solution’. First, a matrix was developed using the descriptive findings documents for the Bristol Roma and English Gypsy/Irish Traveller communities. This matrix combined the barriers to and facilitators of immunisation uptake that had emerged from the phase 1 and phase 2 interviews with ideas for interventions to increase uptake of immunisation. In order to generate as many ideas as possible for interventions, these were drawn from interviews with Travellers and service providers for that particular community, knowledge and experience of the research team and the IPAG, as well as existing literature. Two researchers then independently matched interventions to potentially relevant barriers and facilitators and then met to agree a final list of interventions to take to the first workshop (see Chapter 4, Identifying the interventions to take to the workshops) which was held in Bristol. At this point, detail from the phase 1 and phase 2 interviews pertinent to each intervention were included; for example, for the intervention ‘Identify Travellers in health records’ specific suggestions about how to do this in GP practices and across immunisation databases were added. This process enabled us to produce a detailed list of interventions to take to the workshop that we were confident addressed the identified issues for both the Bristol Romanian Roma and English Gypsy/Irish Traveller communities.

To identify the interventions to take to the workshops for the other Traveller communities, the descriptive findings documents were discussed by the local research teams with the lead researcher to agree the barriers to and facilitators of immunisation uptake. When these were the same as for Bristol, the interventions identified for the Bristol workshop were chosen. When additional issues emerged for a community, additional interventions were taken to the workshop. This meant that many of the interventions were considered at several workshops, whereas others were only discussed at one workshop (see Chapter 4, Table 34).

Community partners

In each Traveller community we worked in partnership with ‘community partners’ for the duration of the study in that city. Our approach in each community (Table 6) was based on the experience of the local gatekeepers. Community partners were offered a £40 gift voucher of their choice per meeting that they attended. The number of meetings held ranged from two (Glasgow Roma, London Irish Travellers) to four (Bristol – across both communities). Over the duration of the study the community partners changed in Bristol and London, and were the same people in York and Glasgow.

Across the six communities, community partners advised on participant information about the study, recruitment, choice of gift voucher, the location/organisation of the workshops and dissemination of study findings across the community. Feedback on the PIS (see Appendix 1) was to use pictures that illustrate the type of people who need immunisations; and in York we learnt that while the photo of a man wearing glasses was acceptable, Travellers would know he was not a Traveller as they do not have their photo taken wearing glasses. In terms of recruitment, the community partners in York suggested conducting the phase 1 interviews on a day when lots of Travellers attend YTT for literacy classes and in Glasgow the community partners offered to publicise the study with others in the community and distribute the PIS. The community partners in all four cities informed our choice of venue for the phase 3 workshops by suggesting venues that were well known, and accessible, to their community. The community partners in Glasgow attended the workshops. Finally, for dissemination of the study findings to the community (see Appendix 11) in York a poster was developed by the community partners and displayed at YTT. Further dissemination ideas were to use gatekeeper organisation websites and Facebook (Facebook, Inc., Menlo Park, CA, USA; www.facebook.com) pages. In Bristol ideas about dissemination included a leaflet, a YouTube (YouTube, LLC, San Bruno, CA, USA; www.youtube.com) video that included members of the community so that the link could be shared via Facebook, and via link workers.

Independent project advisory group

The IPAG was set up at the start of the study to provide independent advice on all stages of the study. The group comprised:

• Dr Martin Schweiger (chairperson), Public Health Consultant, Public Health England

• Dr Jill Edwards, research fellow, University of Leeds, experienced in research with ‘marginalised’ communities

• Dr Patrice Van Cleemput, freelance research consultant, previously a health visitor with experience of conducting research with Travellers.

A fourth member of the group did not attend any meetings, so is not named here.

The group met four times over the duration of the study (July 2014, October 2014, June 2015 and October 2015). The group’s input focused on signposting the research team to up-to-date literature, relevant Traveller or immunisation projects/policy documents and key individuals with useful expertise; offering views on the emerging interview findings; suggesting ideas for interventions to be taken to the phase 3 workshops; and inputting on the discussion chapter of this final report.

Participants

Travellers

We interviewed 174 Traveller participants from six Traveller communities in four UK cities. These communities were identified as Romanian Roma and English Gypsy/Irish Traveller in Bristol; English Gypsy in York; Romanian Roma/Slovakian Roma and Scottish Showpeople in Glasgow; and Irish Travellers in London. Thirty-eight participants participated in individual interviews, while the remainder took part in group interviews. Three-quarters (n = 47) of the interviews with the Roma participants were conducted using an interpreter. A summary of the demographic characteristics of Traveller participants is presented in Figure 2 and Table 7.

FIGURE 2.

Travellers by community. (a) Traveller community by city; (b) gender by community; (c) housing by community; and (d) family role by community. EG, English Gypsy; IT, Irish Traveller.

TABLE 7 - Characteristics of Traveller participants

N/A, not applicable; SD, standard deviation.

One participant is a Welsh Gypsy.

One participant has married into the Irish Traveller community.

One participant is Hungarian.

One participant has married into the Scottish Showpeople community.

These data relate only to those Travellers who have children or grandchildren.

Only one participant.

Characteristic	All (N)	Traveller community by city (n)
		Bristol			York	Glasgow			London
		Romanian Roma	English Gypsya	Irish Travellerb	English Gypsy	Romanian Roma	Slovakian Romac	Scottish Showpeopled	Irish Traveller
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
Marital status
Single	62	6	5	3	22	6	5	2	13
Married	74	16	8	6	17	8	6	6	7
Common law partner	19	1	0	0	6	2	8	2	0
Engaged	3	0	0	0	0	0	0	3	0
Widowed	9	1	2	0	1	1	1	1	2
Separated	5	0	0	0	1	0	0	0	4
Divorced	1	0	0	0	0	0	0	0	1
Missing	1	0	0	0	1	0	0	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		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
Employment
Employed	19	4	1	0	6	3	1	4	0
Self-employed	9	1	4	0	0	0	0	4	0
Unemployed	43	12	5	5	1	0	4	0	16
Stay at home parent	43	1	2	2	11	9	11	2	5
Student	24	3	0	2	6	5	4	2	2
Disabled	3	0	2	0	1	0	0	0	0
Retired	4	0	1	0	0	0	0	2	1
Missing	29	3	0	0	23	0	0	0	3
Age (years), mean (SD); range	32.34 (4.93); 13–82	33.42 (12.56); 16–65	33.80 (18.90); 18–82	28.34 (12.25); 17–50	34.62 (15.08); 14–65	25.35 (10.89); 13–44	25.90 (12.56); 14–60	42.64 (17.73); 18–72	32.33 (14.47); 14–63
Number of children,e mean (SD); range	3.18 (2.14); 1–12	3.14 (2.11); 1–8	2.38 (1.60); 1–6	3.00 (1.79); 1–6	3.56 (1.97); 1–10	4.08 (2.94); 0–12	1.80 (1.21); 1–5	1.85 (0.90); 1–4	4.34 (2.35); 1–9
Number of grandchildren,e mean (SD); range	7.26 (8.29); 1–41	7.67 (5.77); 1–11	7.33 (2.31); 1–10	5.00 (N/A); N/Af	5.50 (4.31); 1–16	7.33 (3.21); 1–11	8.00 (10.30); 1–26	2.80 (2.68); 1–7	12.00 (15.08); 1–41
Years of residency, mean (SD); range	10.67 (9.70); 0.17–41.00	3.97 (1.94); 0.25–7.00	20.00 (1.48); 18.00–24.00	16.56 (9.74); 2.00–30.00	17.48 (9.76); 1.00–41.00	1.97 (1.74); 0.17–5.00	1.71 (1.71); 0.40–8.00	13.32 (12.16); 2.00–31.00	11.15 (7.23); 2.00–28.00

Our original recruitment target was 22–32 Traveller participants from each of the six communities. The upper limit was later increased to 45 to ensure that the sampling criteria were met following the large number of York English Gypsy Travellers attending for an interview on 1 day. The target sample was achieved for all of the communities, except for the Glasgow Scottish Showpeople. The Bristol English Gypsy and Irish Traveller community were viewed as one community, as were the Glasgow Romanian and Slovakian Roma (see Chapter 2, Setting).

A total of 139 Traveller participants were female and 35 were male. This ratio of female to male participants (3 : 1) achieved our proposed sampling aim for one-quarter of all participants to be male. We did not manage to recruit any men from the Irish Traveller community in London. As intended, we spoke to women across generations, including grandmothers (n = 33), mothers (n = 64), pregnant women (n = 5), women without children (n = 8), adolescent girls with children (n = 5) and adolescent girls with no children (n = 24). We achieved our target of 6–8 mothers in all but the Glasgow Scottish Showpeople community (n = 5). We achieved the targets of 6–8 grandmothers and 6–8 adolescent/young women in three communities (York English Gypsy, Glasgow Roma and London Irish Traveller). The men were a mix of grandfathers (n = 5), fathers (n = 19) and young men with no children (n = 11). We achieved our target of 2–4 grandfathers in two communities (York English Gypsy and Glasgow Scottish Showpeople). We did not set out to recruit young men without children; however, 11 took part across four communities (not Glasgow Scottish Showpeople or London Irish Travellers). Interviewing grandparents, parents and young people enabled us to explore intergenerational differences in attitudes and beliefs; speaking to pregnant women and older adults helped us to gain awareness of views relating to the adult whooping cough and flu vaccines. Adolescents gave us an insight into attitudes towards the HPV vaccine (girls only) and three-in-one booster.

We met our aim to interview a mix of full, partial and non-immunisers. Approximately one-third of participants (n = 59) self-reported that they were fully immunised, 40 were partially immunised and 11 had had no vaccinations. There were missing data from over one-third of participants (n = 64). We did not recruit any Glasgow Roma participants who reported having had no immunisations themselves. Parents (n = 130) self-reported the immunisation status of their children as follows: half (n = 69) said that their children were fully immunised, 17 reported partial immunisation and two said that their children had had no vaccinations. Once again there were missing data for one-third of participants (n = 42). We spoke with participants with non-immunised children only in the Bristol English Gypsy community (none self-identified as this in the other five communities). These immunisation status data should be viewed with caution. They were based on self-report, may be subject to recall and response bias and for some participants did not tie in with their accounts in the interviews. Validation of self-reported immunisation status against external sources was beyond the scope of this study.

Of the 145 adult participants, 74 were married, 62 were single and 19 had a common law partner. There were nine widowed participants, five were separated and one was divorced. Traveller participants predominantly described themselves as unemployed (n = 43), a stay-at-home parent (n = 43), student (n = 24) or employed (n = 19). Employment data were missing for half of the York participants (n = 23). Finally, the vast majority of those interviewed lived in either a house or flat (n = 112) or on an authorised caravan, trailer or chalet site (n = 60). One participant was in bed and breakfast accommodation. The Roma (Bristol and Glasgow) and Irish Travellers (Bristol and London) interviewed in this study tended to live in houses and flats, whereas the Bristol English Gypsy and York English Gypsy participants were more often living on official Traveller sites. We did not recruit any Travellers living on the roadside or on unauthorised encampments. Traveller participants’ ages ranged from 13 to 82 years (mean 32 years), and those with children had on average three children (range 1–12 children); those with grandchildren had on average seven grandchildren (range 1–41 grandchildren). The average number of years of residency was 11 years (range 2 months–41 years), noticeably shorter for the Roma participants. These characteristics (marital status, employment, housing, age, number of children/grandchildren and residency) were not part of the sampling strategy.

Service providers

We interviewed 39 service providers from four cities: Bristol (n = 8), York (n = 9), Glasgow (n = 14) and London (n = 8). Three of the interviews were group interviews (two in York and one in London), the rest were individual interviews. A summary of the demographic characteristics of service provider participants is presented in Figure 3 and Table 8.

FIGURE 3.

Service providers by city. (a) Service providers by city; and (b) service provider role by city.

TABLE 8 - Service provider titles, roles and community reach

Some service providers work with more than one community.

Title, role, community reach	All (N)	City (n)
		Bristol	York	Glasgow	London
Total	39	8	9	14	8
Frontline workers
Primary care
GP	2	1	0	1	0
Health visitor	6	2	1	3	0
Practice nurse	3	0	1	1	1
Practice manager	1	0	0	1	0
Other NHS
Outreach nurse	1	0	0	0	1
Local authority
Traveller team	2	1	0	0	1
Children’s services	2	0	1	1	0
Education
Head teacher	1	0	0	1	0
Outreach worker	1	0	1	0	0
School nurse	1	0	0	1	0
Voluntary sector
Traveller support services	2	0	0	0	2
Strategic roles
NHS
Children’s services	2	0	0	2	0
Health improvement	1	0	0	1	0
Primary care and community services	1	0	0	1	0
Screening and immunisation	9	2	3	1	3
Local authority
Public health	4	2	2	0	0
Community work witha
Whole population	16	6	6	1	3
Minority ethnic groups	1	0	0	0	1
All local Travellers	1	0	0	0	1
Romanian/Slovakian Roma	12	1	0	10	1
English Gypsies/Roma	4	1	3	0	0
Irish Travellers	5	1	0	0	4
Scottish Showpeople	3	0	0	3	0

Twenty-two participants were frontline workers employed across a wide range of roles in the NHS (n = 13), local authorities (n = 5), education (n = 2) and the voluntary sector (n = 2). Seventeen participants were in more strategic roles in the NHS (n = 13) and local authorities (n = 4). We exceeded our recruitment target of 24 to 32 participants overall and our target of interviewing 6–8 service providers in each city. We also achieved our aim to recruit a mix of frontline workers and those working in more strategic/commissioning roles for every city.

The service providers were often in immunisation, public health or health professional roles and nearly half had a remit to work with the general population which included working with local Traveller communities. Approximately one-quarter worked with Roma communities, predominantly based in Glasgow. In each of the four cities we interviewed at least one person who had a remit to specifically work with the Traveller community of interest to this research.

Barriers to and facilitators of uptake of immunisation

The findings from the interviews with Travellers and service providers are presented below. These themes and subthemes emerged from the thematic frameworks (one for Travellers and one for service providers; see Appendices 9 and 10) which were organised by the views expressed by participants rather than by the SEM89 which underpinned the study. The link between the themes, subthemes and the five levels of the model is summarised at the end of the chapter. For some themes and subthemes, both Travellers and service providers offered their views and so both perspectives are presented. For others, only Travellers or service providers spoke of them and so only those accounts are included. The majority of views expressed by Travellers were in the presence of family members or friends. Where there are differences in views for particular Traveller communities (and the ‘sub’ communities, i.e. Romanian vs. Slovakian Roma), specific vaccinations or by gender these are highlighted. Summary boxes are provided for each theme. We use a variety of terms for immunisation to reflect the range of words that participants used (see Table 5).

Knowledge about immunisation

Sources of information and advice about immunisation

Acceptance of immunisation

The majority of Traveller participants across all six communities appeared to believe that, on balance, the protective benefits of immunisation outweigh the risks such as minor side effects or short-lived discomfort and upset, meaning that they take up the offer of vaccinations for themselves and their children.

The way I look at it, the benefits outweigh it [the risks]. So I’ve had all my kids done. I’ve always made sure they’ve had everything done.

LT010b, Irish Traveller, grandmother, London

It’s not nice putting them through it, but I guess they need it don’t they, so that they don’t catch anything. I know if I didn’t take her and then anything did happen what could have protected her . . . I think she’d be worse off.

YT006b, English Gypsy, mother, York

Many service provider participants in all four cities similarly spoke of their perception that most of the Travellers who they work with, in the main, accept vaccinations, although some were cautious in offering an opinion on this because of the absence of uptake data for Travellers within routine immunisation data collection systems (see Record keeping and monitoring).

There’s very, very few people in my opinion, who actually really don’t want it. I think I have only probably come across one that actually says to me ‘we don’t want it, and we’ve thought about it’.

BH308, health visitor, Bristol

Within this generally positive disposition towards immunisation there were differences in Traveller participants’ levels of confidence in and acceptance of immunisation generally as well as for particular vaccines. There was also recognition by service providers that there are some vaccinations, such as MMR and HPV, for which uptake is more selective.

Many Traveller participants reported that they follow the advice of their GP and other health professionals because they trust them when they say that the vaccinations are beneficial and safe (see Relationships with health professionals). These participants often acknowledged that there are minor side effects, for example bruising or a red lump at the injection site, which they considered to be normal, and they shared experiences of their children having a minor reaction to a vaccination and being reassured by health professionals not to worry.

But she does get really swollen legs with injections like really badly. One time her full top leg had gone massive, but we rang doctors up and they just said that was just the reaction for the injection.

YT006b, English Gypsy, mother, York

They also described vaccination as a normal part of bringing up children these days and something that everybody was doing.

I think for us it’s natural to get injections for the babies, it’s natural, it’s what you do . . . it’s all part of rearing ‘em up and keeping ‘em safe innit? We’ve never heard of no-one [in Ireland] not getting their children injections or needles . . . until we came here.

