gypsy travellers and friends

Gypsy and Traveler Culture in America

Gypsy and Traveler Culture, History and Genealogy in America

Are you a Gypsy, Traveler or Roader, or have some ancestry in any one of such groups? This site is dedicated to you; to help you become more aware of your own rich heritage, to help preserve your traditions, language and knowledge of where you came from and who you are.

The identities of Traveling People are everywhere threatened by the flood of misinformation that is being disseminated on the web and through the popular media. This site pledges to correct such misinformation and to present an accurate and unbiased view of traveling life as it has unfolded since the your ancestors first set foot in the New World.

Preservation of your ethnic heritage and pride in your own ethnic identity are some of the most valuable assets that any parents can leave to their children and grandchildren. To be of Gypsy or Traveler background is something special, something to be treasured along with the language, customs, and cultural values embodied in a unique way of life.

If you want to learn more about your family and your ethnic group, whether you be of Cale, Hungarian-Slovak, Ludar, Rom, Romnichel or Sinti Gypsy or American (Roader), English, German, Irish or Scotch Traveler background we will provide you with an interactive forum for asking questions, finding lost relatives, guidance to accurate sources, exchanging information as well as just keeping in touch with your own kind.

To get started just send a note to ASK MATT specifying what kind of Gypsy you are and in which family background you are interested.

The foundation on which this site is built is a rich storehouse of data of every imaginable kind: documentary sources, oral histories and observations of traveling life collected in over 35 years of unpaid research by Matt and Sheila Salo. The Salos have dedicated their lives to providing a true history of traveling life in America and to dispelling the myths that are currently being spread on the web and other media.

This endeavor is based on the premise that every kind of Gypsy and Traveler has a right to his or her own identity, whatever it might be. Each of you has a unique heritage that your ancestors nurtured over centuries of hardship and persecution. Now those rich and unique identities are in danger of being lost as more and more people lose the sense of who they are; customs, language and traditional life patterns are not being passed on; some people are even becoming ashamed of their Gypsy or Traveler identities.

Again, email any specific inquiries into American Gypsy or Traveler history, culture and genealogy to Matt T. Salo at ASK MATT .

Forthcoming: This history and culture page under preparation will be divided into subject areas that you can access separately depending on your interests. If you seek information sources, have specific questions, or want to broaden your horizons by learning about other groups, we will provide the best, most accurate information available. You will not be fed speculations about Melungeons, hordes of Gypsies in Colonial America, or Gypsies and Travelers as hapless victims or criminal castes - instead all our information will be based on actual verified data that truly represents the experience of your people in America since your ancestors first arrived here.

Culture and language are not easily lost and, unless you are among those few unfortunate individuals whose parents or grandparents misguidedly tried to separate themselves and their families from their roots, you should easily be able to pick up traits of language and culture that indicate your origins. We will begin with a brief overview of the different groups to orient those among you who are not quite sure of where they belong. More detailed descriptions will follow.

Gypsy and Traveler Groups in the United States

Cale: Spanish Gypsies, or Gitanos, are found primarily in the metropolitan centers of the East and West coasts. A small community of only a few families.

English Travelers: Fairly amorphous group, possibly formed along same lines as Roaders (see below), but taking shape already in England before their emigration to the US starting in early 1880s. Associate mainly with Romnichels. Boundaries and numbers uncertain.

Hungarian-Slovak: Mainly sedentary Gypsies found primarily in the industrial cities of northern U.S. Number in few thousands. Noted for playing "Gypsy music" in cafes, night clubs and restaurants.

Irish Travelers: Peripatetic group that is ethnically Irish and does not identify itself as "Gypsy," although sometimes called "Irish Gypsies." Widely scattered, but somewhat concentrated in the southern states. Estimates vary but about 10,000 should be close to the actual numbers.

Ludar: Gypsies from the Banat area, also called Rumanian Gypsies. Arrived after 1880. Have about the same number of families as the Rom, but actual numbers are unknown.

Roaders or Roadies: Native born Americans who have led a traveling life similar to that of the Gypsies and Travelers, but who were not originally descended from those groups. Numbers unknown as not all families studied.

Rom: Gypsies of East European origin who arrived after 1880. Mostly urban, they are scattered across the entire country. One of the larger groups in the US, possibly in the 55-60,000 range.

Romnichels: English Gypsies who arrived beginning in 1850. Scattered across the entire country, but tend to be somewhat more rural than the other Gypsy groups. Many families are now on their way to being assimilated, hence estimation of numbers depends on criteria used.

Scottish Travelers: Ethnically Scottish, but separated for centuries from mainstream society in Scotland where they were known as Tinkers. Some came to Canada after 1850 and to the United States in appreciable numbers after 1880. Over 100 distinct clans have been identified but total numbers not known.

Sinti: Little studied early group of German Gypsies in the United States consisting of few families heavily assimilated with both non-Gypsy and Romnichel populations. No figures are available.

Yenisch: Mostly assimilated group of ethnic Germans, misidentified as Gypsies, who formed an occupational caste of basket makers and founded an entire community in Pennsylvania after their immigration starting 1840. Because of assimilation current numbers are impossible to determine.

This inventory leaves out several Gypsy groups that have immigrated since 1970 due to the unrest and renewed persecution in Eastern Europe after the collapse of Communism. They have come from Bulgaria, Czechoslovakia, Poland, Romania, the former Yugoslavian area, and possibly other countries. They number in few thousands by now, but their numbers are likely to increase.

Copyright @ 2002 Matt T. Salo

Health Inequalities in the Gypsy, Roma and Traveller Community – How we are making change happen?

Posted on 24 June 2022 by Kelly Muir

June is Gypsy, Roma, Traveller History month (GRTHM) - an opportunity to raise awareness of and celebrate Gypsy, Roma and Traveller history, culture and heritage. Kelly Muir, Senior Health Improvement Officer with the Inclusion Health team, explains what Public Health Scotland (PHS) and partners are doing to improve Gypsy/Travellers’ lives.  

Scottish Government analysis of the 2011 Census data showed that when compared to the ‘White: Scottish’ group, Gypsy/Travellers were twice as likely to have a long-term health problem and were three times more likely to report ‘bad’ or ‘very bad’ health.  In fact, the analysis showed that on every indicator of what is required to live a happy, productive and fulfilled life, Gypsy/Travellers were worse off than any other community in Scotland. 1

Much work has happened since the 2011 census to address the significant inequalities experienced by Gypsy/Travellers in Scotland. The Scottish Government Race Equality Framework 2016-2030 commits to ensuring equality of opportunity for all Scotland’s Gypsy/Travellers. The joint Scottish Government and COSLA national action plan, Improving the Lives of Gypsy/Travellers in Scotland 2019-2021 (external website) , says that improving the lives of Gypsy/Travellers is crucial ‘if we are to tackle deep-rooted inequalities and deliver a fairer Scotland’.