BT112b, Irish Traveller, mother, Bristol

This general acceptance of immunisation based on trust and social norms was expressed by approximately half of the participants from the York English Gypsy and London Irish Traveller communities; three-quarters of the Bristol English Gypsy/Irish Traveller community and Glasgow Scottish Showpeople; and almost all of the Bristol and Glasgow Roma participants.

The other Traveller participants appeared to have mixed feelings about immunisation. They talked about worrying about the discomfort to their child of having the injection, their potential side effects, not always believing that a vaccination works and uncertainty of what the vaccines contain.

My granddaughter is five and . . . my daughter didn’t have all her inoculations because she took very high temperatures as a small child; she was actually in the Sick Children’s [hospital] twice . . . and in a bath of cold water and a fan, fairly, fairly scary stuff, and they didn’t know whether she should get inoculations or not, because they didn’t know what had caused it. They gave her every test that they had and they never ever found out. But if my daughter was going to be not well, sometimes she had a fairly bad reaction to whatever it was that she had.

GT208a, Scottish Showperson, grandmother, Glasgow

Rather than uncritically accepting vaccinations, many of these participants described weighing up the advantages and disadvantages before usually deciding to go ahead, believing that the diseases they protect against are more dangerous than the vaccines themselves.

Yeah I mean if it, if you’re told this is gonna protect your child against something that is potentially fatal then obviously you’re gonna do it. But then . . . you’ve got . . ., ‘oh but something could be wrong with your baby if you give her that’, do you know what I mean, it’s a lot to weigh up that. Obviously I gave mine them and, touch wood, mine are all fine.

LT007a, Irish Traveller, mother, London

These needles are really to help the children against getting polio or meningitis or stuff like that because that’s more dangerous than actually getting the needles.

BT106a, Irish Traveller, grandmother, Bristol

A few spoke of being mindful of not wanting to regret a decision not to vaccinate should their child catch a preventable disease at a later date.

Well you don’t want nowt to happen to your bairns do you? I’d never forgive myself if I took them to the hospital and they said ‘have they had their injections’ ‘No’. ‘Well they should have had that and it could have stopped whatever from happening’.

YT011b, English Gypsy, mother, York

Concerns about ‘overload’ to the immune system from multiple or combined childhood vaccines in general and more specifically about the triple-dose MMR vaccination were mentioned by a small number of participants in each of the English-speaking Traveller communities, and by one Bristol Roma mother.

Like I said, they [some other families in the community] are scared . . . if they have two immunisations one time they think something happen bad.

BT201a, Romanian Roma, mother, Bristol

In some instances, families in the Scottish Showpeople, Bristol Irish Traveller/English Gypsy and York English Gypsy communities had previously paid privately for single vaccines, instead of accepting the combined MMR vaccine for their children.

You’ve worried for months about getting jags and then it takes two seconds for that virus in your child and it’s in it canna come out. It’s horrible, it’s not nice to think about. It’s the three live viruses in the one needle . . . too much.

GT202a, Scottish Showperson, mother, Glasgow

One mother from the Scottish Showpeople community had a daughter with autism and, while she did not attribute this to the MMR vaccine directly, she pronounced herself as less pro-immunisation than before her daughter’s diagnosis and was mindful that not everything in vaccines ‘is ideal’ (GT204a, married to a Scottish Showperson, mother, Glasgow).

Concerns about Immunisation

Beliefs about specific vaccines

Vaccinations in pregnancy were largely accepted for the same reasons offered above (see Explanations behind acceptance of immunisation). Interestingly, while some women were fairly ambivalent about adult vaccinations for themselves, knowledge that the whooping cough and flu vaccinations given in pregnancy would protect the health of their child appeared to be the stimulus to have these vaccinations in pregnancy.

Yeah it’s very important for, for my family, it’s very important and me, when I was pregnant I have all the immunisation.

BT201b, Romanian Roma, mother, Bristol

There was noticeable variability of beliefs among the English Gypsy/Irish Traveller community in Bristol. Although some had accepted vaccinations during their pregnancy, a number of women in the community stated that they had declined them or indicated they would not accept them if offered during a future pregnancy. This seemed to stem from a common belief, expressed by both men and women, that the ‘immune system is low’ (BT102a, Irish Traveller, mother, Bristol) in pregnancy and ‘needles’ (BT108b, Irish Traveller, young woman with no children, Bristol) should be given after the baby is born as well as, for some, the adoption of a fatalistic attitude.

These [whooping cough] are needles that the women don’t take when they are pregnant because to them it’s God’s fate, you just don’t inject when a woman’s having a baby . . . you just leave it alone and leave it in God’s hands. What will be will be.

BT108d, Irish Traveller, father, Bristol

Concerns that were raised about specific vaccines largely related to whooping cough, MMR, HPV and flu (adult) vaccinations. Issues about these specific vaccinations were mentioned across all six communities; however, some were a particular point of discussion for particular communities.

The anxieties surrounding the whooping cough and MMR vaccines derived largely from the negative publicity of the 1970s and late 1990s/2000s alleging links to brain damage and autism for the two vaccinations, respectively.

The second big driver was MMR [vaccine], because, you know, the autism story hit . . . but prior to that there’d been resistance to MMR [vaccination] in, in the Traveller community . . . I think it came from the difficulty in distinguishing what was genuinely vaccine-related reactions from intercurrent illness, and the fact that it was a live vaccine, and the fear associated with, with giving a live vaccine. Then of course the autism story broke and that just reinforced all those prejudices. So we had a lot of trouble getting MMR [vaccination] accepted.

BH304, former immunisation co-ordinator, Bristol

Intergenerational change in beliefs about immunisation

There appeared to be an intergenerational shift in beliefs about immunisation, with the current generation of parents tending to being more positive than their grandparents, and sometimes their parents, had previously been. There was reference to ‘old people’s stories’ (BT105a, English Gypsy, grandmother, Bristol) and the traditional view of using natural remedies to cure illness as well as Travellers being frightened of immunisation in the past. This change in attitudes from seeing immunisation as dangerous to viewing it as a protective measure was mentioned by several Travellers and service providers for five of the Traveller communities. A shift in beliefs was not mentioned by any Glasgow Scottish Showpeople participants or their service providers.

A number of reasons were offered for this shift in beliefs. It was suggested that Traveller communities are now more integrated into society because many Travellers are settled and are influenced by their associations with non-Travellers through working locally and sending their children to local schools. This may have increased their confidence to access health services.

The ones who are settled and in bricks and who are in more established communities appear to engage more consistently and comfortably with the whole concept of health care and immunisation; so more commonly will be registered with a local practice and will turn up as and when appropriate.

BH302, GP, Bristol

Many Traveller participants spoke about a move over time towards trusting health professionals as a key source of information about immunisation (see Sources of information and advice about immunisation and Relationships with health professionals).

I think our generation, up to about 30, 35 years old, we accept the idea of immunisation. The older ones . . . they are a bit [uncertain] . . . because they didn’t go to the doctor so often.

BT218a, Romanian Roma, father, Bristol

Improved literacy (see Language and literacy) in the younger generations was also seen as a reason for the change in attitudes, with parents now proactively accessing information about immunisation from a variety of sources. This has led to younger generations having far greater knowledge and understanding about immunisations than their parents and grandparents (see Knowledge about immunisation).

The families are very, very clued up about it and so I believe they access it more you know . . . from my experience they more take their children now, it’s getting a lot better I believe.

LH306, team leader in the voluntary sector, London

A summary of this theme is provided in Table 14.

Interpersonal influences on beliefs about immunisation

Decision-making about immunisation

Several mothers from five communities talked about being the main decision-maker about childhood immunisation (Bristol Roma participants did not actively volunteer information on this). This was considered the norm within the community principally because mothers were considered more knowledgeable than fathers about vaccination and had the main responsibility for bringing up their children.

Do you ever consult your husband on health things and health decisions? I mean if, if you were unsure about a vaccine, like the MMR [vaccination] we’ve talked about, would you say, you know, to your husband?

No, I mean, no, I mean . . . No, he mainly leaves everything to me.

In the York English Gypsy and Glasgow Scottish Showpeople communities, most of the men either described not discussing immunisations with their family or concurred with the view that their female partner knows more about childhood immunisation than they do. These men described immunisation as ‘more a woman’s thing’ (YT013a, English Gypsy, father, York).

Well the men went out and done the jobs and done all the rest and women watched the kids and made meals, did the home, home cleaning and kept the kids clean, that was it.

Has that changed over your lifetime?

No

Similar small numbers of Traveller mothers, in all six communities, described making the decision with or seeking agreement from their partners. Two Bristol Irish Traveller mothers spoke of persuading their husbands to allow their children to have their vaccinations.

He thought it was wrong to get . . . [MMR vaccination] as there was a history of Travelling people . . . their child got disabilities. He said no but after a long while of persuading I finally get him [the son] the jab.

BT107a, Irish Traveller, mother, Bristol

A summary of this theme is provided in Table 16.

Language and literacy

Language barriers for the Roma communities in Bristol and Glasgow were acknowledged by Roma participants themselves and by service providers. Challenges were identified in terms of being able to communicate with health professionals within consultations as well as understanding written information and invitation letters for immunisation.

Several Roma participants in Bristol and Glasgow who do not speak English recalled their struggles to make themselves understood to health professionals during health encounters in the absence of interpreters.

I take my son twice . . . I didn’t know what they were actual saying, I didn’t know what it was for; I didn’t understood. If I go somewhere I do manage to make myself understood; that time I didn’t . . . I did not know exactly where to go to get the flu injection.

GT102a, Slovakian Roma, mother, Glasgow

All of the service providers in Glasgow who work with Roma talked about the importance of having an interpreter in consultations, although for some there were challenges in these consultations even when an interpreter is present. For example, the appointment takes much longer and, at times, they lack confidence that interpreters are translating all that is spoken. An example of this was reference to a home visit when a family member spoke for 40 seconds and the interpreter said one word. Furthermore, the interpreters and community link workers speak Slovakian and Romanian, whereas many of the adults who did not go to school speak only Roma and there is only one Roma interpreter in the city. Some Roma participants commented that interpreters are often not available when they attend for appointments. This was also confirmed by the service providers in Glasgow. The health visitors and a school nurse all spoke of a shortage of interpreters who speak Romanian, meaning that they often struggle to do basic health visiting and health promotion with parents. A school nurse further described how the flu immunisation programme was cancelled in one school which was to be a pilot site, as she could not access the right interpreter because there was no dedicated budget for this.

And the frustrations are at times that people just don’t listen. You know last year we pulled [name of school] from immunisations because of, at that point there were more Slovakian families with Slovakian children and yet this year . . . they gave us Roma . . . they gave us Romanian, gave us Polish . . . didn’t give us Slovakian. Slovakian was the one that I needed. So it’s just really hard.

GH303, school nurse, Glasgow

A minority of service providers in Glasgow spoke of an alternative translation service, which is available to use over the telephone. However, they explained that this service is not practical to use in consultations because, as well as being time-consuming, there might be a wait of up to 12 minutes to access it. One local authority team leader expressed frustration that some receptionists in GP practices fail to use this service.

I mean we routinely hear about receptionists being rude to people, and doing the kind of shouting at people as if raising their voice could help with the communication . . . when in fact all they need to do is type a number into their phone, pick it up and it’s a speak phone system.

GH302, social services team leader, Glasgow

Service providers working with the Bristol Roma community spoke less about the use of interpreters, although a former immunisations manager suggested that more is needed than ‘just’ (BH303, former immunisation manager, Bristol) interpreters as they often come from a different, usually middle-class background. They believed that using an interpreter does not always work very well because a dialogue about immunisation is not just about language translation.

But I think the perception is, often, with public health commissioners . . . especially sort of with Roma gypsies, that you can just translate materials into that language and I think it’s not always acknowledged that perhaps it is more [an] oral culture and especially when you’ve got communities, if there’s not you know, low levels of literacy.

BH303, former immunisation manager, Bristol

Many of the Roma participants in both cities expressed a preference for spoken information rather than written in terms of being informed of appointments and learning about immunisation.

It’s better to, if someone told them, like personally speaking, rather than a leaflet.

BT205a, Romanian Roma, mother, Bristol

A GP in Glasgow agreed with this approach, describing how take-up of childhood immunisations is good because of the face-to-face work that the specialist EU health visiting team does with Roma families; in contrast, adults are sent a letter, in English, about immunisations, which they do not understand and so they do not attend. A school nurse expressed her concerns that parents sign consent forms written in English for their child’s flu vaccination without understanding what they are consenting to. In Bristol and Glasgow, bilingual link workers, based within GP practices, agencies who work with under-fives and in schools, were seen as highly valuable as they are trusted by the community and can interpret as well as follow up families for immunisation by telephoning them or visiting them at home (see Immunisation recall and reminders).

The idea was really that the health link worker would phone them up; we trained the health link workers so they were able to talk about child immunisations . . . and then the idea was that they would contact the family, try a few times, and then yeah, if they wanted support, to be with them when they attended for the appointment, and then . . . if people didn’t turn up, to do follow-up and also to ring up before the appointment.

BH303, former immunisation manager, Bristol

When information needs to be written, translating it was seen as one solution for some.

It would be better is they could send a letter . . . in Romanian because some people can’t, don’t understand what it’s all about . . . some people who don’t know how to write and read it’s difficult and then they don’t understand what the letter is about so then they don’t turn up for vaccination or they think it’s something worse, being scared.

BT203a, Romanian Roma, grandfather, Bristol

Although for some Roma participants and most service providers from different sectors (health, education and social) language translation was not seen as sufficient as literacy difficulties in a Traveller’s own language present a key barrier to understanding written information, limiting the value of the information. However, they considered this to be a relatively easy barrier to overcome, for example, by using pictures of the vaccine-preventable diseases, of someone being vaccinated, as well as a way of getting an appointment without a letter.

Pictures would be helpful for the older ones.

BT209a, Romanian Roma, father, Bristol

They can’t read the letters to start with, all they want is an appointment to know when they can go.

BH301, health visitor, Bristol

Low levels of literacy were also seen as an issue for the English-speaking Traveller communities in Bristol and York. Nearly all of the women and half of the men from the Bristol English Gypsy/Irish Traveller community talked about low levels of literacy among their community. In York, a minority of participants discussed literacy. For both communities, it was suggested that, although low levels of literacy are more common among older Travellers, it is not a problem that is exclusive to older community members.

Half of these women can’t read or write and they’re embarrassed, and not to talk big talk with the big words, to make it basic so as a Traveller woman can understand what they’re on about.

BT108c, Irish Traveller, adolescent girl with no children, Bristol

I don’t like reading anything at all. I think it looks posh anything writ down for me . . . everything looks like I can’t understand it.

BT112b, Irish Traveller, mother, Bristol

Some service providers working with these Traveller communities offered a similar view that low levels of literacy remain a problem with the current generation of parents. A teaching assistant in York with a remit for developing literacy in young children explained that many young parents with whom she works can read but struggle with writing.

Of those Traveller and service provider participants who discussed literacy, many described how low levels of literacy result in people being unable to read immunisation leaflets or letters/texts about appointments. They may struggle to make sense of conversations with health professionals, particularly GPs, if they use technical terms or medical jargon, and may feel embarrassed. A Bristol Irish Traveller mother explained that she does not understand the language her GP uses, for example ‘hepatitis B’, but that she pretends that she can so as not to look stupid. She prefers to see the health visitor, who explains things more clearly.

She’s good, I like her [the health visitor]. You’re worried about things and you say to her like ‘I don’t know what, what I should do’. She, she’ll tell you, but she’ll tell you in our words that we understand . . . whereas if you go to a doctor . . . you’ll sit there and you’re thinking ‘I don’t know what you’re saying but I’ll pretend I know otherwise I’ll look stupid’, you know what I mean?

BT112a, Irish Traveller, mother, Bristol

Like you go up to the hospital you see all these leaflets . . . about needles . . . if you could read, you could sit and read them. But you go up to a GP they’ve got nothing up like that in . . . the waiting room . . . They’ve got leaflets but it’s got no pictures of what they mean.

YT003a, English Gypsy, mother, York

Those Travellers who spoke of their own difficulty with reading and writing described how they rely on family and other community members for information about immunisation, to read out letters about appointments and to accompany them to consultations with health professionals.

If we don’t understand it because we are trying to learn to read because we could never read or write we couldn’t even put our own name until we started to study. Her daughter would read so many words out to us and tell us like what to do.

YT003b, English Gypsy, woman with no children, York

Scottish Showpeople in Glasgow and Irish Travellers in London did not mention their own literacy levels or those of their family and wider community. However, some service providers in both cities said they had observed low literacy levels among these Traveller communities. A health visitor knew of some Scottish Showpeople mothers in their twenties and thirties who struggle to read. In London, a service provider working in the voluntary sector suggested that low levels of literacy hold Travellers back from advocating for their way of life on sites. A practice nurse stated that literacy is the biggest barrier working with Traveller communities and health professionals have an expectation that service users have appropriate literacy skills.

And the other thing . . . that’s really important is the level of literacy and literacy expectations. That isn’t considered quite often at commissioning level, because people don’t understand functional literacy and they don’t understand the sort of ideas about literacy and the truth of text embedded in a non-graphical, still a non-graphical society; it’s still not focused on text in the same way as the majority culture in the UK which means that giving information [on] posters or that sort of public health campaign, isn’t as appropriate . . . and that’s a sociological anthropological thing that often isn’t taken into account when you’re trying to engage people with information.

LH303, practice nurse, London

As with the Roma communities, there was widespread support from Traveller and service providers for simple written information with pictures and a preference for verbal information from health professionals either alongside, or instead, of written information.

We’re Travellers, we can’t read or write . . . I don’t understand the big words, you’ve gotta break it down a bit for me and I don’t think that is much to ask.

BT105a, English Gypsy, grandmother, Bristol

You’ve got to put it over simple but you have to give them all the information . . . not treating them like idiots but not treating them as though they’re academics.

GT208a, Scottish Showperson, grandmother, Glasgow

I think your nurses at your doctors . . . they should have leaflets to explain everything about every injection . . . Not in big words what people can understand. If they’d just give some more information on what’s going on, put a leaflet explaining what it is instead of just ‘you need an injection, make an appointment’.

YT001a, English Gypsy, mother, York

A small minority in Bristol and York commented that Travellers will not pick up or keep leaflets because of a cultural preference for oral traditions. A similar minority emphasised the importance of health professionals verbally explaining about the side effects of immunisation.

A summary of this theme is provided in Table 17.

Discrimination

A few female participants from the English-speaking Traveller communities (sometimes just one person) described discrimination and marginalisation from health services. This included discrimination from health professionals as well as support staff in NHS premises. A Bristol English Gypsy grandmother spoke of how a nurse had dealt badly with her granddaughter’s sore throat, failing to examine her, instead chastising the grandmother for letting the young girl drink cola. She perceived this to be because she is a Traveller who ‘all get tarred with the same brush’ (BT105a, English Gypsy, Grandmother, Bristol). In York, two participants suggested that there is less discrimination by health professionals nowadays, although some remains, as it does for any minority group.

They’d get more than the sack they would be sued for absolutely thousands and thousands of pounds . . . if they was being racist and they weren’t going to treat you just because of the culture you come from.

YT007a, English Gypsy, mother, York

A York grandmother described how when her children were young their GP practice registered their family as temporary; this meant that they had to complete a form each time they attended, even though they had lived on a site for 20 years. She suggested that this was because the GP practice wanted them to go elsewhere but added that it is not like this now. One of the Glasgow Scottish Showpeople mothers reported that she did not want to discuss her problems with the nurse working at her GP practice because she ‘looked down her nose at her’ (GT208a, Scottish Showperson, grandmother, Glasgow). She added that she was not sure if this was because she is a Traveller as they are seen as ‘thieves, vagabonds, unhygienic and would steal children’ (GT208a, Scottish Showperson, grandmother, Glasgow). A mother from the London Irish Traveller community reported a lack of consideration when she missed an appointment for her child.

The health visitor was rude but I said ‘I’m here now, it’s not like I’m holding back the needles, my child is up to date with everything, she’s just 2 or 3 weeks late this time because I couldn’t get appointment from the doctors’.

LT009b, Irish Traveller, mother, London

No Roma participants in Bristol or Glasgow described experiencing discrimination from health services. Indeed two Slovakian Roma, a grandmother and a father, commented that they are treated more kindly in Scotland, ‘normally like the others’ (GT103d, Slovakian Roma, grandmother, Glasgow), than in Slovakia, where racism towards Roma is a problem.

Service providers in all four cities similarly expressed a number of concerns about discrimination against Travellers. Several Bristol service provider participants were aware of how a lack of cultural competence had an adverse effect on Travellers’ experience of health services.

I have been in meetings where particular sort of practice managers seem to think that, you know, that people are irresponsible and don’t care about their children and don’t make the effort and are lazy and that sort of thing. So I have come across those kind of attitudes.

BH303, former immunisation manager, Bristol

Some service providers suggested that doctors and nurses lack understanding of cultural differences and can feel resentful about responding to Travellers’ needs, questioning how much effort they should give to ‘chasing people round the country’ (BH304, former immunisation co-ordinator, Bristol). Indeed, one participant offered this view:

I’m not sure how appropriate it is for us to commission somebody to go trundling round sites for people who can’t be bothered to come in, because actually these folk do have transport, that’s how they travel, by definition they’ve got transport, they don’t think it’s a priority or important.

BH302, GP, Bristol

Another spoke of a colleague who did not want to take on Travellers in her caseload and attributed that to her being nervous about taking on new challenges and fearful of the ‘unknown’ (BH308, health visitor, Bristol). A manager of a local authority community centre in Bristol commented that he sees a lot of stereotyping of the Roma community but that this is done in an appropriate way, as it is seen as a way to ensure that this community, perceived to be at risk, is supported.

I think it is for good reasons because they see, as they should, legally, the Roma community as this protected characteristics element and they obviously want to be very vigilant to any risk of discrimination, that’s why they say . . . we have to provide quite a lot for this community.

BH307, manager of local authority community centre, Bristol

There was a view from the service providers in York that those who work routinely with Travellers are more understanding and less judgemental than other workers. A practice nurse described how the English Gypsy patients are regarded as part of the practice community and highly accepted within her GP practice, although she had witnessed rude comments by some patients, leading to her view that stigma and lack of respect towards the Traveller community persists.

I think people [other patients] just look at them as Gypsies and don’t look at them very highly . . . making comments about the ‘gypos’.

YH004, practice nurse, York

A teaching assistant described how a health professional (who does not usually work with Travellers) was surprised to see that Travellers’ houses and children are clean, and that they wear school uniform. She referred to other health professionals assuming that English Gypsy children will be dirty and neglected to some extent.

It’s almost making the assumption that Travellers are dirty and the children are dirty.

YH001, teaching assistant, York

A children’s centre support worker explained how she was asked for advice by Traveller parents on how to approach a teacher who they consider to be discriminating against Traveller children.

In Glasgow, service providers expressed their own views about the challenges of working with the Roma community. A GP expressed negative views, which he suggested was a response to the frustration felt when individuals fail to attend hospital appointments. A health visitor suggested that GP practices may feel that the Roma take up too much of their time because they attend at busy times and they do not speak English. As in York, the view was that those who work with Traveller families have more positive attitudes. There was also a view that discrimination is now more likely to be challenged and there is an increase in both Roma understanding of the NHS and an improvement in the attitudes of health professionals and others towards Roma people.

I think there are still pockets where they’re very much treated as ‘these people’ but I think, I think staff are more careful about what they would say about it ‘cos . . . we do have individuals that challenge within the team and say, ‘well that’s not appropriate to say that’.

GH304, NHS service team leader, Glasgow

Finally, in London, a practice nurse perceived impatience from health professionals when Travellers attended the accident and emergency (A&E) department for non-emergency conditions. A project manager from the voluntary sector described a Facebook page set up by the police about Travellers that was discriminatory but reported that Irish Travellers who participated in a recent focus group did not feel that health professionals discriminated against them.

And so in terms of . . . our focus group recently, which was about health . . . they said they had never felt discriminated against . . . and I think perhaps . . . those caring professionals would tend to treat people reasonably well.

LH307, project manager in the voluntary sector, London

A summary of this theme is provided in Table 18.

Housing

The vast majority of Traveller participants lived in caravans or chalets on official Traveller sites or in rented houses, flats or bungalows. No participants lived on the roadside (see Table 7). Two Traveller participants, one Bristol Roma father and a York English Gypsy mother, specifically spoke of how their housing (a house and caravan on an official site, respectively) facilitates take-up of immunisations because their families are more integrated into society and are located close to the local GP practice.

Housing was also identified by a minority of Traveller and service provider participants as a barrier to immunisation for a number of reasons: ensuring that recall and reminder letters reach people is challenging; health professionals visiting sites are sometimes unable to find the families they are looking for; and worry about housing means that immunisation is not a priority.

Two Glasgow Scottish Showpeople mothers explained how immunisation letters sometimes go missing because of the community postbox on site. A health visitor working with this community also described how, when visiting a family for the first time, she can struggle to identify the correct chalet as they are not numbered.

In terms of worrying about the housing itself, an Irish Traveller grandmother referred to a young single mother who lives in a flat away from her family, describing her as isolated and sleep deprived, with the result that immunisations ‘go off her radar’ (LT010b, Irish Traveller, grandmother, London). Service provider participants in Bristol, York and London similarly spoke of their perception that Traveller families living in houses can be more isolated from their community and less engaged with health services, including immunisation, than those who live on sites. In Bristol a service provider from the city council also spoke of families being moved on within privately rented accommodation. In London, the problem with housing was considered to be a lack of local authority sites and houses for Travellers as well as housing benefit being insufficient to cover private rents, leading to a fear of eviction.

The local authorities just haven’t got the properties or the accommodation so a lot of the families are being shipped out . . . they’re losing their family network, they’re losing all their support networks . . . One [barrier] is the lack of sites. Families who are placed in houses . . . they feel quite isolated and they’re, you know, away from their community and their culture . . . it’s really sad.

LH306, team leader in the voluntary sector, London

Finally, there were accounts from several Glasgow service providers of Romanian Roma families living in particularly poor, crowded housing. They described how they live in ‘wee ghettos’ (GH302, social services team leader, Glasgow) in a particular area of Glasgow, with large families sharing small spaces.

Families who are suffering from really, really unsanitary conditions, cockroaches, appalling living conditions.

GH309, NHS community health manager, Glasgow

But the Roma community in particular, because I suppose the way they live, like lots of people living together, the heat’s full on, you know, it’s always really warm when you go in, The conditions . . . make it more [likely] . . . that they’d be at risk of infestation, so you’ve got all these things going on.

GH301, health visitor, Glasgow

A summary of this theme is provided in Table 19.

Travelling

The travelling culture was discussed by several Traveller participants across the four English-speaking communities. The English Gypsies in York and Glasgow Scottish Showpeople reported living more or less permanently in their locality and travelling to fairs only in the summer months.

Are there many Travellers in York who are moving around a lot?

No we are all stable.

Obviously some of the Travellers . . .

They only travel around in the six week [school] holidays the rest [of the time] have got their own place. That’s when they mostly go away for the big horse fairs and stuff like that.

Yes but it’s not really like it used to be. They don’t really travel as much as what they used to. Like when I was at home me and my sister . . . used to travel up and down road sides a lot. Now they don’t.

These York Traveller participants identified the advantages of being settled as being close to a GP practice, routinely accessing their services, including immunisation, and developing a trustful relationship with doctors and nurses at the GP practice (see Relationships with health professionals). A York English Gypsy mother explained that, in contrast, she knew of roadside Travellers without a permanent address and who, she believes, have to reregister every 6 months with a GP practice, even if it is with the same practice.

The Scottish Showpeople participants were clear in their view that their travelling is not a barrier to immunisation because families do not travel for long periods of time, and they either change the date of the appointment or go to another GP practice for the immunisation in the same way that their children previously changed schools when travelling for long periods of time.

If you was offered a jag and you wasn’t here and you was out travelling, you would probably make another appointment wouldn’t you? You wouldn’t miss it. If you wanted it [immunisation] you wouldn’t miss it.

GT201b, Scottish Showperson, mother, Glasgow

Service providers in York and Glasgow also spoke of the English Gypsy and Scottish Showpeople communities being more settled now. A children’s centre support worker commented that families travel for only up to 6 weeks as they do not want to lose their space on the site; she added that they come back to the same GP practice. A challenge for roadside Travellers offered by a teaching assistant in York is that they are moved on by the council every 6 weeks, so are unlikely to have their immunisations. A health visitor working with the Scottish Showpeople described how families come back from travelling so that their babies can have their vaccinations and that some arrange to have their mail opened when they are away so that they know when they are due to attend.

When it’s a baby and they know their baby’s getting three lots of immunisations a month apart, they will, even if it is within the summer, they’ll make sure they come back.

GH306, health visitor, Glasgow

Among the Bristol English Gypsy/Irish Traveller and London Irish Traveller participants, views on levels of travelling and the impact on having immunisations were more mixed. In Bristol, an English Gypsy mother and an Irish Traveller grandmother spoke about how travelling makes it difficult to get to appointments for children’s vaccinations because they may not receive the invitation letter, forget about appointments, or the appointment may be for when they are away and, therefore, it is a ‘hassle’ to attend.

When Travellers have to book things, they never keep to it if they’re travelling about . . . We think injections are good but they just can’t be arsed with the hassle . . . ‘cos they’re never in one place more than, well, a couple of weeks . . . ‘cos the doctor won’t see you half the time, will he?

BT111b, English Gypsy, mother, Bristol

Two other Bristol English Gypsy mothers mentioned that, although they missed their own immunisations when pregnant because of travelling, they ensured that they came back for their children’s appointments. Similarly, in London, five mothers said their daughters had missed their HPV vaccination (see Attendance at school) as they were travelling, whereas others talked about travelling in the past, rather than nowadays, being a barrier to take-up of immunisation.

Service providers in Bristol described the English Gypsy/Irish Traveller community as ‘static’ (BH305, strategic lead for public health, Bristol), with high levels of GP registration and immunisation. The few who continue to travel were suggested by a GP to be less accepting of vaccinations, as well as needing to move on every few weeks, making it difficult to access health services.

The ones who are settled and in bricks and who are in more established communities appear to engage more consistently and comfortably with the whole concept of healthcare and immunisation, so more commonly will be registered with a local practice and will turn up as and when appropriate . . . There is a subset, and [in] my experience [this] relates actually more . . . to the Irish Travellers than to either the English or the Roma, they seem to be more itinerant, travel around a lot more [and] appear to be more suspicious of healthcare providers and the whole concept of immunisations.

BH302, GP, Bristol

No service providers in London offered a view about the level of travelling in the Irish Traveller community.

No Bristol Roma participants talked about travelling, except in the context of arriving in the UK. Service providers in Bristol observed that the Roma community are now fairly stable, having moved a few years ago to Birmingham for housing benefit and employment reasons and then coming back. Travelling was mentioned by just one Glasgow Romanian Roma adolescent, who said that she had missed her HPV as a result of being away. A health visitor thought that the Slovakian Roma families tend to travel to England from Glasgow regularly, whereas Romanian families travel around Europe and so are more likely to have incomplete immunisations. These families often arrive in the UK having had no vaccinations because of a need to pay for them in Romania (see Local and national strategies). A school nurse described her frustration about the travelling lifestyle of the Glasgow Roma, explaining that she gets so far with families in terms of engagement and relationship building and then they move on.

I think there’s a frustration at times that we get so far into a piece of work with a family and then they take off.

GH303, school nurse, Glasgow

A summary of this theme is provided in Table 20.

Attendance at school

A small number of female Traveller participants discussed how some adolescent girls are not at secondary school, which can present a barrier to school-based immunisations such as HPV. This was evident across Traveller communities, with the exception of the Glasgow Scottish Showpeople, among whom school attendance appeared to be good. A number of reasons were offered for this non-attendance. There was a view from some York English Gypsy participants that some girls are withdrawn from school as they enter puberty because their fathers do not like them mixing with non-Traveller boys. A young woman from York said that nowadays girls want to complete their education so that they can go on and get a job, but that this is met with resistance from some of the older generation, particularly the men.

When they [girls] get to a certain age they do not go to school because of all the bother with the boys.

YT017a, English Gypsy, grandmother, York

Slovakian Roma in Glasgow reported experiencing racism and discrimination at school. One Slovakian adolescent girl gave an example of being sworn at, saying how it made her feel.

You don’t want to talk to anyone now . . . you’re not interested about them . . . it feels like you’re different from them, like you have different, like everything different, not like them.

GT111a, Slovakian Roma, adolescent girl with no children, Glasgow

However, some London Irish Traveller mothers said their daughters had missed HPV as they were travelling or were simply just not in school that day. One spoke of how she is struggling to access the HPV injection for her home-schooled daughter.

Poor school attendance was also alluded to in the accounts from service providers in Bristol, Glasgow and London. In Glasgow, service providers said that nowadays most Roma children go to primary school and have their flu vaccination.

Certainly the ones who are in school tend to be the ones who are motivated for everything, so they tend to have their immunisations, they tend to attend school, they tend to have slightly better English, they tend to integrate a wee bit better.

GH303, school nurse, Glasgow

Their concern is low attendance by girls at secondary school, particularly for the Romanian Roma. A senior NHS manager in Glasgow admitted that some Roma social norms, including keeping children off school, are quite challenging to health workers. A service provider working for a third-sector organisation in London reported that their organisation tries to work with schools to remove barriers for Travellers and finds that schools are hard to engage with in this work.

A summary of this theme is provided in Table 21.

Poverty

Poverty was described by service providers and less so by Traveller participants for four of the Traveller communities (Bristol Roma, York English Gypsy, Glasgow Roma and London Irish Traveller). This was seen as linked to language, employment, benefit systems and housing.

In Bristol, two Roma mothers described how a lack of language skills in the community and a reluctance of employers to take on Roma workers results in limited job opportunities, leading to self-employment and unsociable hours. One described life as hard. A commissioner from Bristol City Council suggested that poverty and lack of any or skilled employment is the key issue for the Roma community, while the manager of a local authority community centre in Bristol suggested that employment is how Roma people manage to escape ‘exclusion and discrimination’.