Some of the inequalities experienced by the Gypsy/Traveller community are:

• A higher suicide rate than the general population - six times higher for Gypsy/Traveller women and almost seven times higher for Gypsy/Traveller men. 2
• Poorer mental health - often linked to poverty, social exclusion, stigma and hate crime. In a recent study one Gypsy/Traveller described experiences of hate crime as ‘as regular as rain’. 3
• Barriers when accessing health services - These included difficulties registering with GPs, poor staff attitudes and lack of trust of services because of previous experiences. 4
• Lower uptake of preventative health services - Including antenatal and postnatal care, childhood development assessments and dental services, and missed routine appointments because of lack of postal address. 5
• Living in unsafe environments - Little or no access to basic amenities due to lack of adequate site provision can often lead to families living next to busy roads or waste ground. 6

PHS has been working with partners for several years to help reduce inequalities experienced by the Gypsy/Traveller community. Thanks to the concerted effort by national and local partners to work innovatively and collaboratively, we are starting to see real change. 

We’ve worked with Scottish Government and COSLA to shape and inform the national action plan, ensuring improving health outcomes is a key component, and working with partners on actions within the associated health and wellbeing delivery plan.

Improving Health Outcomes – on the ground

We’ve contributed to proposals that have seen pilot projects set up in local areas.

Community Health Matters (external website)  is a project delivered by MECOPP, which has seen local Gypsy/Traveller women trained as Community Health Workers (CHW). The aim being to work with people in their community to understand and address health and wellbeing issues. It has been up and running for just over six months, with five CHWs in place and is making a difference.  They provide support including: assistance with GP registration, accompanying people to healthcare and covid vaccination appointments, undertaking Mental Health First Aid training and raising awareness of services available to those with mental health conditions. They also identify and act on cross cutting issues such as accommodation and education to improve overall wellbeing. The project will be evaluated later in the year, but it is already showing the impact building trusted relationships can have on supporting people to access services.

Mums Matter in Fife (external website) (PDF) aimed to make maternity, health visiting and income maximisation services more accessible to Gypsy/Traveller women. An early key achievement of the Mums Matter project was that it identified that Badgernet, the national recording system for maternity care, did not include an identification code for Gypsy/Traveller ethnicity. This was raised at a national level and an identification code for Gypsy/Traveller ethnicity was added to the system. 

Access to Healthcare – GP Registration cards  which aim to make registering with a GP easier have been developed in partnership. Gypsy/Travellers have regularly reported difficulty when registering with a GP, often because they do not have a permanent address or identification, neither of which is needed to register. The cards inform patients and front-line staff of the right everyone has to primary care and have proved a popular aide.

A National Approach

Probably the most valuable achievement is the cross-sector relationships established and built between Scottish Government, COSLA, local health board and HSCP colleagues, and key third sector partners. PHS established and manages the NHS and HSCP Gypsy/Traveller Forum, which brings people working with Gypsy/Travellers in local areas together to share their learning and experiences. It also enables them to influence national policy. This joined up approach to the work has provided opportunities for collaboration such as:

• Contributing to the Framework for Local Authorities and partners on keeping Gypsy/Travellers safe during the Covid-19 pandemic.
• Developing an e-learning module for NHS and health and social care staff to raise awareness of Gypsy/Traveller culture, lifestyle and the inequalities they experience. 
• Providing advice on the aspects of place that support health and wellbeing to inform the development of a design guide for Gypsy/Traveller sites.

Partnership working with local areas and third sector organisations allows us to connect with and hear directly from local Gypsy/Traveller communities, which is essential when we’re planning and redesigning services.    

We know there is still a way to go. Analysis of the 2022 census will give us some insight in to whether things have improved over the last 10 years for Scotland’s Gypsy/Travellers. In the meantime, PHS will continue to work with partners on improving access to services, particularly in primary care, supporting Gypsy/Travellers to understand their rights to healthcare, raising awareness of the inequalities experienced by Gypsy/Travellers and highlighting where change is needed.  

If you’d like to learn more about Gypsy, Roma, Traveller History month visit Gypsy Roma Traveller History Month website (external website) .

• Scottish Government, Gypsy/Travellers in Scotland: A Comprehensive Analysis of the 2011 Census , 2015 (PDF)
• Friends, Families and Travellers, A research paper: Suicide prevention in Gypsy and Traveller communities in England , 2020 (PDF)
• Greenfields, M & Rogers, C, Hate: ‘As regular as rain’, A pilot research project into the psychological effects of hate crime on Gypsy, Traveller and Roma (GTR) communities , 2020 (PDF)
• Equality and Human Rights Commission , Inequalities experienced by Gypsy Traveller communities , 2009
• McFadden et al, Enhancing Gypsy/Travellers’ trust: using maternity and early years’ health services and dental health services as exemplars of mainstream service provision , 2018
• Greenfields, M & Brindley, M, Impact of insecure accommodation and the living environment on Gypsies’ and Travellers’ health, 2016 (PDF)

Photo credit: Susanna Hotham for Romano Lav.

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• Study protocol
• Open access
• Published: 14 November 2016

Community engagement to enhance trust between Gypsy/Travellers, and maternity, early years’ and child dental health services: protocol for a multi-method exploratory study

• Alison McFadden   ORCID: orcid.org/0000-0002-5164-2025 1 ,
• Karl Atkin 2 ,
• Kerry Bell 2 ,
• Nicola Innes 3 ,
• Cath Jackson 2 ,
• Helen Jones 4 ,
• Steve MacGillivray 1 &
• Lindsay Siebelt 1  

International Journal for Equity in Health volume  15 , Article number:  183 ( 2016 ) Cite this article

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Gypsy/Travellers have poor health and experience discrimination alongside structural and cultural barriers when accessing health services and consequently may mistrust those services. Our study aims to investigate which approaches to community engagement are most likely to be effective at enhancing trust between Gypsy/Travellers and mainstream health services.

This multi-method 30-month study, commenced in June 2015, and comprises four stages.

Three related reviews: a) systematic review of Gypsy/Travellers’ access to health services; b) systematic review of reviews of how trust has been conceptualised within healthcare; c) realist synthesis of community engagement approaches to enhance trust and increase Gypsy/Travellers’ participation in health services. The reviews will consider any economic literature;

Online consultation with health and social care practitioners, and civil society organisations on existing engagement activities, including perceptions of barriers and good practice;

Four in-depth case studies of different Gypsy/Traveller communities, focusing on maternity, early years and child dental health services. The case studies include the views of 32–48 mothers of pre-school children, 32–40 healthcare providers and 8–12 informants from third sector organisations.

Two stakeholder workshops exploring whether policy options are realistic, sustainable and replicable.

Case study data will be analysed thematically informed by the evaluative framework derived from the realist synthesis in stage one.

The main outputs will be: a) an evaluative framework of Gypsy/Travellers’ engagement with health services; b) recommendations for policy and practice; c) evidence on which to base future implementation strategies including estimation of costs.

Our novel multi-method study seeks to provide recommendations for policy and practice that have potential to improve uptake and delivery of health services, and to reduce lifetime health inequalities for Gypsy/Travellers. The findings may have wider resonance for other marginalised populations. Strengths and limitations of the study are discussed.