This is a pattern that we see in economic migrants quite a lot, that they start at the very bottom and work their way up. I started in a kind of [laughs] very lowly job when I came to the UK . . . My first job was dishwashing, and I, relied on this kind of work for [a] good 6 months, even though I had a degree; so, you know, so, so it is a quite common theme. But those that we consider fairly successful are say self-employed delivery drivers, that’s pretty good, ‘cos we, do see quite a lot of that stereotypical . . . scrap metal collector, Big Issue selling, Roma as well . . . very much kind of day-to-day struggle for existence. There, there, there are people who do building work, decorating, delivery drivers, that’s, and, and it’s all within the self-employed kind of, rather than, rather than being employed.

BH307, manager of a local authority community centre, Bristol

In York, an English Gypsy mother described how the new requirement for a licence to collect and sell scrap metal now limits the work that men in the community can do and their earning potential. Service providers also spoke about limited income and increasing rent charges on official sites as issues for the community, and a children’s centre support worker spoke of the vulnerable families she sees:

We’ve got some very, very vulnerable Travellers and we’ve also got some very able Travellers, and those able ones, their voices are heard because they shout the loudest and they go to the meetings ‘cos they’re able to get there, and the more vulnerable ones, they just kinda sit quiet in the background . . . we’ve got obviously the unemployment, the poor education, the poor health, you’ve got your prison families, and you’ve got families that marry family relatives.

YH005, children’s centre support worker, York

Several service providers in Glasgow gave accounts of poverty, particularly among the Romanian Roma. Some observed that the Romanians coming to Glasgow are different from the Slovakians: they are ‘destitute with many problems’ (GH301, health visitor, Glasgow). According to another:

They’ve [the Slovakians] got a bit more money than the Romanian families that are coming. They’re much poorer, they’ve got nothing, they come here initially, they’re not entitled to anything, so sometimes you go into houses and they literally have nothing you know.

GH304, NHS team leader, Glasgow

A school nurse described how Roma families often live in ‘horrible conditions and have to wait for their benefits’ (GH303, school nurse, Glasgow). She also mentioned that Roma children are not entitled to free school meals. Another NHS service provider explained the impact of high levels of poverty on Roma families’ diet. The lack of free school meals results in children leaving school at lunchtime and ‘going to Lidl to buy doughnuts’ (GH305, NHS heath improvement worker, Glasgow), and some Romanian Roma families rely on food from the food bank. A local authority frontline worker gave a detailed account of the structural problems that contribute to Romanian Roma poverty. Romanians were granted accession rights only in January 2014 and, since then, there has been a clamp-down to limit benefits. Slovakians were granted accession rights in May 2011 and, therefore, can work and are more established. In addition, there was a belief that the numbers of Slovakian migrants has levelled off, whereas the number of Romanians arriving is increasing. This service provider also believed that the Roma come from a poorer area at home, which may mean they have a lower educational level and fewer resources to deal with the impact of migration.

In contrast, there was no mention of low incomes among the Glasgow Scottish Showpeople community either by the Travellers themselves or by service providers. Indeed, some self-identified themselves as business people and talked about their work in the interviews. In London, two service providers talked about the challenge to London Traveller communities of changes to benefit systems: a cap on housing benefit and increasing private rents, leading to families being evicted (see Housing). No Irish Travellers themselves discussed this issue.

A summary of this theme is provided in Table 22.

Access to health services

A minority of Traveller participants across all six communities described problems accessing health services. They talked about the difficulty of registering with a GP practice for those without a fixed address or living on an unofficial site (mentioned only in York and London), a frustration in getting through to the GP practice on a mobile phone to book an appointment, and being unable to get an appointment quickly, with some reporting that they had to wait for up to 2 weeks for an appointment, a particular problem for those who are travelling.

It’s very hard to get an appointment innit?

LT014b, Irish Traveller, mother, London

Yeah, it is hard. They might give you an appointment for 2 weeks’ time, by 2 weeks’ time I’m forgetting about it anyway.

LT014a, Irish Traveller, mother, London

A further complaint was about having to wait for long periods of time in the waiting room, often with tired and grumpy children. As an example, one Irish Traveller mother in London described feeling stressed as she waited for an appointment in a drop-in baby clinic.

I find it very stressful when I go in there because it’s full . . . it’s like they [other mothers] fight over who’s to get there first and they’re arguing.

LT012a, Irish Traveller, mother, London

The key consequence of this was that some Traveller participants would use out-of-hours doctors or A&E, which some described as providing a better service – ‘you are seen quicker, the doctor looks at you more carefully’ (YH005b, children’s centre support worker, York) – and this involves less paperwork, important for those who struggle to fill in forms. A London Irish Traveller mother also explained that a delay in securing an appointment meant that she sometimes forgot to attend, particularly as she has three children and many appointments to remember.

Other frustrations with health services offered by small numbers of Traveller participants were the difficulty of using the touch screen on arrival at the GP practice and the lack of time with some GPs, and to a lesser extent health visitors, because they are busy.

The doctor I like, he just told you straight . . . and you could talk to him . . . but these other two it’s like you’re trying to get a conversation with them . . . it’s just quick answers, bang, gone.

GT206a, Scottish Showperson, grandfather, Glasgow

Service providers in Bristol, York and London similarly observed that some of the Travellers they work with prefer to go to A&E and use out-of-hours services for reasons similar to those outlined above. A health visitor further suggested that ‘they tend to be reactive rather than proactive’ (YH006, health visitor, York) in using health services, using them when they are ill rather than for prevention, except in the case of childhood immunisations. Other reasons offered by service providers in London were that GP practices have long waiting lists so people cannot register, a problem worsened by the housing crisis (see Housing), and that Travellers still feel excluded by health services.

I think there’s still a great deal of feeling excluded and that’s not just ‘cos of our service. It’s because . . . any small group . . . are gonna feel that other people are making assumptions . . . and that will put up barriers, so you always need to take . . . into account that there will be negative views about Traveller communities and that needs to be recognised when any plans are being made.

LH303, practice nurse, London

Frontline service providers working with Roma communities in Bristol and Glasgow described how, when Roma arrive in the UK, they are unfamiliar with the NHS system and the need to register with a GP practice and book appointments; this, they said, results in many people turning up at the GP practice and assuming that they can wait for an appointment. The perception in Glasgow was that this has improved as Roma families have begun to understand the systems better.

But I think as time goes on, you know, it’s better, ‘cos they’ve got a better understanding, but I think that initial, you know when they’re registering and they’re initially trying to get appointments and things like that.

GH301, health visitor, Glasgow

They also identified some service delivery barriers: Roma women who are pregnant can arrive in the UK without having received any antenatal care (including immunisations) and they cannot access this care in the UK until they are registered with a GP practice and have a Community Health Index number (a registration number for patients in NHS Scotland); and one GP practice operates a policy of striking patients off its list if they do not attend three appointments. Accessing health services was not perceived to be a problem for the Glasgow Scottish Showpeople, with two NHS frontline workers suggesting that members of the community access health care when they need it and are not overly involved with health services.

Finally, several service providers explained how they tried to support Travellers in accessing health services (see Local initiatives).

A summary of this theme is provided in Table 23.

Relationships with health professionals

Relationships with health professionals, with GPs and health visitors particularly, appeared to be very important. Many Travellers, predominantly women, across all six communities described positive relationships based on trust and respect that had usually developed by attending the same GP practice and seeing the same health professionals over a long period of time.

It’s the same practice so we know the doctors and I really wouldn’t want to move myself or my kids from them because they know us as if you’re equal, if you know what I mean. [I’m] not just a patient, they know our history and get on with them.

YT002a, English Gypsy, mother, York

Other positive features that were mentioned were regular chasing by GP practices to remind families to attend appointments, which was seen as evidence that they care, and the confidence to telephone the GP practice to ask about anything they had concerns about. Two Roma mothers in Glasgow described how health professionals are ‘nice to us’ (GT102a, Slovakian Roma, mother, Glasgow), while an Irish Traveller mother in Bristol spoke fondly of a health visitor who visits their site and helps with that anything her family needs.

[She is] more like a friend than a health visitor.

BT112b, Irish Traveller, mother, Bristol

Specific to immunisation, positive examples of relationships with health professionals included a GP who had encouraged a distressed child to sit still to have an injection; and practice nurses and health visitors taking the time to discuss with parents the importance of having a particular immunisation. A Bristol English Gypsy mother explained how her health visitor had reassured her husband that MMR vaccination was safe for their child, as he was concerned about possible side effects.

A few Traveller participants explicitly spoke of preferring to see the same health professional each time for continuity of care and to build a trusting relationship so that they feel comfortable discussing their health. As an example, an English Gypsy father described that his GP had changed and he felt uncomfortable with his new GP and reluctant to talk about his concern that the flu jab makes him ill.

When I go to the doctors I ask for a specific doctor . . . so it’s like we kinda know each other . . . she lets me explain and I feel like she looks after the kids . . . better. But if you just see any doctor, ‘cos they’re not used to you, they just like diagnose you straight away, give you this and go, but I feel more comfortable with the one [doctor].

LT009a, Irish Traveller, grandmother, London

A small number of English Gypsy Travellers in York, Irish Travellers in London and Glasgow Scottish Showpeople commented that they prefer to have their vaccinations administered by a GP in the practice rather than by an outreach health visitor, a school nurse or a pharmacist. This appeared to be based on either having a more established relationship with the GP or seeing the GP as having greater expertise and being in a position of authority.

‘Cos when I got it [flu injection] proper GP give it. Proper one, yeah.

LT003b, Irish Traveller, adolescent girl with no children, London

One York English Gypsy adolescent girl commented that she does not mind whether a GP or practice nurse gives a vaccination; more important to her is the sex of the person giving the injection if it is to be administered in a place that she believes only her husband should see.

If it was just your arms or summat then that’d be alright if it was a man, but like other places like, well it’s just like you should be seeing like your husband then a woman should be doing it.

YT014a, English Gypsy, adolescent girl with no children, York

A few Traveller participants from the English-speaking communities had negative perceptions of health professionals. They spoke about wanting health professionals to spend more time with them to discuss the immunisations, specifically the pros and cons, rather than assuming that their attendance implies they are content to proceed with vaccination.

If the doctor said ‘Could you make an appointment to discuss having the [adult] flu jab’ I think more people would have it.

YT005a, English Gypsy, grandmother, York

A small number of Travellers in the Bristol English Gypsy/Irish Traveller and London Irish Traveller communities described a general lack of trust in doctors, while a ‘frustrating’ (YT005a, English Gypsy, grandmother, York) lack of continuity of care at the GP practice was mentioned in York.

There were also accounts of negative encounters and experiences with health professionals which had damaged relationships and broken down trust. Some of these were directly related to immunisation and others were not. For example, an English Gypsy grandmother spoke of how in the past a GP had called her an uncaring parent when she would not have her children immunised because she was concerned about vaccination safety.

It was only out of care that we were doing it, it wasn’t that you wanted to neglect them.

BT105a, English Gypsy, grandmother, Bristol

Two York English Gypsy mothers talked about health visitors interfering and treating them with a lack of respect, while a mother from the London Irish Traveller community described how a health visitor had directly asked some adolescent girls if they were sexually active, which she considered to be disrespectful of their culture. A Scottish Showperson mother talked about how her GP and health visitor had made her feel stupid about worrying about the MMR vaccination so she had changed health visitor. Several London Irish Travellers offered examples of health visitors not taking time to discuss immunisations fully.

The health visitors, doctors and [said], ‘don’t be so stupid, course it [MMR vaccination] didn’t cause his autism’, and you’re made to feel basically that you’re just an over-paranoid mother and you’re just looking for something to blame, and I’ll say to ‘em ‘My, my son’s got autism’. And I tell everybody that, but I’m telling you here and now that’s what caused it, and they just look at you like you’re stupid, don’t be ridiculous, don’t be ridiculous . . . I got a different health visitor and she was lovely ‘You do what you, we can’t force you what to do’. So she was, she was great.

GT202a, Scottish Showperson, mother, Glasgow

Some examples of perceived poor practice were also identified in York. Individual participants described having been given the wrong prescription, notes being lost by a GP practice and a grandfather going blind because of a mistake with an operation.

So it’s that silly little mistake . . . and that puts a lot of distrust in doctors when they start doing things like that.

YT008a, English Gypsy, mother, York

It’s frustrating though isn’t it, I don’t know, it’s like you feel neglected don’t you, you’re putting your trust in them and you want answers from them because they are the doctors.

YT005a, English Gypsy, grandmother, York

Interestingly, the Roma participants in Bristol and Glasgow did not identify any negative experiences with health professionals; and only two participants from the Scottish Showpeople referred to poor experiences.

Service providers in all four cities also talked about the importance of developing trustful relationships with Travellers. Some offered reasons why they perceive Travellers may not trust health services. Three service providers in York suggested that, on occasions, Traveller parents can feel judged by health visitors about their approach to parenting, and particularly about the norm not to breastfeed in the English Gypsy community. A NHS manager and a health visitor in Glasgow both wondered if Roma people may not trust primary care services in the UK because they associate something that is free with poor quality, either because they have no experience of free primary care provision in Romania or because in Slovakia they get specialist services from a paediatrician rather than a generalist GP.

Several of the service providers described their own good relationships with Travellers, evidenced by people coming to them for help with ‘arranging things’ (BH301, health visitor, Bristol), for reassurance about different vaccinations, asking lots of questions about health (Bristol), their drop-in clinics being very busy, people stopping them in the street to ask questions and inviting them into their homes (in Glasgow) and all of their clients being self-referrals (in London). The considerable time taken to develop these relationships was commonly acknowledged and some ways of achieving this were offered. Continuity of care was seen as paramount, as well as having the right person in specialist roles (see Local initiatives).

I think having a relationship in a GP practice that’s an ongoing thing so the same GP practice has been there for people and that’s the shift being settled, that will make a difference. Because you’ve got that point of reference, you’ve got that person to come back to.

LH303, practice nurse, London

I think if you get the right people in those jobs that build up a rapport and relationship with the community.

BH303, former immunisation manager, Bristol

In York, a practice nurse explained that she is the only person who does vaccinations with Travellers and that this continuity of care ‘works really well’ (YH004, practice nurse, York), and a children’s centre support worker described how the Traveller parents she works with bypass her colleagues to ask for her, adding that it took a year for these parents to acknowledge her by name.

Once they trust you, you’re fine.

YH005, children’s centre support worker, York

A local authority outreach worker in London runs a ‘Travellers Forum’, which Travellers and a range of service providers from health and other sectors, including the police, are invited to attend. She explained that a key aim of the forum is for Travellers to have access to these service providers so that they begin to build trust.

Conversely one-off outreach visits by health professionals who do not have a relationship with a Traveller community, for example immunisation teams going into Bristol Traveller sites to promote the flu vaccine, was considered not to have increased take up of the vaccination. A health visitor in Glasgow suggested that their Roma drop-in clinic had helped because people know where to seek them out.

I think probably the drop-in clinic itself has probably been a blessing, because that has been our way into the community. Although . . . maybe that would have happened through time, just visiting them. But I think the fact they’ve got somewhere to seek us out . . . that’s probably led like into kinda different things.

GT301, health visitor, Glasgow

Another explained how being in the role for over 5 years means that parents recognise her. She also suggested that working with interpreters who become known to families is useful as this provides some consistency. In London, several frontline workers talked about the importance of getting the face-to-face encounter with Travellers right by using eye contact, being straight talking while as the same time not dictatorial, as ‘that starts engagement in trust and relationships’ (LH303, practice nurse, London).

Conversely, two health visitors in Bristol and a NHS manager in Glasgow spoke of health visitors, on occasion, feeling threatened by large groups of young Roma men as they go to visit homes. A similar account was offered about a health visitor in York on her first visit to a Traveller site when residents surrounded her car until she explained who she was.

Sometimes the health visitors, when they’re going in to visit families, they’re going where close knit groups of young Roma men gather together, and we’ve had incidents where staff have said ‘I feel too threatened to go in there’. And we’ve had to ask the Police occasionally to sort of be a little bit more present, because sometimes . . . the health visitors were saying ‘They spoke about me in Roma, I know they were talking about me because they were looking at me and laughing at me’ you know. So there’s the element of the young male population which our health visitors find a bit threatening sometimes.

GH309, NHS community health manager, Glasgow

A summary of this theme is provided in Table 24.

Immunisation recall and reminders

Traveller participants, particularly women, across all six communities, reported a range of methods by which they are prompted to attend for immunisations for their children or themselves. Most commonly, they referred to letters from their GP practice or from school to inform them that a vaccination is due. Some spoke about receiving texts and telephone calls as a reminder to attend or to rebook a missed appointment. These recall and reminder systems appeared to be seen as effective for the majority of people, including those who travel (when texts are useful), and those facing literacy and language barriers (see Language and literacy), who described how they manage with these systems. For example, a Romanian Roma father talked about how he uses Google Translate to understand the letter, another accessed a translator at the GP practice and a York English Gypsy mother had asked a receptionist and a health visitor at the GP practice to read out the letter.

Because like the dates on the letter and which we couldn’t read because I wasn’t attending these [literacy] classes then so I took the letter to the receptionist and she read it out, have a seat until the nurse calls you through, she called us through we went through and she read the letter out and she says, ‘oh it’s just because you are asthmatic and this is to like stop you getting infections and that from the weather’.

YT003a, English Gypsy, mother, York

Ideas for improving the recall and reminder systems offered by individual Traveller participants included having texts and telephone call reminders in Romanian rather than English, and GP practices being more proactive in reminding people to attend for vaccinations they have missed.

Contact with the patients more often ‘cos they know our files and what is wrong with us, what we’ve had, what we haven’t had. It clicks up on their system that you rang for a visit and it came up on their system that you haven’t had certain jabs they should be saying to you ‘you’re missing this jab, is there any sort of time that you can arrange to come in and have it?’ Instead of just ignoring it when it comes onto their system or thinking ‘well they must know that they haven’t had that’.

YT004b, English Gypsy, adolescent girl with no children, York

Service providers in York and London described how the system of recall and reminders for immunisation is the same for everyone, Travellers and non-Travellers alike, with some acknowledgement that this does not always work for those Travellers who are not registered with a GP practice, whose children are not in school and those who move on (and so access multiple health professionals).

Child health, the, the thing to, the other thing to think about is that we hold certain records so any child who’s been given an immunisation without obviously it’s been recorded at the time on our clinical software, but if a child’s had a vaccination with another health professional, health visiting team, it goes onto a different database and we don’t automatically get informed when they have had it, we do get informed if they haven’t.

LH303, practice nurse, London

In Bristol and Glasgow, some NHS frontline service providers described the strategies they have used to tailor the recall and reminder systems to the needs of the local Traveller communities which they considered had improved uptake of immunisations. Specifically, in Bristol, a GP talked about how in her practice they identify ‘particularly challenging [to immunise]’ (BH302, GP, Bristol) families and the receptionists then contact them by text or telephone to attend for immunisation appointments. Those working with Roma families in Glasgow had set up a specific recall system so that these families are automatically recalled by letter or text to attend specialist clinics. A head teacher explained how he sends texts in different languages to Roma parents to tell them that a consent form for their child’s vaccination is being sent home and asking them to sign it. A health visitor identifies letters by caravan (e.g. first on the right) to avoid them being lost in communal postboxes.

Several Traveller women in every community also referred to being reminded about immunisations through home visits from midwives, health visitors and bilingual support workers, through their Red Books (personal child health records) and by attending the GP practice for other reasons (e.g. getting a child weighed). A small number of men and women described how when they attended for appointments for blood tests and check-up appointments for long-term conditions health professionals took the opportunity to check whether or not their immunisations were due. These face-to-face reminders appeared to be particularly well received, offering the opportunity for an explanation of the vaccinations to be provided as well as overcoming language and literacy barriers.

When she [health visitor] comes over, she tells us. It’s very good when she comes and tells us.

GT105a, Romanian Roma, adolescent girl with children, Glasgow

Yeah, with the little, little children when they were babies your, your health visitor would remind yer, and she’d keep on. Now that they’re older it’s harder, it’s harder to get, you don’t know what ones they need or what ones they don’t need, because you’ve just mentioned there about vaccine for the older ones, I didn’t know that, so it’s kinda hard to keep up when they’re older.

LT006a, Irish Traveller, grandmother, London

Service providers in all four cities also described how they use every opportunity to remind people about immunisation within their everyday face-to-face contact, which might be through outreach visits, appointments at the GP practice as well as in non-health settings, for example mother and baby groups in a children’s centre. A Bristol health visitor described how she always looks at the Red Book when she visits families, and helps families to book appointments for immunisations, going as far as reminding those who have moved away by finding a telephone number and telephoning them. In Glasgow, a GP described how valuable the EU team (who work specifically with Roma families) is in reminding parents about their children’s vaccinations, whereas this support is not available for adult immunisations, resulting in lower uptake. Some explained how they work with other health professionals, usually health visitors, to identify those who have missed their immunisations and remind them to attend. For example, a manager of a local authority community centre, a teaching assistant in York and a practice nurse in London all said that they contacted a health visitor when they identified families who were missing some immunisations.

If people come up on the defaulters list, we get a list every quarter I think and if it’s somebody who does look as though they might need more sort of close attention, having a chat, whatever, then we can talk to the health visitors and ask them to do a home visit or get in touch in another way and that would be across, that wouldn’t be special for Travellers. That’d be anybody who maybe didn’t understand or had missed that, seemed always too busy or their family was too big or whatever.

LH303, practice nurse, London

A summary of this theme is provided in Table 25.

Attending appointments for immunisations

Most Traveller participants across all six communities, the Glasgow Scottish Showpeople participants particularly, did not appear to have problems with attending appointments for immunisations.

Just take your child to the doctors, wait for your name to be shout, take ‘em in, and within seconds she’d be jabbed, out, that’s it, all over with.

BT101a, English Gypsy, mother, Bristol

We are pleased with what is happening because we have appointments and we’ve got the GP and . . . they call us to go.

GT106a, Romanian Roma, mother, Glasgow

Only two Traveller participants (both Bristol Irish Travellers) suggested that it is not usual for Travellers to follow appointments within their travelling culture.

Travellers don’t like working on appointments because they’re either moving away or the timing is wrong or they haven’t got a way of going.

BT106a, Irish Traveller, grandmother, Bristol

An alternative view was offered by some service providers. In Bristol, several NHS service providers spoke of some Travellers struggling to use an appointment system, particularly when an appointment is in 2 weeks’ time, suggesting that this is not how they live.

I think it’s because Travellers live very much in the here and now, so if they’re given an appointment say for 2 weeks’ time which is not unusual, 2 weeks is a long time in the life of, of some Travellers.

BH308, health visitor, Bristol

In York, a local authority teaching assistant suggested that it is not uncommon to have four children, meaning that it is easy to forget about immunisation appointments, especially if they are too far in the future, while another expressed concern for the ‘vulnerable’ families who are ‘busy with other things’ (YH005, teaching assistant, York).

A few Traveller participants talked about how they found it easy to change immunisation appointments when they found themselves unable to attend or if a child is unwell, although a similar small number of people described problems with rebooking appointments and having to wait several weeks for the new appointment.

It’s just like [name of son]’s not well at the moment and I rang ‘em yesterday I said ‘He’s not well, he’s got the flu’ ‘cos the doctor told me it was flu . . . so they won’t give ‘em their injections when they’re sick so I said ‘can I reschedule it?’. And it’s 2 weeks’ time I’ve gotta wait for it.

LT006a, Irish Traveller, grandmother, London

One London Irish Traveller mother said that she had had to wait 3 weeks to rebook an immunisation appointment for her child and was told off by the health visitor for delaying protecting her child.

As with general appointments, similar small numbers of participants commented on their frustration of having to wait in the waiting room with small children for immunisations, either for prebooked appointments or within a drop-in clinic. A London Irish Traveller did not like waiting for up to 3 hours with many other families in a drop-in immunisation clinic and said that her daughters were only partially immunised because of this, while a Roma adolescent girl commented that waiting times are an issue in the UK compared with Slovakia.

Because obviously if you’re going to get sick here you must wait and something can happen to you, but in Slovakia if you’re sick, you go, you are not waiting.

GT111b, Slovakian Roma, adolescent girl with no children, Glasgow

Drop-in or walk-in clinics for immunisations were seen as a sensible approach to free up appointments in GP practices, prevent people having to wait 2 weeks for an appointment and for groups of mothers to share transport as well as meet other mothers to share their concerns and experiences with. They were seen as particularly convenient for those who struggle to get to the GP practice for prebooked appointments, for example mothers with many children, people working long, antisocial hours (mentioned by a Romanian Roma mother in Bristol) and those who regularly travel.

Or a walk-in, if we have a walk-in we could just do it there and then and say right, we’re walking in today, we’re getting it done today.

LT014b, Irish Traveller, mother, London

Outreach was also discussed by some Traveller participants. In York, the general perception appeared to be that while visits from health visitors and midwives provided a good opportunity to discuss immunisations, they should only be administering vaccinations for those who struggle to attend the GP practice, for example older people. A Bristol Irish Traveller adolescent girl and Scottish Showperson mother both offered the same view.

Because like new mums they should be able to get to a doctor shouldn’t they? Most people do this in this day and age doctors are accessible but like the elderly, it’s even if they only live maybe half a mile from the doctors for an old person that half a mile can seem like 10 miles to them. So for the elderly I think there should be a nurse for a couple of hours that could go out and give them their immunisation.

YT005a, English Gypsy, grandmother, York

In London, while some preferred attending the GP practice for immunisations, a few Irish Travellers valued the health visitors who came to their sites to do vaccinations (including during the time of a measles outbreak). They suggested that this is less stressful for the children and easier for those who travel as well as those who do not have a car to get to the GP practice, and that the health visitor takes more time over discussing and giving the vaccination than happens in the GP practice.

Service providers in all four cities talked about the importance of being flexible in providing immunisation appointments for Travellers. They described several strategies that they use, adopting an opportunistic approach, delivering outreach services, tailoring appointments to be more accessible and providing specific clinics.

You know, the problem is if you, if you don’t adapt to the communities you’re working with then you end up missing people and people will not get preventative care.

GH302, social services team leader, Glasgow

Two frontline providers in Bristol and in Glasgow spoke of how they opportunistically vaccinate older children, adolescents and adults when they attend other appointments at the GP practice, as they are not sure when they will see them again.

So we used to, if we saw a young person we’d give them tetanus and polio and hope for the best. But it was not part of any co-ordinated campaign to improve coverage it was entirely opportunistic.

BH304, former immunisation co-ordinator, Bristol

These participants suggested that opportunistic vaccinations in A&E and in the non-immunisation drop-in clinic for Roma (run by the EU team in Glasgow) would be a good idea for those who are not accessing them in the GP practice.

I know this would never happen in a million years but I probably think personally the best thing to do is when you get families with, just to immunise them, whether it’s in the house or in the community clinic . . . we would just go and visit them once a month and just immunise them for that 3 months.

GH301, health visitor, Glasgow

Service providers in Bristol, York and London, in discussing outreach, all described how health visitors had previously routinely done immunisations on sites but that the approach these days is to provide that service only for those who are the ‘hardest to reach’ (YH002a, immunisation manager, York), meaning those who cannot or will not ever attend GP practices to have their immunisations, for example those who regularly travel. The general view, consistent with the view of most Travellers, seemed to be that this is a more appropriate approach as it encourages people to attend mainstream services and ‘take responsibility’ (YH006, health visitor, York) for their family’s health.

[Outreach is] spoon feeding and not encouraging them to take responsibility for their health or child’s health.

YH006, health visitor, York

There were also many examples of having a flexible approach to appointments in GP practices. A Bristol health visitor described an initiative whereby GP practices were encouraged to offer a more flexible approach in which Travellers could come in at a non-designated time for immunisations and book appointments as soon as they can, which had worked well and improved uptake in those practices that had adopted it. However, there had been some resistance in some GP practices, as it requires two nurses to be working.

I think, yeah, having, keep keep appointments so that your more opportunistic appointment system, a drop-in, a drop-in would be good but if you can’t, if they can’t quite manage the drop-in, keep it today or tomorrow. I think that sort of time, you know today or tomorrow.

BH308, health visitor, Bristol

A practice nurse in York explained how the GP practice she works with has long opening hours and puts on lots of clinics for childhood immunisations, which she considers to be more flexible than other local GP practices working with Travellers. A health visitor in Glasgow who works with Scottish Showpeople described how she often gives immunisations before families head off travelling; and, in London, a practice nurse explained that she keeps a stock of the HPV vaccine so that she can provide HPV injections for Traveller girls who do not have it in school.

Some short-term initiatives for Travellers to increase uptake of immunisations were also offered (see Local initiatives). In Glasgow, a more permanent solution had been put in place when it was found that Roma families were not attending regular immunisation clinics: two GP practices now run monthly specialist clinics and are flexible in how they work, for example they provide appointments times like 9 a.m. rather than 9.05 a.m. as this is seen to work better as people attend and health professionals have more control over the immunisations they give, to make up for those which have been missed.

There’s always this about being PC you know, about like everybody should have the same service and whatever, but I think sometimes you’ve just got to look at you know what’s best for the community as a whole. I think, as a community as a whole is to have everyone immunised isn’t it?

GH301, health visitor, Glasgow

A summary of this theme is provided in Table 26.

Record keeping and monitoring

Several service providers in all four cities observed that NHS services do not routinely have a way of recording that someone is a Traveller. As a result they do not have accurate records of uptake levels of different vaccinations to inform the funding and targeting of services. The reasons offered for this were that GP practice records typically use the 2001 census ethnicity categories,42 which do not include a Traveller option, and the Child Health Information (CHI) system does not record ethnicity. Two frontline service providers in York were concerned that recording Traveller status could be seen as discrimination.

Have to be very careful about being discriminatory, surely if you identified a certain group of the population.

YH002b, immunisation co-ordinator, York

In all four cities, service providers described employing a range of strategies to try to identify and follow up Travellers in their GP practices and health visitor caseloads. A health visitor and immunisation manager in Bristol both spoke of using the postcodes of Traveller sites and common Roma surnames to try to identify people in GP records. They spoke highly of the CHI system in terms of checking the immunisation status of Traveller families and had contacted the CHI system in other regions to enquire about families who had moved into their area; as well as using ‘verbal handovers’ (BH301, health visitor, Bristol) between health professionals to keep track of families (which was also used in York and London). A commissioner in Bristol described how previously, as part of a Roma project, they had put flags on Roma patients’ GP records to identify them, and a practice manager in Glasgow also used this system. The EU team in Glasgow reported that information about its drop-in clinic was spread by word of mouth, with the result that Roma families came to them and so were known to them and, therefore, recording ethnicity was not a problem. For them the challenge was families arriving without a record of the immunisations that they or their children have had in other countries.

Another challenge of achieving accurate immunisation uptake data was identified as the time lag from administering an immunisation in a GP practice or school and it being recorded on the CHI system, as well as a time lag in informing GP practices of immunisations given in hospital. As a York health visitor commented, Travellers may have moved on before these data were recorded. Lack of co-ordination across data systems also appeared to cause problems. A practice nurse in London described how vaccinations are recorded on different systems by different health professionals, which can mean the information cannot be accessed. Similarly, a health visitor in Bristol spoke of her frustration of not being able to access the records on Traveller families who register temporarily with a GP practice, and sharing immunisation records between midwifery and GP practices was seen as an issue. There was a general perception in Bristol, York and Glasgow that local authority and school records capture Traveller ethnicity and that sharing of these records is helpful.

I’ve been working with the immunisation team that are now responsible for imms and vaccines and screening as part of NHS England, they’ve recently been, well we’ve recently been looking at MMR [vaccination] uptake in the inner city, but not specifically Roma, Roma Gypsy communities; and some of the learning from that has been absolutely brilliant, where we’ve been able to look at those children that, that are unimmunised, and also to profile those children by using pupil-level data provided at the local authority that we don’t have within the NHS.

BH306, local authority commissioning manager, Bristol

A summary of this theme is provided in Table 27.

Local initiatives

Service providers in all four cities talked about current or previous local Traveller health or immunisation initiatives. These included programmes that were developed to raise awareness of, and increase access to, health services and uptake of immunisations as well as specialist posts to work with Travellers. Some were perceived as effective, others less so.

The health board in Glasgow had produced a ‘Pathways to Health’ resource in Romanian and Slovakian, which explained how to access health services, and information about infant feeding using pictures was being developed through ROMA-net (see Local and national strategies). A health visitor in Bristol explained that she was in the process of preparing drop-in health education sessions for home-educated children that would include immunisations, while another in London described how she gives talks about immunisation to parents at community centres where Travellers attend, adding that she takes any opportunity she can to speak to parents about immunisation.

We can never stop talking about immunisations and what I say to professionals that as long as we know that we’ve given them an informed choice and ensure that parents do understand, but we can never stop talking about immunisations ‘cos we know that it’s protected so many lives and we know that it’s saved so many lives, so we can never stop.

LH305, immunisation co-ordinator, London

There were also examples of raising awareness about particular vaccination programmes. In Bristol, an immunisations manager recalled how, in 2012, the local immunisation team had gone onto the Traveller sites with health visitors to promote MMR vaccination, and more recently a community development worker had visited Traveller families about the flu vaccine. Neither was well received, and he did not perceive this approach to be effective in increasing uptake. A similar approach in York was seen as facilitating few additional MMR vaccinations and in London promoting MMR vaccination had resulted in having doors slammed in a health visitor’s face.

I’ve just remembered when we were doing the flu actually we had someone who was our community development worker and he actually went onto the site to talk about flu and he got a lot of resistance and closed doors and that, that it wasn’t an issue, or it wasn’t important.