Trial registration

Prospero registration for literature reviews: CRD42015021955 and CRD42015021950

UKCRN reference: 20036

In 2008, the World Health Organisation Commission on Social Determinants of Health [ 1 ] called for ‘closing of the gap’ in health inequalities within a generation. Reducing health inequalities has been a priority for successive UK governments [ 2 ]. The needs of the most marginalised groups have however, been neglected. Gypsies and Travellers are one socially excluded group where evidence for improving health is weakest [ 3 ]. It is estimated that there are 150,000–300,000 Gypsy/Travellers in the UK [ 4 ], this however is likely to be an underestimate. Due to widespread stigma and discrimination, many Gypsy/Travellers do not disclose their identity [ 5 ]. This paper provides an overview of a multi- component study that aims to strengthen the evidence regarding how to improve uptake and delivery of health services and thereby reduce health inequalities for Gypsy/Travellers.

We use the term ‘Gypsy/Travellers’ to include all those with a cultural tradition of, and commitment to nomadism, including those who live permanently or temporarily in settled housing. This broad definition includes individuals from different socio-cultural backgrounds including Romany (English) Gypsies, Irish Travellers, Scottish Gypsy/Travellers and Eastern European Roma communities. However, there are contested definitions of Gypsy/Travellers reflecting complex cultural and/or linguistic differences between communities [ 6 ]. Therefore there are likely to be different health needs and experiences of health care between and within diverse Gypsy/Traveller communities [ 7 ].

Although Gypsy/Traveller communities are diverse, and robust evidence of health needs is lacking due to unknown population size and lack of systematic monitoring [ 8 , 9 ], there is consensus that Gypsy/Travellers in the UK have poorer health and lower life expectancy than the general population and other disadvantaged groups [ 7 , 8 , 10 – 15 ]. This includes increased maternal and child mortality [ 8 , 13 , 16 ], and in children, high rates of accidental injury, infections and accident and emergency department attendance [ 11 , 17 ]. Studies have found low uptake of preventative health services including childhood immunisations [ 18 – 21 ], significantly increasing risk of preventable disease [ 22 , 23 ]. Gypsy/Travellers have poor dental health with high unmet need for dental care [ 24 , 25 ].

Some of the reasons why Gypsy/Travellers are vulnerable to poor health outcomes, even when compared to other disadvantaged groups include poor living conditions, high rates of homelessness, low educational achievement, social exclusion and widespread prejudice and discrimination [ 26 ]. Gypsy/Travellers also face many barriers to accessing healthcare. For some, a mobile lifestyle is key [ 16 ], however, poor access is also experienced by settled Gypsy/Travellers. This is underpinned by complex factors including stigmatisation and lack of understanding by healthcare staff [ 10 , 12 , 27 ]. Reported cultural barriers include normalisation of ill-health and pride in self-reliance [ 28 ]. However, it is unclear how these interact with social exclusion and poverty [ 29 ].

These multiple factors alongside poor quality care that does not meet healthcare needs may lead to low expectations and mistrust of health services and healthcare personnel [ 27 , 30 ]. Trust in services and personnel is associated with increased utilisation of healthcare, and improved health behaviours and quality of care [ 31 – 33 ]. Community engagement strategies have the potential to enhance trust and ensure services are tailored to the needs of specific populations [ 34 – 36 ]. “Community engagement” is one of several overlapping terms (others include “community involvement”, “community participation”, and “community development”) used to describe activities that are aimed at enabling communities to participate in decisions that affect their lives and improve their health and wellbeing, including planning, design, delivery and evaluation of health services [ 34 – 36 ].

Aims and objectives

Our research investigates which approaches to community engagement are likely to enhance trust between Gypsy/Travellers and mainstream health services. The focus is maternity services, early years’ health services and child dental health services. The objectives are to:

describe activities and methods used to engage Gypsy/Travellers in health services and to assess the extent to which they focus on developing trust;

investigate the extent to which different engagement activities used by health services enhance trust and increase uptake of maternity services, early years’ services and child dental health services by Gypsy/Travellers;

examine the knowledge, attitudes/beliefs and experiences of Gypsy/Travellers of maternity services, early years’ services and child dental health services;

identify different approaches to enhancing Gypsy/Travellers’ trust in maternity services, early years’ services and child dental health services and explore the implications for policy and practice;

estimate the potential implementation costs of different approaches to enhancing Gypsy/Travellers’ trust in maternity services, early years’ services and child dental health services; and

explore whether community engagement approaches that work to enhance Gypsy/Travellers’ trust in maternity services, early years’ services and child dental health services are potentially applicable to other health services/vulnerable communities.

Study design and overview

This multi-method 30-month study (June 2015 to November 2017) comprises four interlinked stages. See Fig.  1 for an overview.

Study flow chart

The study team are being advised by two advisory groups; a Stakeholder Advisory Group comprising health professionals, policy advisors and academics, and a User Advisory Group, hosted by Leeds Gypsy and Traveller Exchange (Leeds GATE), comprising women representing Romany Gypsy, Irish Traveller and Eastern European Roma communities.

Stage one: literature reviews

Review one is a systematic review of all available primary empirical literature on how, why and where Gypsy/Travellers seek help from and engage with healthcare services.

In May 2015, we searched 21 online databases: MEDLINE (via OVID), Embase (via OVID), CINAHL (via EBSCO), Cochrane Database of Systematic Review, Database of Abstracts of Reviews of Effects, Health Technology Assessment database, CENTRAL, Social Science Citation Index (via Web of Knowledge), PsycINFO (via OVID), HMIC (via OVID), ASSIA (via Proquest), Social Policy and Practice (via OVID), Bibliomap (via the EPPI-Centre databases), DoPHER (via the EPPI-Centre databases), TRoPHI (via the EPPI-Centre databases), the Campbell Library, Social Care Online and the British Nursing Index (via Proquest), Research Councils UK – Gateway to Research, OAIster and OpenGrey. In addition, to identify work-in-progress and unpublished studies, a focused Google search was conducted. Reference lists of relevant literature reviews were examined to locate further studies. Search terms, developed with an Information Specialist, combined thesaurus and free-text terms. The search structure was (Gypsy/Traveller communities) AND (general healthcare services OR maternal and child healthcare services OR child dental health care services OR community engagement interventions).

Eligibility criteria

Publications were included if they reported methods and findings of a primary study, focused on Gypsy/Travellers, included data that illuminated how, why and where Gypsy/Travellers engage with health care services and were published in English after the year 2000. All study designs were included.

Selection of studies

Title and abstracts were screened independently by two reviewers and discrepancies discussed with a third reviewer. Full texts of publications appearing to meet the inclusion criteria were assessed independently by two reviewers and discrepancies discussed with a third reviewer.

Data extraction and synthesis

For each study meeting the eligibility criteria, data were extracted by one reviewer and checked by a second reviewer regarding methods, aims and specific findings related to the review question. A detailed narrative of the findings will be reported.

An evidence matrix indicating key findings and the robustness of methodology, accompanied by a narrative synthesis is the key output of this review. Review one also provides a sampling frame to feed relevant studies into the realist synthesis of community engagement approaches [ 37 ]. Finally, we also conducted an appraisal of the economics literature applying focus to any economic evaluations or discussions of cost associated with engagement programmes. Economics literature was primarily identified via the first search though an additional search was also undertaken using NHS EED, the only remaining database for economic evaluations (published until 2014). Review one is in the write-up phase.