BH303, former immunisation manager, Bristol

On a more positive note, a school nurse in Glasgow explained that she runs school assembly sessions about HPV vaccination and meetings with Romanian and Slovakian parents about the flu immunisation using a DVD and interpreters. She believed that these sessions worked well as she was asked to attend a Roma community meeting a week later to run the session again (see Sources of information and advice about immunisation).

In terms of initiatives to facilitate access to health services, a project manager in the voluntary sector in London remembered the drive by their organisation to work with GP practices and increase registration of Travellers.

So I think that a lot of people are registered and that there was a big [name of organisation] something like 5, 10 years ago and they did a big drive and a lot of people at the point registered with GPs . . . if you speak to people they’re, they’re using the health services.

LH307, project manager in the voluntary sector, London

In Glasgow, there were several examples of current and past programmes designed to improve the health of the Roma communities, including a welfare rights campaign in primary schools to increase the number of children having free school meals, ‘Keep Well’ preventative health checks in GP practices and stop smoking services for Slovakians. The EU team ran general drop-in clinics for Roma families.

At the moment it it’s just anything that comes through the door and we are gonna try and change that around as well, you know so it is a baby clinic.

GH301, health visitor, Glasgow

There were also several examples of initiatives or changes in services specifically designed to increase the take-up of immunisations by local Travellers. In Bristol, a Travellers immunisation project organised by the community health services ran from 1990 to 2004 (until funding cuts), which had included funding a specialist health visitor and a converted van that was used to do immunisations on site. There was also a drive to encourage GP practices to be more flexible in the appointments they offer Travellers for immunisations (see Attending appointments for immunisation) and Irish Travellers were targeted for the BCG vaccination, as levels of tuberculosis are higher in this community. More recently, the health visitors had run MMR vaccination pop-up clinics for Roma families and had discussed organising this for other vaccinations, for example school-delivered injections. A screening and immunisations manager questioned whether these clinics are cost-effective. In London, an immunisation co-ordinator offered that there is now a lot of local support to enable Travellers to have immunisations, including a Red Book day when parents are invited to bring their children into the site office to have their vaccinations.

In Glasgow, a NHS manager explained that there are no specialist services for Scottish Showpeople because services are based on need and not on Traveller status.

On an individual basis. So what we haven’t done is taken a blanket approach to say that is you’re a Traveller or a Showperson then you get that, that’s different. What we’ve said is it’s based on individualised needs, and there will be individualised needs for families. So that’s really how we look at it.

GH311, NHS manager, Glasgow

Specialist health visitor roles were unanimously recognised as beneficial for Travellers. Many service providers in all four cities explained how individuals in this role were able to develop long-term trustful relationships with Travellers, supporting them to access health and welfare information and services, including the Healthy Child Programme, and assessing vulnerable families to see if they need an enhanced service. They also used to give vaccinations in people’s home.

Their primary function was to be notified if there was any new families or children coming into the area and then try and make contact with them, to liaise from a child health perspective . . . they worked very closely with other parts of the Council which might become aware of a family moving into an area and then that would get a referral triggered to the health visitor who would alert the practice or contact the family directly.

BH305, strategic lead for public health, Bristol

In Bristol and Glasgow, specialist health visitors are still funded and are clearly highly regarded. In contrast, there are currently no such posts in York and London. In these cities some service providers spoke highly of previous specialist health visitors who had done valuable work, but observed that once these individuals had left there was no longer funding made available for that post, which was seen as detrimental to the service provided now.

[Name] worked with really vulnerable families . . . whereas I think now they’re kind of skirting round the edges. Health visitors aren’t getting stuck right in.

YH001, teaching assistant, York

Community health link worker was another specialist role funded to work with Roma families in Bristol and Glasgow. These individuals were also highly valued and described as working with GP practices and schools to liaise with families and remind them/support them to attend for immunisations (see Language and literacy).

A summary of this theme is provided in Table 28.

Joined-up working

The importance of working in partnership with colleagues within one’s own organisation and sector as well as with those working in other sectors was unanimously acknowledged by service providers in all four cities.

A lot of the work is local and it’s all about local relationships.

YH002a, immunisation manager, York

This collaborative working tended to be around sharing information on Travellers with other service providers and sometimes jointly visiting families so that the appropriate professional can act, as well as taking the opportunity when coming into contact with Travellers to encourage those families to access other services. Some challenges of this joint working were offered as described below.

There were many examples of health service providers working together in order to better support Traveller families in having their immunisations (see Immunisation recall and reminders, and Record keeping and monitoring and Local initiatives). There were also several non-immunisation examples. A health visitor in Bristol explained how at one point she had accompanied a colleague who had experienced a breakdown in relationship with some families to ensure that these families received a health visiting service. She described how initially there had been friction between herself and other health visitors based on different views of her role (which others saw as larger than she did), but that this is now resolved. In Glasgow, a health visitor said that the EU team is telephoned if a Roma person turns up in the A&E department or if it is necessary to organise follow-up care for a Roma child who presents as unwell. Another health visitor who works with Roma families explained how, previously, the health visitors in the EU team picked up Roma families for 16 weeks and then passed them on to regular health visitors, which did not work too well as often families were not seen again. Now EU health visitors work with children until they go to school. This is perceived to work much better, providing continuity of care and developing trust with families.

Links between health and schools and Traveller Education Services were also described. In Bristol, a health visitor talked about how she works with the co-ordinator of the immunisation programmes in local schools, as they can identify who has not had their immunisations and she can then follow up those individuals who are Travellers. A senior manager in education spoke of how they encourage Roma families to register with GP practices. Another health visitor in Bristol spoke of liaising closely with the Traveller Education Service, which informs her if an adolescent girl who is eligible for the HPV vaccination is not in school so that she can speak to the family about alternative ways to have the injection. She also visits unauthorised encampments with someone from the Traveller Education Service to address any health needs of the children living there. The Traveller Education Service also lets her know if a family self-reports not being registered with a GP practice so she can act on that. She acknowledged that there were initially tensions in this working relationship, as she believed that the Traveller Education Service was doing things outside its remit, for example giving out leaflets about MMR vaccination despite being unable to answer questions about it. In York, a health visitor spoke of someone from the Traveller Education Service being part of her wider team. A local authority frontline worker in London described previously working with the Traveller Education Service, but noted that this service was no longer funded.

There were examples of health service providers sharing information with social care and housing teams. In Bristol, a senior manager in the local authority described how members of the social services team who are in touch with transient families communicate with health visitors so that they can go and visit new families. This was also described as happening in Glasgow as part of ROMA-Net, with health and social workers sharing information on new Roma families arriving in the city. In London, a voluntary sector frontline worker spoke of working with landlords.

There were also some links between the NHS and the local authorities. Some of these were evident in joint strategies (see Local and national strategies) and others as a result of the NHS restructure in that public health directorates now have a quality assurance role for immunisations. As an example, in York, an immunisation manager spoke of how the city council now has representation on the strategic immunisation group and three district immunisation groups. A city council teaching assistant explained that she works alongside a health visitor in attending a mother and baby group as well as doing joint home visits. This health visitor had telephoned her during a measles outbreak and asked her to remind families to have the MMR vaccination when she visited them. A children’s centre support worker (YH005, York) described herself as a ‘go-between’ for Traveller families and health visitors, she lets the health visitors know if she has concerns about children’s weight or speech and language development. In Bristol, part of the role of the Roma drop-in was seen as supporting people to book appointments with a GP, dentist and hospital consultant. A health visitor pops in to speak with families to help with this, as well as to remind families to have their immunisations (see Immunisation recall and reminders).

Finally, the children’s centre support worker in York said that the police give her advance warning of when they are going onto one of the Traveller sites so that she can be sure that she is not there at the time, for her own safety. A health visitor in Glasgow described how the police contact her if a Roma person goes missing; and a voluntary sector project manager in London reported links with the Traveller officer in the police.

A summary of this theme is provided in Table 29.

Local and national strategies

A small minority of Traveller participants, all women, talked about policy-level influences on the uptake of immunisations, and this was usually prompted by a direct question from the interviewer. Most of these participants were positive about the UK government’s policy of free immunisation explaining that, if they had to pay for them, they could not afford them.

It’s a very good thing [that immunisation is free], because there is a lot more than the Travelling community out there that would need these needles and they couldn’t afford it.

BT108c, Irish Traveller, adolescent girl with no children, Bristol

Some Bristol Roma mothers and fathers observed that UK health policies are better than in Romania, where immunisations have to be paid for.

It was difficult sometimes, because some immunisation, they need to be paid, and have some immunisation free, but it’s very important here because it’s free.

BT201a, Romanian Roma, mother, Bristol

There were suggestions from a few Traveller participants that childhood immunisations should be mandatory for school attendance, or people should be fined for not having them. An alternative view, also offered by just a few, was that the government does not care about people, is doing a bad job and so is not a credible source of motivation for immunisation.

The new government doesn’t care if you die or not.

LT001a, Irish Traveller, mother, London

They’re not doing a very good job now are they the government, making the poor richer . . . you must be bloody joking they’re making the poor poorer you know.

YT011a, English Gypsy, mother, London

Some service providers spoke of national and local strategies that drove their work with Travellers. This was particularly evident among those working with the Roma community in Glasgow, who spoke of EU funding for marginalised communities; ROMA-Net, which has local action plans for education, health, housing and employability; the Romani Local Action Plan, with 50 recommendations, some of which are health and social care; and a local area partnership. A NHS manager spoke of their frustration that, while Scotland has a national Traveller strategy, it does not have a national strategy for housed Roma, which limits access to funding. In Bristol, a senior manager in the local authority spoke of the current strategy for Gypsy, Roma and Travellers and a NHS frontline worker remembered the joint needs assessment that had been done by Bristol City Council that led to funding for improvement work on the Traveller sites. In York, a senior public health manager, the teaching assistant and community centre support worker all knew of a city council strategy for Travellers and of two community needs assessments (one very recent) which had been done with the English Gypsy community. Most of the NHS service providers had not heard of these documents. There was no mention of any national or local strategies for Scottish Showpeople or London Irish Travellers (it may be that this was simply not discussed in the interviews).

A summary of this theme is provided in Table 30.

Funding

Several service providers in all four cities spoke of a lack of funding which inhibited their work. Those working with Roma communities in both Bristol and Glasgow suggested that the reason was a lack of understanding of the complex nature of this work by senior managers and commissioners.

A local authority public health manager in York and the immunisation co-ordinators in York and London talked about cuts in funding for national immunisation campaigns and for preparing schools to deliver the flu immunisation programme. The public health manager also expressed concern that no one now funds immunisation training and had concerns about the lack of trained professionals should an outbreak occur.

There’s accidents waiting to happen really.

YH003a, acting strategic lead for public health, York

Others described having insufficient funding to do their targeted work with Travellers. Service providers in England commented on how, since the NHS restructure, budgets that had historically been protected for targeted work with Travellers, including funding for specialist health visitors, had been cut or reduced (see NHS reforms).

In Scotland, where there was no NHS restructure in 2013, funding was still an issue. A school nurse in Glasgow expressed her frustration about the lack of funding to pay for staff to carry out health education work with Roma families. She also explained that there is no budget for schools to print information and consent forms for immunisations in other languages. A head teacher concurred, offering that his school had not taken part in the pilot flu immunisation programme the year before as there had been no money to produce the consent forms in other languages and hence it was considered to be too risky to go ahead. A senior manager in the NHS in Glasgow stated that there had never been a budget for a specialist health visitor post to work with Roma families and that the resource allocation formula does not reflect how challenging and time-consuming this work is.

So we’ve always had it sitting here as an unfunded line in the budget, just to say to people look we’ve never had any money for this but its needed . . . I think what we’re left with is this EU team in the [name of Department] no funding and not an awful lot else.

GH309, NHS community health manager, Glasgow

Financial targets for GP practices were mentioned by two service providers. A Bristol City Council commissioner suggested that a historical ‘transactional’ relationship, in which the primary care trust (PCT) paid GP practices, was not helpful in achieving sustainable changes, as the work ends when resources run out. A practice manager in Glasgow commented that the GP practice suffers financially because it struggles to meet targets as a result of having Roma patients.

A summary of this theme is provided in Table 31.

NHS reforms

The 2013 NHS reforms in England, and the associated changes in commissioning and delivery of public health services, were identified by service providers in Bristol, York and London as a barrier to delivering immunisation and health visiting services generally, as well threatening the provision of specialist health services for Travellers.

Those who discussed the impact of the reforms on immunisation services generally described how the whole system has changed, with the result that it is difficult for individuals responsible for service delivery to know who to contact in the CCGs and local authorities.

I mean it was all very coherent and now it’s not. Local authorities are mandated to provide a public health advisory service to the local CCGs but exactly what that means isn’t defined, and because there’s been such a lack of capacity here, there’s hardly been any input at all, and there’s certainly been none around immunisation, that’s just not happened.

YH003a, acting strategic lead for public health, York

This also makes it difficult to understand who does what, which can mean that important services, for example provision of immunisation training (see Funding), fall through the gaps. A local authority manager in York spoke of her frustration that, although the local authority, and specifically the strategic lead for public health, has responsibility for commissioning and quality assuring the school flu immunisation programme, it actually has no direct involvement in that work.

The Director of Public Health has responsibility for the local public health system delivery but not power at all.

YH003a, acting strategic lead for public health, York

A few service providers in Bristol, York and London also mentioned the plan to move the commissioning of health visitor services for 0 to 19 years from NHS England to local authorities in October 2015. They all admitted to feeling nervous about funding cuts in local authority budgets leading to cuts in services, for example no funding for a specialist health visitor role.

Are there particular barriers to engaging the communities, improving immunisation uptake that we haven’t spoken about?

Well money is always the big one, you know, just to keep the, the funding for the health visitors is, well it’s, it’s not actually our responsibility, it will be in the future, as you know, it’ll be coming back to local authority, but just keeping the, the funding for those posts.

Finally, the NHS reforms had appeared to have had a negative impact on targeted services for Travellers and health inequalities work more widely. In Bristol, the recommendations from a Traveller Review ‘got lost’ (BH303, former immunisation manager, Bristol) when the public health team moved from the PCT to the local authority and resources were diverted from delivering the Gypsy, Roma and Traveller service, resulting in this team becoming smaller.

There’s been a massive restructuring at the city council while the Public Health was moving into the city council, and, and this alone created quite a lot of problems, so; and obviously those problems divert resources from delivering the service, so, so there was an issue with, and there is an issue with things changing so fast that you actually have to spend quite a lot of time to keep up with those changes.

BH307, project manager in the voluntary sector, Bristol

In York, an immunisation manager suggested that the current government places less emphasis on health inequalities than was the case 5–10 years ago, with the result that their service is very reactive. For example, a catch-up MMR vaccination programme would be implemented if there is a measles outbreak, rather than working proactively with the community to target services on the basis of need.

We might expect some challenge from NHS England about what are you doing about immunisation uptake in Travellers, we haven’t had that, but there’s something about, general tenure of the world, certainly this government seems to have been less emphasis on inequalities, to be frank, you know, its variations, its, it, you imagine, think back 5, 10 years there was a lot more focus on inequalities in general, you know . . . quite driven stuff, which is fine, that all just seems to have gone very quiet.

And have the funding cuts had any impact?

Well they will have done, I think. It doesn’t, it doesn’t help; if you like the extra bits, all the, the additional bits above and beyond a core service tend to go when, when you have funding.

Yeah, it’s very much pared down to core services really.

A summary of this theme is provided in Table 32.

Linking the barriers to and facilitators of uptake of immunisation to the social ecological model

Many of the themes were considered to be relevant to more than one level of the SEM. 89 Six themes were classified as intrapersonal (knowledge, sources of information and advice, acceptance of immunisation, concerns about immunisation, beliefs about specific vaccines and intergenerational change in beliefs about immunisation). Five were classified as interpersonal (intergenerational change in beliefs about immunisation, interpersonal influences on beliefs about immunisation, decision-making about immunisation, discrimination and poverty). The institutional level was linked to 14 themes (sources of information and advice, language and literacy, discrimination, travelling, attendance at school, access to health services, relationships with health professionals, immunisation recall and reminders, attending appointments for immunisation, record keeping and monitoring, local initiatives, joined-up working, local and national strategies, and funding). Community was linked to four themes (sources of information and advice, discrimination, poverty and interpersonal influences on beliefs about immunisation). Three themes (national and local strategies, funding and NHS reforms) were classified as policy.

Identifying the interventions to take to the workshops

Table 33 presents the ideas for interventions to improve uptake of immunisation mapped against the key barriers to and facilitators of uptake. As described earlier (see Chapter 2, Identifying the interventions to take to the workshops) this matrix was developed using the interview data from the two Traveller communities and their service providers in Bristol. The source (English Gypsy/Irish Travellers, Roma and service providers) of the ideas, barriers and facilitators are indicated. Twelve intervention ideas were identified to be taken forward to the first workshop (in Bristol). These fell into three categories: promoting awareness and understanding of immunisation in the Traveller community, developing trust and respect towards Travellers, and improving health services.

Following the subsequent completion of the phase 1 and 2 interviews in York, Glasgow and London, each local research team adapted and added to the original 12 interventions, depending on the interview data generated locally (see Chapter 2, Identifying the interventions to take to the workshops). This typically resulted in the addition of one or two interventions for consideration. An exception was the Scottish Showpeople in Glasgow, for whom only six intervention ideas were taken to the workshop. This reflected the view from the Scottish Showpeople and service provider interview participants that the needs of Scottish Showpeople are similar to those of the general population in Glasgow and that they require minimal specialist intervention. Conversely, the additional interventions included for consideration by Roma participants in Glasgow reflected their specific needs for increased access to language support services (see Chapter 3, Barriers to and facilitators of uptake of immunisation). The ideas for interventions taken forward for consideration at each of the phase 3 workshops are presented in Table 34. Five workshops were held: one workshop in Bristol which both the Roma and English Gypsy/Irish Traveller communities attended, one workshop in York, one in London, and two workshops in Glasgow (one for the Roma community and one for Scottish Showpeople).

Workshop participants

Travellers

A total of 51 Travellers attended a workshop (Figure 4 and Table 35). Our recruitment target was 10–12 Traveller participants from each community. This was achieved for three of the six communities (Bristol Roma, York English Gypsy and London Irish Traveller). We set out to include Traveller men and women across generations. A total of 41 participants were female; 10 were male. Overall, we included women across several generations: grandmothers (n = 13), mothers (n = 18), women without children (n = 4) and adolescent girls (n = 6). No grandmothers or adolescent girls attended from the Glasgow Roma community and no adolescent girls from the Scottish Showpeople community. No men from the Glasgow Scottish Showpeople community or the Irish Traveller community in London and no fathers from the Bristol English Gypsy/Irish Traveller or York English Gypsy communities attended a workshop. Two grandfathers were present (one Bristol Roma and one York English Gypsy). Finally, just over half (n = 29) of the participants had taken part in a phase 1 interview.

FIGURE 4.

Traveller workshop participants. (a) Participants by community; (b) gender by community; and (c) family role by community.

TABLE 35 - Characteristics of Travellers who attended a workshop

Characteristic	All	City
		Bristol			York	Glasgow			London
		Roma	English Gypsy	Irish Traveller	English Gypsy	Romanian Roma	Slovakian Roma	Scottish Showpeople	Irish Traveller
Total	51	10	5	0	12	7	2	4	11
Female	41	7	4	0	11	3	1	4	11
Male	10	3	1	0	1	4	1	0	0
Mother	18	5	2	0	4	3	1	2	1
Grandmother	13	2	1	0	4	0	0	1	5
Woman, no children	4	0	0	0	1	0	0	1	2
Adolescent girl	6	0	1	0	2	0	0	0	3
Father	7	2	0	0	0	4	1	0	0
Grandfather	2	1	0	0	1	0	0	0	0
Male, no children	1	0	1	0	0	0	0	0	0
Took part in phase 1 interview
Yes	29	9	3	0	9	0	0	3	5

Service providers

We met our recruitment target of three to four service providers with the exception of the workshop with the Glasgow Scottish Showpeople, which only one health visitor attended (Figure 5 and Table 36). Fifteen participants were frontline workers employed across a wide range of roles in the NHS (n = 10), local authorities (n = 1), education (n = 3) and the voluntary sector (n = 1). Nine participants were in more strategic roles in the NHS (n = 6) and local authorities (n = 3), and one was a student working with Travellers. We achieved our aim to recruit a mix of frontline workers and those working in more strategic/commissioning roles for every city. Approximately two-thirds (n = 16) of the service provider participants had taken part in a phase 2 interview.

FIGURE 5.

Service provider workshop participants. (a) Service providers by city; and (b) service provider role by city.

TABLE 36 - Characteristics of service providers who attended a workshop

Characteristic	All	City
		Bristol	York	Glasgow		London
				Roma	Scottish Showpeople
Total	25	6	10	4	1	4
Frontline workers
Primary care
Health visitor	6	2	2	1	1	0
Practice nurse	2	0	1	0	0	1
Other NHS
Bilingual support worker	1	0	0	1	0	0
Outreach nurse	1	0	0	0	0	1
Local authority
Children’s services	1	0	1	0	0	0
Education
School nurse	1	0	0	1	0	0
Outreach worker	2	1	1	0	0	0
Voluntary sector
Traveller support services	1	0	0	0	0	1
Strategic roles
NHS
Children’s services	1	0	0	1	0	0
Screening and immunisation	5	1	3	0	0	1
Local authority
Public health	3	1	2	0	0	0
Other
Student	1	1	0	0	0	0
Took part in phase 2 interview?
Yes	16	3	6	3	1	3

Prioritised interventions to improve uptake of immunisation

The interventions presented below were identified by Traveller and/or service provider participants within their top six ‘potentially feasible and acceptable interventions’ which could positively impact on immunisation uptake in their community. The majority of these interventions were ranked as top three interventions.

Interventions for Travellers who are housed or settled on an authorised site

Figures 6 and 7 illustrate the most important interventions to improve uptake of immunisations among Travellers who are housed or settled on an authorised site. These characteristics were typical of the Traveller participants within the UNderstanding uptake of Immunisations in TravellIng aNd Gypsy communities (UNITING) study (see Chapter 3, Participants). As such, these interventions are considered to be relevant to the vast majority of Traveller participants in the four study cities (see Chapter 5, Generalisability). The key difference between the interventions presented in Figure 6 and those in Figure 7 is the level of agreement across Travellers and service providers for each intervention. In Figure 6, the five interventions have been prioritised by all or most of the Traveller communities and/or service provider groups as within their top six interventions. In Figure 7, each of the 10 interventions has been prioritised as within the top six interventions by Travellers and/or service providers in particular communities/cities.

FIGURE 6.

Top priority interventions to improve uptake of immunisation by Travellers who are housed or settled on an authorised site, identified across communities. ‘Top priority’ intervention is defined as within the top six most important interventions to potentially improve uptake of immunisation.

FIGURE 7.

Top priority interventions to improve uptake of immunisation by Travellers who are housed or settled on an authorised site, identified by particular communities. ‘Top priority’ intervention is defined as within the top six most important interventions to potentially improve uptake of immunisation.

Five interventions were prioritised by all or most of the Traveller communities and/or service provider groups. Based on the SEM,89 these five interventions all fell within the institutional and policy levels of influence. In Figure 6, the smallest, most central circle represents the single intervention most supported by both Traveller communities and service providers; the surrounding larger circles indicate prioritised interventions with increasingly less consensus. The most supported intervention was ‘cultural competence training for health professionals and frontline staff’. The next most supported interventions were ‘identify Travellers in health records to record immunisation uptake and tailor support’ and ‘named person in GP practice who is trusted by the community for frontline service at reception desk and link to health professionals’.

BOX 1 - Detailed description of the five prioritised interventions

Intervention 1: cultural competence training for health professionals and frontline staff Components of the intervention

• National policy intervention to include cultural competence training as a key performance indicator to improve standards and best practice across all GP practices.

• Cultural competence training of health professionals and frontline staff on:

  • cultural norms of different Traveller communities towards immunisation in general; these should include positive and negative norms, for example, prioritising children and their good health within the family

  • cultural concerns regarding specific immunisations to enable staff to openly and confidently discuss these issues with Travellers

  • awareness and understanding of the prejudice that Travellers can face in general

  • removal of negative stereotypes towards Travellers and ensure trust and respect is shown towards Travellers

  • culturally appropriate methods of collecting ethnicity data from different Traveller communities

  • cultural understanding of Traveller lifestyle and values for interpreters who are often middle class and may not have previously worked with Travellers.

Mode and intensity of delivery

• As a minimum standard, training to target GPs, practice nurses, health visitors, midwives, specialist health workers and receptionists.

• Widespread support warrants national policy and guidance to achieve universal implementation and standards of service.

Differences in content and delivery of the intervention within, and across, populations and settings

• Culturally informed concerns about pregnancy vaccines and HPV were particularly evident in the Bristol English Gypsy/Irish Traveller community.

Potential barriers to and facilitators of implementation within and between Traveller communities and cities

• Existing resources may be available via some local training schemes but long-term core funding needed to enable consistency of standards and practice.

• This intervention to be closely linked with and supported by implementation of interventions 2 and 3.

Intervention 2: identify Travellers in health records to record immunisation uptake and tailor support Components of the intervention

• Policy mandate (as for 2001 census) for electronic identification of Travellers based on 2011 census which included a Traveller ethnicity category, with additional categories for Roma and Occupational Travellers.

• NHS England to provide guidance on codes for Traveller identification as part of broader guidance on codes for ethnicity.

• Central government targets for routine data collection so recording Traveller ethnicity becomes part of the ‘data dictionary’.

• National standards and protocols to provide clarity regarding confidentiality and sharing of information.

• Improved joined-up working and cross-referencing records held by NHS, schools, social services and education, for example the annual school census held by local authorities includes a Traveller code, local health worker knowledge, postcode data, distinctive surnames.

• New registration forms for GP practices to include 2011 census classification of ethnicity.

• Local health workers to check immunisation status opportunistically to update Travellers’ health records.

• Local health workers to encourage effective use of patient-held records (Red Book) as an up-to-date immunisation record.

Mode and intensity of delivery

• As a minimum, public bodies including GP practices and immunisation data sets [e.g. Cover of Vaccination Evaluated Rapidly (COVER) programme, KC50] to adopt 2011 categories, with additional categories for Roma and Occupational Travellers as indicated above.

• All childhood and adult vaccines should be recorded on the electronic record for each identified Traveller.

• Widespread support and complexity of intervention warrants national policy and guidance to achieve universal implementation and minimum standards for data protection and confidentiality.

Differences in content and delivery of the intervention within, and across, populations and settings

• Although there is widespread support for this intervention to improve service provision and record keeping, a sensitive approach is needed to take this intervention forward, with particular attention to:

  • fears of prejudice if identified as Travellers

  • a general reluctance to self-identification by Romanian and Slovakian Roma.

• The Romanian and Slovakian Roma community in Glasgow were particularly interested in improving links with health services in Romania and Slovakia so that information on ‘immunisation’ status can be shared across countries.

• This intervention was not taken to the workshop for consideration by the Scottish Showpeople community and their service providers in Glasgow as it was not supported as a potentially useful intervention based on their interview data. This is consistent with the overarching view of this Traveller community as an integral part of the local community with good access to mainstream services.

Potential barriers to and facilitators of implementation within and between Traveller communities and cities

• A lack of national policy and guidance is likely to result in variation in practice between cities.

• Existing recording systems for data on Romanian and Slovakian Roma are considered to be poor in Bristol.

• This intervention to be closely linked with, and supported by, implementation of interventions 1 and 3.

Intervention 3: named frontline person in GP practice to provide respectful and supportive service Components of the intervention

• Existing high levels of trust in individual GPs, practice nurses and health visitors across all Traveller communities provide a strong foundation on which to build this intervention.

• The named person(s) should be able to provide a consistently positive and culturally appropriate experience for the Traveller on his or her arrival at the GP practice. In many cases, this simply refers to being spoken to with respect and politeness; in other cases, Travellers may require support with literacy or language issues to complete a form or identify the appropriate care pathway.

• Receptionists or practice administrators have been identified as potentially suitable to provide this basic standard of service.

• The frontline service should include a timely referral to a health professional who has the appropriate training, competency and local knowledge to provide a culturally appropriate immunisation service.

• Culturally appropriate frontline and health-care services within the GP practice will provide continuity of care for any outreach services targeting the most socially excluded Travellers.

Mode and intensity of delivery

• Widespread support warrants national policy and guidance to achieve universal implementation and standards of care.

Differences in content and delivery of the intervention within and across populations and settings

• Good practice should be identified and shared with other GP practices.

• This intervention was not taken to the workshop for consideration by the Scottish Showpeople community and their service providers in Glasgow as, based on interview data, it was not considered a potentially useful intervention. This is consistent with the overarching view of this Traveller community as an integral part of the local community with good access to mainstream services.

Potential barriers to and facilitators of implementation within and between Traveller communities and cities

• Creation of a culturally appropriate and accessible primary care service will be of potential benefit to all childhood and adult health services for Traveller populations.

• This intervention to be closely linked with, and supported by implementation of, interventions 1 and 2.

Intervention 4: flexible and diverse systems for booking appointments, recall and reminders Components of the intervention

• The core component of this intervention is inclusion of a SMS text-based approach for immunisation recall systems, booking the appointment and regular reminders, in addition to existing letter systems.

• A combined system of both letter and SMS text communication is required because of differing literacy needs and fluctuating credit levels on mobile telephones.

• The core SMS text intervention should be demanded as standard through national policy and potentially as a quality indicator of ‘access and flexibility’ as per disability indicators.

• Appointments within 1 or 2 days of booking are more likely to be attended than appointments booked for a fortnight’s time because of some Travellers’ broad concepts of time and difficulty with the commitment of a fixed appointment.

• Existing annual reminder systems, for example for the flu vaccine, are considered to work well and should remain an integral part of any adapted system.

Mode and intensity of delivery

• This intervention was not discussed by service providers working with the Roma community in Glasgow. Discussion regarding a more flexible system for delivering the immunisations, for example out-of-hours appointments, was not supported.

• Although this intervention was not ranked within the top six priority interventions by Traveller communities and service providers in York and London, these groups did identify this intervention as very important and within their top eight priority interventions. Service providers in York ranked this as their top priority of all interventions.

• Widespread support warrants consideration for national policy and guidance to achieve universal implementation and standards of care.

Differences in content, and delivery, of the intervention within and across populations and settings

• Travellers working in low-paid employment, for example Romanian and Slovakian Roma in Bristol, often work long and antisocial hours, making it difficult to attend for immunisations within usual clinic times.

• Health visitors or other health professionals working with Traveller communities could usefully provide additional, face-to-face reminders when possible.

Potential barriers to and facilitators of implementation within and between Traveller communities and cities

• Good practice should be identified and shared with other GP practices.

• Outreach service provided by a specialist health visitor would support any letter and text system (see intervention 5).

• This intervention to be closely linked with, and supported by, implementation of interventions 2 and 5.

Intervention 5: protected funding for health visitor specialising in Traveller health including immunisation Components of the intervention

• The specialist service provides an important outreach component to target those families who do not access mainstream services.

• The outreach service increases access to culturally appropriate and personalised information and service support, referral to immunisation services within the GP practice and improved linkages between Traveller families and the GP practice.

• Practice-based services delivered by a specialist health visitor identified as important to improve uptake of immunisation include drop-in clinics for specific population groups within Traveller communities, for example adolescent girls, and/or specific vaccines (e.g. HPV) and out-of-hours appointments.

• A specialist health visitor has detailed local knowledge of existing and new families within the Traveller community. This has typically resulted in a targeted and timely service and would inform identification of Travellers in their health records for improved monitoring of uptake (see intervention 2).

Mode and intensity of delivery

• Widespread support across all Traveller communities warrants national policy and guidance to achieve universal implementation and minimum standards of care.

Differences in content, and delivery, of the intervention within and across populations and settings

• Continuity of high-quality care from a trusted service provider, typically a health visitor, has been identified as one of the services considered most important and most valued by all Traveller communities.

Potential barriers to, and facilitators of, implementation within and between Traveller communities and cities

• Loss of protected funding for this post in the past.

• Additional resources are required with appropriate policy guidance to prioritise this service within the face of local budget constraints.

• This intervention to be closely linked with, and supported by, implementation of interventions 1 and 2.

Ten interventions were prioritised by particular Traveller communities and/or their service providers (see Figure 7). Based on the SEM89 these interventions fell into four levels of influence. Most were at the intrapersonal and institutional levels, reflecting a focus on providing good information on immunisation to Travellers and the key role of the NHS in improving immunisation uptake.

Detailed description of the five prioritised interventions for Travellers who are housed or settled on an authorised site

A detailed description of the five interventions that were prioritised across the Traveller communities is presented in Box 1. The nature of each intervention is analysed in accordance with the Medical Research Council’s guidance on developing and evaluating complex interventions:88 components; mode and intensity of delivery; differences in content, and delivery, within and across populations and settings; and potential barriers and facilitators. This description is based on data we collected in the interviews and workshops with Traveller and service provider participants and subsequent academic input from the IPAG (see Chapter 2, Independent project advisory group) and the research team. In presenting the detail for each intervention, we have commented on its applicability for delivery at the national and/or local level.

Strengths and limitations

To our knowledge this is the first in-depth, qualitative study in which the views on childhood and selected adult immunisation of Travellers across multiple communities and cities in the UK have been investigated. Furthermore, this was a large study, with 174 Travellers and 39 service providers interviewed and 51 Travellers and 25 service providers attending a workshop. This enabled us to identify differences and similarities in views within each community as well as draw out meaningful comparisons across the six Traveller communities, both for gender and for different vaccines (childhood and adult). A small number of studies have reported the uptake of immunisation by different groups of Travellers in the UK1,44,45,47 and Roma communities in Europe;108–110 and an extensive literature exists on Travellers’ experiences of health services more generally. 17–22,24 However, there is very little research on Travellers’ views on, and experiences of, immunisation specifically. 46,74,76,111 Moreover, these studies tend to include a small number of Travellers, often from one community, or immunisation is only part of a larger study exploring health and health care.