Review two is a systematic review of secondary (review) literature to examine how ‘trust’ has been conceptualised and theorised in any healthcare setting. Trust is a complex term, frequently used but rarely defined. We are particularly interested in describing frameworks/models that may be relevant in explaining the relationship between vulnerable communities and mainstream health and social care services. Trust is however, a challenging term to search for (a recently updated Cochrane review on interventions to enhance trust retrieved 14057 records for initial screening [ 38 ]). Since we were interested in understanding and describing the concept of trust within a health care context generally, we focused on secondary literature.

We searched 15 online databases in May 2015: MEDLINE (via OVID), Embase (via OVID), CINAHL (via EBSCO), Cochrane Database of Systematic Review, Database of Abstracts of Reviews of Effects, Health Technology Assessment database, Social Science Citation Index (via Web of Knowledge), PsycINFO (via OVID), HMIC (via OVID), ASSIA (via Proquest), Social Policy and Practice (via OVID), Bibliomap (via the EPPI-Centre databases), DoPHER (via the EPPI-Centre databases), TRoPHI (via the EPPI-Centre databases), the Campbell Library. The search structure was: “trust” synonyms AND “systematic review” synonyms.

Systematic and non-systematic reviews were included if their primary focus was describing or exploring the concept of trust within a health care context, and were published in English after the year 2000

Study selection

Data were extracted for each eligible study by one reviewer and checked by a second reviewer regarding: methods; review aims; and key findings specifically related to understanding, describing or exploring trust. A detailed narrative synthesis of the findings is currently under construction.

Review three is a realist synthesis of community engagement approaches to enhance trust and increase Gypsy/Travellers’ participation in health services. Four hypotheses, derived from published literature, were developed to provide initial direction for the review:

Community engagement is an effective and cost-effective strategy for enhancing the confidence and trust of Gypsy/Travellers in mainstream services [ 34 ];

Approaches to community engagement that work to enhance trust and increase uptake of services with some participants may not work with Gypsy/Travellers because of the longstanding experience of social exclusion and discrimination, low education and literacy levels and mistrust of authority [ 39 ];

Successful community engagement will be underpinned by genuine involvement of community members (i.e. not tokenistic), honest appraisal of what can be achieved (not raising expectations that cannot be met) and continuity of trusted personnel [ 40 ].

Community engagement between Gypsy/Travellers and mainstream health services can be facilitated effectively by civil society Gypsy/Traveller organisations [ 8 , 39 ].

Realist synthesis is appropriate for understanding complex interventions, in this case the interaction between trust and community engagement. Realist reviews focus on developing theories of what works for whom and in what circumstances thereby accounting for context, mechanisms and outcomes in the process of systematically synthesising relevant literature [ 41 ]. Our realist synthesis will draw on data derived from reviews one and two, but will also include purposive additional searching [ 37 ] for literature that focuses on engagement approaches with Gypsies, Travellers and Roma. The output of the realist synthesis will be an evaluative framework for explaining and understanding the complex and multi-faceted nature of engagement with health services. We plan to involve the study Stakeholder Advisory group in further stages of the review process. Review three is underway.

Stage two: online consultation

A semi-structured, web-based questionnaire will be purpose designed to elicit views on how to enhance trust in mainstream services; the range of activities/methods used by maternity, early years’ and child dental health services to engage Gypsy/Travellers and any associated costs; perceptions of the success of different approaches to developing trust; and barriers to, and suggested strategies for, enhancing trust, including examples of good practice. The questions will be based on the aims of the study, findings of the literature reviews, and the views of the Stakeholder Advisory Group. The consultation will be delivered using the Bristol Online Survey tool [ 42 ], and will be disseminated by e-mail. We aim to include the views of three main groups, from across the UK, through purposive sampling:

Individuals working in civil society organisations who represent or advocate for Gypsy/Traveller communities. These include UK-wide organisations such as Friends, Family and Travellers; National Federation of Gypsy Liaison Groups; and local/regional groups such as Traveller Movement (London); Derbyshire Gypsy Liaison Groups; One voice for Travellers (Cambridgeshire); Roma Support Group (London); Romani Arts Company (Wales) An munia Tober (Northern Ireland) and Article 12 Young Gypsy Lives (Scotland). We will also include organisations who represent/advocate for users of maternity users (nct – formerly known as the National Childbirth Trust), and children (Save the Children UK; Children’s Society). We were unable to identify any civil society organisations focusing on child dental health.

Health and social care practitioners delivering maternity, early years’ and child dental health services (e.g. midwives, health visitors, general practitioners, and community dentists, who work with Gypsy/Travellers communities). We aim to include healthcare practitioners who have a specialist role regarding service provision for Gypsy/Travellers, and those who provide care for Gypsy/Travellers as part of mainstream services. We will reach these practitioners through professional organisations and networks such as Midwifery Supervisors network; Infant Feeding Leads network; Health Visitors Institute; Royal College of General Practitioners; Royal College of Paediatrics and Child Health; Faculty of Public Health; British Dental Association and British Society of Paediatric Dentistry.

Local policymakers and health and social care service commissioners (e.g. Directors of Public Health and Dental Public Health, health improvement specialists, health inequality teams, clinical commissioning groups and Local Authorities).

Analysis of the online consultation will include: proportions of respondents who agree/disagree with evidence–derived statements; and thematic analysis of free text questions including exploration of similarities and differences between different stakeholders.

The online consultation findings will: a) inform the selection of case studies, i.e. if a successful approach to community engagement with Gypsy/Travellers is identified, we may select the location as a case study site; b) provide a national context to locate the findings of the case studies; and c) provide a community of interest for dissemination of the study findings.

Stage three: case studies

Settings and participants.

This stage comprises multiple case study design to explore in-depth community engagement and trust in healthcare for Gypsy/Travellers [ 43 ]. The unit of analysis is the approach to engagement between health services and Gypsy/Traveller communities within a locality. Each case study involves interviews, focus group discussions and documentary analysis. Four case studies will be selected purposively to reflect the diversity of Gypsy/Travellers communities, different approaches to community engagement, and examples of good practice regarding maternity, early years’ or child dental health services (identified through the realist synthesis and online consultation). Three case studies will be in England and one in Scotland to reflect the larger population of Gypsy/Travellers in England and to meet the funders’ remit of advising policymakers in England. The selection of a case study in Scotland strengthens the methodology because there are differences between healthcare structures and remuneration in England and Scotland that could be significant.

Overall, the case studies will include English/Romany Gypsies, Irish Travellers, Scottish Gypsy/Travellers and Eastern European Roma migrants. They will be conducted in two phases of six months. Lessons learned from the first two case studies, for example approaches to recruitment or revisions to interview topic guides, will inform the conduct of the second two case studies.

Our purposive sample strategy is designed to reflect the diversity of Gypsy/Traveller populations living in the UK. We aim to recruit mothers who live in permanent housing, and in authorised and unauthorised sites, and those following a nomadic lifestyle. Where the mother wishes, we will include other family members in interviews Health practitioners will be recruited purposively to include those working in maternity, early years’ and child dental health services. Finally we will include key informants from civil society organisations that are involved in community engagement activities with Gypsy/Travellers. See Table  1 for an overview of the proposed numbers of participants and data generation methods.

The case studies will include analysis of documents, sourced through NHS and civil society organisations, websites, social media and from the research participants, related to methods and activities used by health services and civil society organisations to engage Gypsy/Travellers.

Access and recruitment

There are challenges in recruiting participants from marginalised communities. In each case study we will identify relevant civil society organisations, community workers, local authority or NHS frontline health and social care workers as gatekeepers who can identify potential participants. Leeds GATE will facilitate recruitment through their networks. We are developing relationships both for circulating the online consultation (stage two) and facilitating recruitment to case studies. We will liaise with individuals and organisations working with Gypsy/Travellers with whom we have established links and who are familiar with research process through a previous study [ 44 ]. The Stakeholder Advisory Group will identify additional organisations and specialist services to enahnce recruitment. The gatekeepers will facilitate recruitment of health and social care practitioners and key informants from civil society organisations.

Generating research material

Mothers of pre-school children.

We will conduct semi-structured, face-to-face interviews. The interview topic-guide will focus on perceptions of trust, views, experiences and awareness of maternity, early years’ and child dental health services including barriers to service use, experiences of community engagement activities, and suggestions for ways of improving services.

Health and social care practitioners

We will conduct focus group discussions with telephone interviews as a contingency for those unable to attend a focus group [ 45 ]. The topic guide will include participants’ experiences of service provision for Gypsy/Traveller communities, barriers to providing quality services, organisational context, examples of good practice in terms of engagement and developing trust with Gypsy/Traveller communities and cost implications.

Key informants from civil society organisations

We will conduct telephone interviews, focusing on views and experiences of different approaches to community engagement, barriers and suggested strategies for increasing trust between Gypsy/Travelers and mainstream health services.

The locations of interviews and focus group discussions will be negotiated with participants. All interviews and focus groups will be audio-recorded with the participants’ written consent and transcribed for analysis. Where necessary, interviews with participants from Eastern European Roma backgrounds will be undertaken by a bilingual researcher who will transcribe and translate the audio-recording.

Analysis of research material

We will analyse data thematically, informed by the evaluative framework derived from the realist synthesis in stage one. The research material from each case study will be analysed and reported independently before comparing similarities and differences across case studies [ 46 ]. We will analyse diverse participant experience to avoid essentialist interpretations based on particular cultural groups [ 47 ]. NVivo 10 Software [ 46 ] will be used to manage the data.

Costs incurred by health and social care services will be estimated for each approach identified and represented as per family/per individual depending on the nature of the cost. All potential sources of costs will be identified, for instance cost of a visit from an appropriately trained practitioner. Cost data will be drawn from systematic review evidence and standard costing sources [ 47 ]. Although the results will only provide a conservative estimate of the costs associated with each approach, such knowledge is important to guide decision-making and future trials. If data is sufficiently rich, a theoretical cost-benefit analysis could be included using real life experiences of Gypsy/Travellers to estimate the potential benefits through cost savings.

The findings of the three completed stages of the research (reviews, online consultation and case studies) will be synthesised, using a triangulation protocol [ 48 ], to draw up a list of approaches to community engagement for enhancing Gypsy/Travellers’ trust in mainstream services. This will be done at the data interpretation phase [ 49 ]. A ‘convergence coding matrix’ will be created to display the different sets of findings informed by the evaluative framework developed from the realist synthesis.

Stage four cross-sectoral workshops

Two cross-sectoral workshops will present the draft policy options/recommendations to diverse stakeholders. This approach ensures that options/recommendations culminating from research reflect the realities and constraints of policy and practice [ 50 ]. Furthermore, the workshops will create a community of interest for dissemination. Up to 40 stakeholders will be invited to attend (or nominate a deputy) including: representatives from civil society organisations; frontline maternity and early years’ health services and children’s dental health services staff, service managers and commissioners, national and local policymakers, representatives from Local Authorities, and members of the User and Stakeholder Advisory Groups. Detailed field notes along with materials from the groupwork and plenary sessions, will be synthesised and included in the final report.

Workshop participants will consider:

the importance, acceptability, feasibility, replicability and sustainability of recommendations;

barriers to and positive strategies for implementation of recommendations;

possible consequences and costs of different policy options;

how policy and practice options might work in different healthcare settings (e.g. mental health, adult dental services) and for other vulnerable populations (e.g. vulnerable migrants, homeless).

Public and patient involvement

It would not be possible to undertake this study without the involvement of Gypsy/Travellers. The study team includes the Chief Executive Officer of Leeds GATE, who is hosting the User Advisory Group whose involvement will include: input to the evaluative framework derived from the realist synthesis; development of participant information sheets and consent forms; advice on recruitment, topic guides for interviews and focus group discussions; interpretation of findings, and dissemination activities. In each case study location, we will identify two members of the local Gypsy/Traveller community to advise on the conduct of the research and any local issues of relevance, for example access, recruitment, and locally-tailored participant information sheets. We will support members of the User Advisory Group and local case study community members through two advocacy-training events in the first and second years of the project. The participatory events will bring together community members, researchers and members of civil society organisations.

Dissemination

The main output will be a report detailing: a) an evaluative framework of Gypsy/Travellers’ engagement with health services; b) recommendations for policy and practice on how to enhance trust and improve the acceptability of health services to Gypsy/Travellers; and c) evidence on which to base future implementation strategies including estimation of costs of policy options. To increase impact, we will disseminate widely through written summaries, social media, and academic and professional conferences and publications. This will include: to Gypsy/Travellers communities led by the User Advisory Group; to research participants, and more widely through the network of civil society organisations developed from the online consultation and stakeholder workshops. Short articles will be written for magazines/newsletters. More detailed summaries will be prepared for health and social care organisations and disseminated to relevant professional organisations.

This multi-component study seeks to explore ways of improving the uptake and delivery of health services and thereby reducing health inequalities for Gypsy/Travellers who are marginalised in the UK and across Europe [ 51 ]. The multi-method approach will combine data from a variety of perspectives including Gypsy/Travellers, health professionals and civil society organisations to provide policy recommendations to enhance trust and improve the acceptability of health services to Gypsy/Travellers

Although we have chosen to focus on maternity, early years’ and child dental health services as exemplars of mainstream health services, the findings may have resonance for other health services. Issues of trust and engagement are likely to be determinants of differential uptake of health services for other marginalised populations such as homeless people and refugees/asylum seekers. Thus, our findings may have broader application. The robust methods of public and patient involvement will help to ensure that the research is conducted ethically. The involvement of stakeholders, particularly through the workshops will increase the likelihood that final recommendations reflect the realities and constraints of policy and practice. Through the online consultation and our approach to selecting the case studies we aim to provide best practice guidance.

Our study has several challenges and limitations. Trust and engagement are terms with multiple meanings. We planned the detailed literature reviews to develop theoretical understanding of these concepts which can then be explored in case studies and workshops. We anticipate that the explanatory framework will address different meanings of trust and engagement especially when these might differ between Gypsy/Traveller populations and health services. Within the constraints of the time and funding we are limited to four case studies which will be selected on the basis of good practice. This may reduce our ability to reflect on lessons-learned from approaches that have not worked. By the very nature of the marginalisation and discrimination experienced by Gypsy/Travellers in UK society, it is likely that recruitment to our study will be challenging and require multiple approaches. The ability of the researchers to develop trusting relationships first with gatekeepers and then with participants will be critical to the quality of the findings. We may not be able to recruit those who are most vulnerable e.g. those who do not engage with civil society organisations and/or those living in unauthorised encampments. Health professionals who participate are likely to be those who have an interest in this population group and therefore may not represent all mainstream practitioners. Despite these caveats, our study will add to the evidence-base of what works to increase trust and engagement between marginalised populations and mainstream health services.

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Acknowledgements

We thank the study Stakeholder and User Advisory Groups for their contributions to the design and conduct of the study.

This report is independent research commissioned and funded by the Department of Health Policy Research Programme (Enhancing Gypsy/Travellers’ trust: using maternity and early years’ health services and dental health services as exemplars of mainstream service provision, PR-R8-0314-24002). The views expressed in this publication are those of the authors and not necessarily those of the Department of Health.

Availability of data and materials

Not applicable.

Authors’ contributions

All authors contributed to the design and refinement of the protocol. AM drafted the manuscript. All authors contributed to revisions and approved the final version of the manuscript. Roles in the research: AM (PI) and LS will contribute to all stages of the study; KA and CJ will contribute to selection of case study sites, and analysis and interpretation of the data; SM will lead the literature reviews; NI will contribute to all stages of the study providing advice relating to dentistry; HJ will be responsible for PPI and facilitation of relationships with case study sites; KB will conduct the economic evaluation.

Competing interests

The authors declare that they have no competing interests.

Consent for publication

Ethics approval and consent to participate.

The study has been approved by the NHS Health Research Authority East Midlands - Leicester Central Research Ethics Committee (Ref: 16/EM/0028)

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Karl Atkin, Kerry Bell & Cath Jackson

Dental Hospital and School, University of Dundee, Park Place, Dundee, DD1 4HR, UK

Nicola Innes

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McFadden, A., Atkin, K., Bell, K. et al. Community engagement to enhance trust between Gypsy/Travellers, and maternity, early years’ and child dental health services: protocol for a multi-method exploratory study. Int J Equity Health 15 , 183 (2016). https://doi.org/10.1186/s12939-016-0475-9

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Most Gypsy and Traveler sites in Great Britain are located within 100 meters of major pollutants, shows research

by Alice Bloch and Katharine Quarmby, The Conversation

Gypsy and Traveler communities are among the more socially excluded groups in the UK . There is a long history of government failures in meeting these groups' housing needs.

The shortage of sites has resulted in a homelessness problem. Those who do secure pitches on council-managed sites often have to contend with living near potential hazards.

For our recent study , we mapped local authority-managed Gypsy and Traveler sites in Great Britain. Of those sites, 39% were within 50 meters of one or more major pollutants and 54% were within 100 meters.

The effect on residents is significant. As one of our interviewees, Sarah (all names have been changed), put it:

"You can't breathe here. A lot of people have asthma. Lots of babies in the community have poor health . A lot of them have skin rashes. Nobody ever lived past about 50 here. Whatever is coming out is killing people. Lots of people are dying of chest, COPD and cancer."

Worsening conditions

Between 2021 and 2022, we mapped 291 Gypsy and Traveler sites across Great Britain, noting their proximity to environmental hazards . These included motorways, A-roads, railway lines, industrial estates and sewage works.

To do so, we used the Caravan Count 2020, which lists all authorized local authority managed sites in England and Wales and a freedom of information request to the Scottish government, which gave us the names and addresses of all the authorized public sites in Scotland.

The study included in-depth case studies, site visits and interviews with 13 site residents (including repeat interviews with five site residents on two sites).

Local newspapers that reported on the highly contested historical and current planning processes were also analyzed. Freedom of information requests were sent to local authorities to obtain planning meeting documents and 11 interviews were conducted with representatives of local and national organizations that work with Gypsy and Traveler communities.

When new Gypsy and Traveler sites are proposed by local authorities near existing residential areas, objections come from three main groups: residents, local politicians and local media outlets.

These objections often result in new sites being pushed further to the margins of towns and cities, in places that other communities would not be expected to live.

As a result, sites are often in isolated areas, quite literally on the wrong side of the tracks. They are nestled in among the infrastructure that services the needs of the local settled communities, from major roads to recycling centers.

One of the sites we visited has been in use since the 1970s, despite the fact that, already then, it was located near a waste transfer station. The intervening five decades have only seen conditions on the site worsen.

A chicken slaughterhouse nearby now burns carcasses regularly. The household waste recycling center has expanded to allow for recycling and incineration of solid waste from commerce and industry.

Lorries and other vehicles now come in and out in large numbers, just meters away from some of the pitches. Residents experience constant noise and vibrations. Mary, who lives on the site, says the sound of the skips being deposited from 5am every morning is like a bomb going off: "It drops so hard it shakes the chalet."

The air is always heavy with dust. Residents have to keep their windows closed—even in the summer—to keep out the flies. As Jane, who is the fourth generation of her family to live on the site, puts it: "We are living in an industrial area. It's the air quality, the sand, the dust, the recycling tip is just behind us. The noise is a big problem. There is an incinerator near the slaughterhouse and that's really bad. And the smell…"

Environmental racism

According to the World Health Organization, housing is one of the major factors determining health. The physical conditions of a home—including mold, asbestos, cold, damp and noise—are obvious risk factors. So too, are wider environmental factors, from overcrowding and isolation from services to the relative lack of access to green spaces.

The people we spoke with, including site residents and organizational representatives, highlight the harmful health effects of living on many Gypsy and Traveler sites. This chimes with the government's own reports , which have found these sites to be unsafe.

Research on health inequalities in the UK bears this out. People from Gypsy and Irish Traveler backgrounds report the poorest health and a life expectancy of between ten and 25 years less than the general population. They also have higher rates of long-term illness and conditions that limit everyday life and activities.

The Police, Crime, Sentencing and Courts Act 2022 has further constrained Gypsy and Traveler communities by criminalizing roadside stopping and forcing people on to transit sites. These are designed for short stays and are often in even worse locations than permanent sites.

This poses a plain threat to traditional nomadic ways of life , from traveling in the summer months to fairs and attending religious gatherings.

Thousands of people rely on these local authority-managed sites, located dangerously near the kind of environmental pollutants that are associated with poor health and premature deaths. The term "environmental racism" is used to refer to how people from minority and low-income communities are disproportionately subjected to environmental harm.

Yvonne MacNamara is the chief executive of the non-profit advocacy organization, Traveler Movement. She highlights that the inequalities these communities face are systemic. Local authorities, she says, treat Traveler communities "like second-class citizens."

To one resident's mind, attitudes within local government to Gypsy and Traveler social housing are clearly discriminatory. As she put it: "They wouldn't expect anyone but a Traveler to live here."

Provided by The Conversation

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Most Gypsy and Traveller sites in Great Britain are located within 100 metres of major pollutants, shows research

Professor of Sociology, University of Manchester

Royal Literary Fund Fellow, University of West London

Disclosure statement

Katharine Quarmby received funding from Paul Hamlyn Foundation Ideas and Pioneers grant (2021–22).

Alice Bloch does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.

University of Manchester provides funding as a member of The Conversation UK.

View all partners

Gypsy and Traveller communities are among the more socially excluded groups in the UK . There is a long history of government failures in meeting these groups’ housing needs.

The shortage of sites has resulted in a homelessness problem. Those who do secure pitches on council-managed sites often have to contend with living near potential hazards.

For our recent study , we mapped local authority-managed Gypsy and Traveller sites in Great Britain. Of those sites, 39% were within 50 metres of one or more major pollutants and 54% were within 100 metres.

The effect on residents is significant. As one of our interviewees, Sarah (all names have been changed), put it:

You can’t breathe here. A lot of people have asthma. Lots of babies in the community have poor health. A lot of them have skin rashes. Nobody ever lived past about 50 here. Whatever is coming out is killing people. Lots of people are dying of chest, COPD and cancer.

Worsening conditions

Between 2021 and 2022, we mapped 291 Gypsy and Traveller sites across Great Britain, noting their proximity to environmental hazards. These included motorways, A-roads, railway lines, industrial estates and sewage works.

To do so, we used the Caravan Count 2020, which lists all authorised local authority managed sites in England and Wales and a freedom of information request to the Scottish government, which gave us the names and addresses of all the authorised public sites in Scotland.

The study included in-depth case studies, site visits and interviews with 13 site residents (including repeat interviews with five site residents on two sites).

Local newspapers that reported on the highly contested historical and current planning processes were also analysed. Freedom of information requests were sent to local authorities to obtain planning meeting documents and 11 interviews were conducted with representatives of local and national organisations that work with Gypsy and Traveller communities.

When new Gypsy and Traveller sites are proposed by local authorities near existing residential areas, objections come from three main groups: residents, local politicians and local media outlets.

These objections often result in new sites being pushed further to the margins of towns and cities, in places that other communities would not be expected to live.

As a result, sites are often in isolated areas, quite literally on the wrong side of the tracks. They are nestled in among the infrastructure that services the needs of the local settled communities, from major roads to recycling centres.

One of the sites we visited has been in use since the 1970s, despite the fact that, already then, it was located near a waste transfer station. The intervening five decades have only seen conditions on the site worsen.

A chicken slaughterhouse nearby now burns carcasses regularly. The household waste recycling centre has expanded to allow for recycling and incineration of solid waste from commerce and industry.

Lorries and other vehicles now come in and out in large numbers, just metres away from some of the pitches. Residents experience constant noise and vibrations. Mary, who lives on the site, says the sound of the skips being deposited from 5am every morning is like a bomb going off: “It drops so hard it shakes the chalet.”

The air is always heavy with dust. Residents have to keep their windows closed – even in the summer – to keep out the flies. As Jane, who is the fourth generation of her family to live on the site, puts it:

We are living in an industrial area. It’s the air quality, the sand, the dust, the recycling tip is just behind us. The noise is a big problem. There is an incinerator near the slaughterhouse and that’s really bad. And the smell…

Environmental racism

According to the World Health Organization, housing is one of the major factors determining health. The physical conditions of a home – including mould, asbestos, cold, damp and noise – are obvious risk factors. So too, are wider environmental factors, from overcrowding and isolation from services to the relative lack of access to green spaces.

The people we spoke with, including site residents and organisational representatives, highlight the harmful health effects of living on many Gypsy and Traveller sites. This chimes with the government’s own reports , which have found these sites to be unsafe.

Research on health inequalities in the UK bears this out. People from Gypsy and Irish Traveller backgrounds report the poorest health and a life expectancy of between ten and 25 years less than the general population. They also have higher rates of long-term illness and conditions that limit everyday life and activities.

The Police, Crime, Sentencing and Courts Act 2022 has further constrained Gypsy and Traveller communities by criminalising roadside stopping and forcing people on to transit sites. These are designed for short stays and are often in even worse locations than permanent sites.

This poses a plain threat to traditional nomadic ways of life , from travelling in the summer months to fairs and attending religious gatherings.

Thousands of people rely on these local authority-managed sites, located dangerously near the kind of environmental pollutants that are associated with poor health and premature deaths. The term “environmental racism” is used to refer to how people from minority and low-income communities are disproportionately subjected to environmental harm.

Yvonne MacNamara is the chief executive of the non-profit advocacy organisation, Traveller Movement. She highlights that the inequalities these communities face are systemic. Local authorities, she says, treat Traveller communities “like second-class citizens”.

To one resident’s mind, attitudes within local government to Gypsy and Traveller social housing are clearly discriminatory . As she put it: “They wouldn’t expect anyone but a Traveller to live here.”

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‘My example can change minds’: Roma fighting for place in postwar Ukraine

Campaigners across Europe call on Kyiv to recognise contribution of marginalised community

• Ukraine war – live updates

G rowing up in Ukraine , Arsen Mednik often found himself singled out – at school children would point at him, calling him “gypsy”, while employers were often reluctant to hire him when they learned he was Roma.

But in early 2022, as Russian forces began their savage occupation of his home town of Bucha, Mednik was among the first Ukrainian Roma to volunteer in the defence of the country.

“My only thought was that I wanted to defend people,” he said. “The Russians weren’t paying attention to who was Roma or Ukrainian. They just killed everyone.”

The 34-year-old is among the many Roma people on the frontlines of the war on Ukraine, risking their lives despite their own personal experiences of marginalisation and wider concerns over whether they will have a place in the country when the war ends.

Exact figures of how many from the community are fighting are hard to come by, but it is estimated that there are a few thousand, said Stephan Müller, an adviser on international affairs with the Central Council of German Sinti and Roma.

The actual number among the country’s estimated 400,000 Roma could be even higher – a recent survey of 143 Roma in Ukraine by the Roma Foundation for Europe found that a quarter of respondents had relatives on the frontlines. Of these, a third were volunteers.

It’s a remarkable contribution given that Roma, whose roots in Ukraine trace back centuries, rank among the country’s most discriminated against , complicating their access to decent housing, jobs, healthcare and schooling.

In the years before Russia’s full-scale invasion, Roma were targeted regularly by far-right groups, resulting in the deaths of at least two people and leading Amnesty International to warn in 2019 that “attacks against Roma are becoming increasingly vicious in Ukraine” and urge that perpetrators be brought to justice.

“There is strong antigypsyism in Ukraine, we shouldn’t deny that,” said Müller. “But despite all of this racism, Roma are standing on the side of Ukraine and fighting.”

Müller is among the campaigners across Europe who are calling on Ukraine to recognise the contributions of Roma and do more to secure their place in the country once the war ends. Their efforts are guided by recent history, in which Roma were often expelled or excluded from reconstruction efforts following periods of war.

“So in Kosovo, for example, more than 100,000 – almost two-thirds of the Roma population – were expelled primarily after the war,” said Müller. Some were targeted by violence, forcing them to flee, while others ended up displaced after unequal treatment by authorities.

In Ukraine, Roma who are not on the frontlines have sought to contribute in other ways, said Müller, citing fundraising efforts to purchase army equipment, Roma artists who are holding concerts for the army and Roma-led NGOs who are serving up free meals to non-Roma who are in need.

“This has to be made public,” he said. “And has to be acknowledged, recognised and properly rewarded in a postwar period. Rather than wreak havoc and violence against Roma or expel them.”

The efforts to highlight Roma contributions to the war efforts have come up against the stereotype-heavy coverage of the community by many in mainstream media, said Nataliia Tomenko of ARCA, an agency that supports Roma youth and works to preserve Roma history and culture in Ukraine.

“In general, when they talk about communities in Ukraine, it’s not on the level it should be,” she said. “There is no positive representation.” Her organisation has sought to combat this by spotlighting the stories of several Roma soldiers on its website.

The government in Ukraine has also made some efforts to this end, recognising the contribution of minorities, including Roma, to the country’s defence in state programmes and bestowing an award for bravery to Viktor Ilchak, a Roma soldier from western Ukraine, last year.

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Campaigners have warned that Ukraine’s national recovery plan fails to meaningfully address many of the distinct issues faced by Roma, such as those who live in informal housing without ownership documents, potentially complicating access to compensation or financial assistance for rebuilding, to those who lack the documents needed to prove their citizenship or residence status.

Postwar plans also need to take into account the disproportionate effect that the war has had on many in the Roma community, said Anzhelika Bielova, the founder of Voice of Romni, an organisation working to empower Roma women in Ukraine.

“The vulnerability of already-vulnerable groups was amplified,” said Bielova, whose organisation has shifted to providing humanitarian aid since the war began.

“The majority of Ukrainians have better access to services and information than the Roma community, which is in a vulnerable situation,” she said, citing the lack of internet access and information on available resources that affect many in the community.

The invasion came on the heels of the coronavirus pandemic, both of which forced many schools in the country to shift classes online. Grappling with a lack of technology such as laptops and smartphones, many Roma children were locked out of learning, giving rise to a void that could seriously affect their future but also their postwar role in the country.

Few organisations – whether in Ukraine or outside – have addressed these issues, she said. “In parts of Roma settlements in western Ukraine, people are living in awful conditions, without gas, without heat and without access to water,” she added. “And they’re invisible to humanitarian actors.”

After spending the first days of the war digging trenches in and around Kyiv, Mednik eventually joined the army.

Standing shoulder to shoulder with others in Ukraine, he saw much of the discrimination he had wrestled with his whole life melt away. “People who get to know me, they have a good opinion about Roma,” he said. “I realised that my example can change people’s minds.”

In September, as he crouched in a trench near Kherson, he was hit by an unidentified object, leaving him in a coma for 20 days. When he woke up, he learned he had encephalitis, shrapnel in his lungs and had lost several of his fingers as well as much of his hearing.

After three months of rehabilitation, Mednik returned to the army, helping to coordinate air defence operations. “I have to show a good example for Ukrainians, to show that Roma can fight, not only for themselves but also for other Ukrainians,” he said.

What kept him going, even as exhaustion sets in for many across Ukraine, was his deep desire to defend people. “I’m proud to be Roma. We’re an ancient people, with a history and a culture to match. We’re not military people, we’re a people of peace,” he said. “But in this case, when someone comes to kill me, my family, my friends, I decided to fight. I’m proud to defend people and proud to be Roma.”

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Charity seeking to end discrimination against Gypsies, Travellers and Roma to protect their way of life. It offers advice and information on work, health and wellbeing, rights and more. It has a "health help card" which can be accessed via the website to tell those working in the NHS that a person needs extra help, for example with form-filling or reading and understanding something. Its helpline is open Monday to Friday, 10am to 4.30pm.

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Consultation to find accommodation for travellers

The consultation will look at the proposed sites to see which should be allocated to meet the five year accommodations needs by the current national planning policy

• Published 10 May 2024

A consultation to find proposed sites for Gypsies, travellers and showpeople has been launched.

The Borough Council of King's Lynn and West Norfolk said suggestions would be put forward as part of the local plan for the area.

A Gypsy and Traveller Accommodation Assessment by the council in June 2023 identified that the accommodation needs for gypsies and travellers had risen more from their previous assessment in 2016.

People have until Friday 21 June , external to share their views on the sites and policies.

Jim Moriarty, independent councillor and deputy of West Norfolk Borough Council, said: "The provision of sites and policies to meet the needs of Gypsies, travellers and travelling showpeople is a legal requirement and an important part of the borough's local plan.

"This consultation takes the process a step further as we are now asking for views on proposed sites and allocations.

"These views will be passed on to the local plan inspectors for their consideration so I would urge anyone interested to join in with the consultation and make a formal representation."

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• Volume 14, Issue e1
• Gypsy, Traveller and Roma experiences, views and needs in palliative and end of life care: a systematic literature review and narrative synthesis
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• http://orcid.org/0000-0002-6565-6057 Kathryn Charlotte Dixon 1 ,
• Rebecca Ferris 2 ,
• Isla Kuhn 3 ,
• Anna Spathis 1 and
• http://orcid.org/0000-0002-4505-7743 Stephen Barclay 1
• 1 Department of Public Health and Primary Care , University of Cambridge , Cambridge , Cambridgeshire , UK
• 2 Cambridge Postgraduate Medical Centre , Addenbrooke's Hospital , Cambridge , Cambridgeshire , UK
• 3 Medical Library , University of Cambridge , Cambridge , Cambridgeshire , UK
• Correspondence to Kathryn Charlotte Dixon, University of Cambridge Department of Public Health and Primary Care, Cambridge, UK; kcd23{at}medschl.cam.ac.uk

Background Gypsy, Traveller and Roma communities are known to experience health inequalities. There has been little focus on palliative care in these communities despite the well-recognised inequalities of access to palliative care in other minority ethnic groups.

Methods Systematic review and thematic analysis of the current evidence concerning palliative care experiences, views and needs of Gypsy, Traveller and Roma communities. Medline, Embase, Emcare, CINAHL, PsycINFO, Web of Science, Scopus, AMED, Global Health, Psychological and Behavioural Sciences Collection and BNI were searched up to November 2020, alongside author and citation searching. NHS England, Hospice UK, National Audit Office and OpenGrey were searched as grey literature sources. Gough’s ‘Weight of Evidence’ framework was used for quality appraisal.

Results Thirteen papers from eight studies were included in the synthesis. Although there was variation between communities, three overarching and inter-related themes were identified. (1) Strong family and community values include a preference for healthcare to be provided from within the community, duty to demonstrate respect by attending the bedside and illness as a community problem with decision-making extending beyond the patient. (2) Distinct health beliefs regarding superstitions around illness, personal care, death rituals and bereavement. (3) Practical barriers to non-community healthcare provision include communication difficulties, limited awareness of and access to services, tensions between patients and healthcare professionals and lack of training in delivering culturally appropriate care.

Conclusion A wide range of factors influence Gypsy, Traveller and Roma community access to palliative care. Community diversity requires sensitive and highly individualised approaches to patient care.

PROSPERO registration number 42019147905.

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https://doi.org/10.1136/bmjspcare-2020-002676

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Introduction

Gypsy, Traveller and Roma communities are Europe’s largest minority ethnic group. 1 Although these communities are culturally diverse, they are frequently grouped together within healthcare policy and also by the communities themselves. 1–3 The