In reflecting on the strengths and limitations of this work and to assess our confidence in the validity and generalisability of our results (see Generalisability), we applied a comprehensive set of evaluative criteria for qualitative research112 to our methods and findings. These criteria were most relevant to the interviews conducted in phases 1 and 2, but were also applied to the phase 3 workshops when appropriate. Our detailed evaluation is presented in Appendix 12 and summarised in Table 37 (criteria 1 to 5).

For the phase 1 and 2 interviews, we achieved consistency and rigour in our data collection methods across the four cities and local research teams through the use of a data collection protocol. This was balanced with an element of flexibility to ensure that the methods, for example our initial approach and the interview topic guides, were best suited to the social circumstances of each community and acknowledged important community differences. There is likely to have been some ‘social desirability’ in participants’ accounts, and responses may have been influenced by family members present during the interviews. Indeed, a limitation of focus groups and group interviews (used in this study) is the risk that participants may not disclose any views or hide their true views, particularly if the topic is sensitive or personal. In this study our gatekeepers advised that the most sensitive topic was HPV so we ensured that the adolescent girls were not asked to discuss this in the company of men (and when possible not with their mother present). We suggest that the concern about ‘social desirability’ is counterbalanced by the frank exchanges in many interviews and the emergence of several strong themes which were similar across communities and had a range of views within them. We also worked to a data analysis protocol, followed the precise steps of the framework approach105 and drew on recognised procedures (triangulation, constant comparison, deviant case105,114) to ensure that the analysis of the interview data was carried out systematically and comprehensively. In presenting the findings we took care to ensure that we remained ‘true’ to the interview data105 by describing in detail the range of participants’ views with the extensive use of direct quotations. In terms of the phase 3 workshops, we ensured consistency through the use of a standard programme for the event and we employed established methods of intervention mapping107 and prioritisation. 101 We suggest that these research processes demonstrate a high level of scientific rigour and we are confident in the validity (authenticity105) of our study findings.

Generalisability

Generalisability in qualitative research, namely considering whether or not the findings are relevant beyond the study sample and context, is ‘important and much contested’. 105 Other terms commonly used are ‘transferability’, ‘external validity’ or ‘typicality’. 105 This is not to be confused with the quantitative notion of generalisability based on achieving samples that are statistically representative of the population from which they are derived. Several tools and structured approaches for assessing the quality of qualitative research now exist,115–118 including the one we have used for this study112 (see Table 37 and Appendix 12). These tools provide specific criteria on how to reflect on the quality of a study to then assess the generalisability of the findings. In assessing our confidence in the generalisability of the UNITING study findings, we discuss two types of generalisation proposed by Ritchie et al:105

1. representational generalisation – how far the findings from a study can be inferred to the specific population from which the sample is drawn

2. inferential generalisation – how far the findings from a study can be inferred to other settings and populations beyond the sampled one.

We did not set out to achieve theoretical generalisation (a third type of generalisation105) as this was an applied research study with a very large number of qualitative data and, as such, the findings are predominantly descriptive rather than explanatory (theory generating).

Barriers to and facilitators of immunisation uptake

The barriers and facilitators that emerged from the interviews with Travellers and service providers are discussed in terms of the two broad categories of factors that are considered to influence the uptake of childhood and adult immunisation in the general population and high-risk groups:56–60,62 acceptance of vaccines and access to health services. Together, these two categories capture the five levels of the SEM,89 the theoretical framework underpinning this study.

In discussing the barriers and facilitators, we identify where they are similar to the general population and other minority ethnic groups and issues that appear particularly relevant to Travellers, as well as to specific Traveller communities. For example, there were many common issues for the English-speaking communities, whereas the two Roma communities noticeably experienced additional barriers in terms of language and being in a new country. The Scottish Showpeople appeared most similar to the general population in their views and experiences. We also conducted an analysis of our data by gender in five out of the six communities in our study (no male London Irish Travellers were interviewed). On the whole, men and women described similar barriers to and facilitators of immunisation uptake. The few gender differences suggested by our analysis are discussed, where appropriate. In short, similar to the general population,89,119 childhood immunisation was often regarded as an area in which women took more interest, and for which they took more responsibility, than men. In addition, women were more likely than men to discuss community facilitators of immunisation (such as intergenerational change) and barriers to immunisation (such as discrimination and low levels of literacy).

Interventions to increase immunisation uptake

Recommendations for research

1. Mixed-methods research to explore the challenges and opportunities of ethnic identification of Travellers in primary care and maternity health services, including:

   1. exploratory qualitative research with health professionals and Travellers (men and women across generations) to explore their views on their barriers to and facilitators of recording Traveller ethnicity

   2. quantitative analysis of immunisation uptake by ethnicity (if recording of Traveller ethnicity improves to a level to enable this) to explore inequality in uptake by ethnic group (and aid further targeting of services).

2. Evaluation of the implementation of a national policy plan (and accompanying practice guidance plan) to promote uptake of immunisation among culturally diverse Traveller communities in the UK.

3. Methodological research to identify appropriate methods to capture the views and experiences of immunisation of roadside Travellers and those living on unauthorised encampments (men and women across generations).

4. Informed by (3), exploratory qualitative research with roadside Travellers and those living on unauthorised encampments to identify acceptable and feasible interventions to improve uptake of immunisation, including views on:

   1. – flexible delivery of immunisation services

   2. – improving the system of temporary registration with GP practices.

5. Exploratory qualitative research with Travellers to explore their views on the barriers to and facilitators of the uptake of vaccines newly introduced to the routine schedule, such as rotavirus and meningitis B.

Implications for policy and practice

Evidence from this study points to ways to promote uptake of immunisation among English Gypsy, Irish Traveller, Eastern European Roma and Showpeople Traveller communities in the UK.

1. The development and implementation of a national policy plan (and accompanying practice guidance plan) which comprises:

   1. cultural competence training for health professionals and frontline staff

   2. identification of Travellers in health records to tailor support and monitor uptake

   3. provision of a named person in GP practices to provide a consistently respectful and supportive frontline service

   4. flexible and diverse systems for booking appointments and follow-up reminders and recalls

   5. protected funding for a designated health visitor specialising in Traveller health including immunisation.

2. The development of national targets to support the effective implementation of a national policy plan (and accompanying practice guidance plan), including:

   1. national target for GP practices for the collection of immunisation status data for local Traveller communities within routine Quality and Outcomes framework data collection requirements

   2. national target for GP practices to achieve an agreed per cent coverage of full immunisation uptake among local Traveller communities.

3. The integration of a national policy plan (and accompanying practice guidance plan) into key guidance and policy documents, including:

   1. NICE guidance for reducing differences in the uptake of immunisations among children and young people48

   2. the Department of Health’s Healthy Child Programme171

   3. the Scottish Government’s Healthy Child Programme172

   4. NHS England’s National Health Visitor Core Service Specification173

   5. the Scottish Government’s Universal Health Visiting Pathway in Scotland174

   6. NHS England’s Public Health Section 7a Commissioning Intentions. 175

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 (chairperson), 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.

• Sarah Bridgman, North Somerset Community Partnership Community Interest Company.

• Gill Francis, North East London Foundation Trust.

• Bridget Gallagher, NHS Greater Glasgow and Clyde.

• Jacob Jablonowski, formerly Wellspring Healthy Living Centre, Bristol.

• Sheila Lally, North Bristol NHS Trust.

• Anne Marie McCulloch, NHS Greater Glasgow and Clyde.

• Luiza McRae, Freelance Interpreter.

• Gillian Thomson, NHS Greater Glasgow and Clyde.

• Linda Vousden, North Bristol NHS Trust.

• Lewisham Irish Community Centre.

• Local Planning Group, Glasgow.

• London Gypsy and Traveller Unit.

• Southwark Traveller Action Group.

• York Travellers Trust.

Contributions of authors

Dr Cath Jackson (Senior Research Fellow, Public Health) was the principal investigator. She conceived, designed and led the study, contributed to data collection in York and to data analysis and prepared the final report.

Ms Lisa Dyson (Research Fellow, Maternal and Child Health) contributed to study design, data collection in York and data analysis and drafted sections of the final report.

Dr Helen Bedford (Senior Lecturer, Children’s Health) contributed to study conception and design, led the data collection in London and contributed to the preparation of the final report.

Professor Francine M Cheater (Professor, Public Health and Implementation Science) contributed to study conception and design and to data analysis and drafted sections of the final report.

Dr Louise Condon (Associate Professor, Nursing) contributed to study conception and design, co-led the data collection in Bristol and drafted sections of the final report.

Ms Annie Crocker (Member of English Gypsy community in Bristol) contributed to study conception and design, facilitated recruitment in Bristol and contributed to the preparation of the final report.

Dr Carol Emslie (Reader, Public Health) contributed to study conception and design, data collection and data analysis and drafted sections of the final report.

Dr Lana Ireland (Researcher, Psychology) contributed to data collection in Glasgow and to the preparation of the final report.

Ms Philippa Kemsley (Research Health Visitor) facilitated recruitment and contributed to data collection in London and to the preparation of the final report.

Dr Susan Kerr (Reader, Public Health) contributed to study conception and design, led the data collection in Glasgow and contributed to the preparation of the final report.

Dr Helen J Lewis (Research Fellow, Mental Health) contributed to study conception and design, to data collection in York and to the preparation of the final report.

Dr Julie Mytton (Associate Professor, Child Health) contributed to study conception and design, co-led the data collection in Bristol and drafted sections of the final report.

Ms Karen Overend (Research Fellow, Mental Health) contributed to data analysis and drafted sections of the final report.

Professor Sarah Redsell (Professor, Public Health) contributed to study conception and design and to data analysis and drafted sections of the final report.

Miss Zoe Richardson (Trial Support Officer) contributed to data analysis and drafted sections of the final report.

Miss Christine Shepherd (Chief Officer, Gypsy Travellers) contributed to study conception and design, facilitated recruitment in York and contributed to the preparation of the final report.

Mrs Lesley Smith (Member of English Gypsy Traveller community in York) contributed to study conception and design, facilitated recruitment in York and contributed to the preparation of the final report.

Publication

Jackson C, Bedford H, Condon L, Crocker A, Emslie C, Dyson L, et al. UNderstanding uptake of Immunisations in TravellIng aNd Gypsy communities (UNITING): protocol for an exploratory, qualitative study. BMJ Open 2015;5:e008564.

Data sharing statement

Data can be obtained from the corresponding author.

Disclaimers

This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HTA programme or the Department of Health. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the HTA programme or the Department of Health.

Leaflet for adults

We would like to invite you to take part in our research project.

This leaflet gives information about the project so you can decide if you want to take part.

If you have any questions please ask the person who gave you this leaflet or contact …………………… who is leading the study in York.

This research project is being organised by:

Why have I been asked to take part?

We are talking to Gypsies, Roma and Travellers in York, Bristol, Glasgow and London. We would like to talk to young people, parents and grandparents.

What will I have to do?

If you want to take part we will arrange a convenient time and place for us to talk. We can talk to you alone or with others in a group, whichever you prefer. We would like to hear your stories about vaccinations for you, your children and your grandchildren. We would also like to hear your ideas about how we can make it easier for Gypsies, Roma and Travellers to have vaccinations if they want to. We will ask you if it is OK for us to record what you say to us. If you do not want to be recorded, we can take notes instead. We will type up the recording or notes and keep them in a locked filing cupboard. They will not have your name on.

What do I do now?

If you want to take part in the research project you can tell the person who gave you this leaflet. If you want to you can phone or email our researcher: …………………………………………………………………

If you are unhappy with the project you can contact (name of PI) who is leading it. Tel. xx Email. xx.

Participant Information Sheet for Commissioners and Providers of Health Services

We would like to invite you to take part in our study. Before you decide we will explain what the study is about and what it involves. Please read this information. If you have any questions please ask us. Our contact details are at the end of the information sheet.

Who is organising and funding this study?

This study is being organised by researchers at the University of York and York Travellers Trust. It is being led by (name of PI) at the University of York. You can contact her if you have any concerns about the study.

Email xx. Tel. xx.

The research has been funded by the Department of Health, National Institute for Health Research Health Technology Assessment programme.

Thank you for reading this information.

This study is organised by:

Leaflet about a meeting

We would like to invite you to come to a meeting to talk about how we can make getting vaccinations as easy as possible for Gypsies, Roma and Travellers.

This leaflet gives information about the meeting so you can decide if you want to come.

If you have any questions please ask the person who gave you this leaflet or contact Lisa who is running the meeting in York.

This research project is being organised by:

Why have I been asked to take part?

We want to talk to Gypsies, Roma and Travellers as well as doctors, health visitors and others who provide vaccinations in York.

What will I have to do?

We would like you to come to a meeting on xx to xx at xx. At the meeting there will be about 20 people: some from the local Gypsy, Roma and Traveller community; as well as doctors, health visitors and others who provide vaccinations in York.

There will be coffee and teas when you arrive. Then we will go into small groups to talk about ideas to make getting vaccinations as easy as possible. People from the Gypsy, Roma and Traveller community will be in one group. The doctors and health visitors will be in a different group. After that both groups will come together to share their ideas and we will have lunch.

Consent Form for Adults

The researcher will read out all of the information on this form to you. Please put your initials or a mark in each box if you agree with the information.

All the information on this form will be kept confidential which means it will not be given to anyone outside the UNITING team.

Please sign your name or place a mark in the box *.

[One copy to be kept by participant, one copy to be kept by the researcher]

Consent Form for Commissioners and Providers of Health and Community Services

Please initial each of the boxes below, then sign and date this form. The information in this form will be kept confidential and will not be given to anyone outside the UNITING study team.

Please sign your name in the box *.

[One copy to be kept by participant, one copy to be kept by the researcher]

Story about jabs

Perhaps you could tell us a story about one of your experiences to do with jabs, anything at all that sticks in your mind.

Interviewer to note what term the participant uses to describe immunisation.

Interviewer to note key issues emerging from story and follow those up using questions and prompts below to ensure all topics are covered (rather than going through the questions below).

What you think about jabs

Can you tell me who you think of as your community?

Jabs for children

• Can I just check, does your daughter go to secondary school?

• If not, when did she stop going to school?

• Can you tell me a bit about why that is – who makes that decision?

• What does your daughter do at home? (home schooled, work, etc.)

I would like to now ask you about the jabs your (grand) child/children may have been offered.

Jabs for adults

I would like to move on now to ask you about 2 jabs you may have been offered as an adult. Let’s start with flu.

Ideas for increasing take up of immunisations

The last thing I’d like to do is ask you about is your ideas to increase take up of jabs (if you would like to have them), both for your (grand) children and for you.

End interview

Refer to ‘Protocol for Data Collection’ - Interviews.

Introductory question

Attitudes

Service provision

End interview

Collect participant background information.

Consent Form for a Meeting for Travellers

The researcher will read out all of the information on this form to you. Please put your initials or a mark in each box if you agree with the information.

All the information on this form will be kept confidential which means it will not be given to anyone outside of the UNITING team.

Please sign your name or place a mark in the box *.

[One copy to be kept by participant, one copy to be kept by the researcher]

Consent Form for a Workshop for Commissioners and Providers of Health and Community Services

Please initial each of the boxes below, then sign and date this form. The information in this form will be kept confidential and will not be given to anyone outside of the UNITING study team.

Please sign your name in the box *.

[One copy to be kept by participant, one copy to be kept by the researcher]

Theme 1: immunisation and health status

Theme 2: indirect positive influences on immunisation attitudes/behaviour

Theme 3: indirect negative influences on immunisation attitudes/behaviour

Theme 4: knowledge of immunisation

Theme 5: reason(s) for general immunisation behaviour

Theme 6: reason(s) for behaviour for a specific immunisation (if different from general)

Theme 7: reason(s) for immunisation beliefs or behaviour for a family member

Theme 8: prompt for attending for immunisation

Theme 9: family’s, friends’ and others’ immunisation attitudes and behaviour

Theme 10: Barriers to immunisation(s)

Theme 11: ideas for interventions – information and culture

Theme 12: ideas for interventions – access to and quality of health care services

Theme 1: role

Theme 2: how work links with other organisations/individuals and national/local strategies

Theme 3: previous/current immunisation/Traveller initiatives/programmes and their impact

Theme 4: perception of level of uptake of immunisations in community (general and specific)

Theme 5: attitudes/behaviours towards Travellers they see health professionals/services have/do

Theme 6: community barriers to immunisation (general)

Theme 7: community barriers to specific immunisations (if different)

Theme 8: community facilitators of immunisation (general)

Theme 9: community facilitators of specific immunisations (if different)

Theme 10: service delivery barriers to immunisation

Theme 11: service delivery facilitators of immunisation

Theme 12: record keeping and monitoring

Theme 13: ideas for interventions – information and culture

Theme 14: ideas for interventions – service delivery

Theme 15: ideas for interventions – commissioning and higher-level policy/development

Summary Report for Service Providers in York

Thank you

We would like to thank all study participants, including York Service Providers for sharing their views and experiences.

This study was organised by:

It was funded by: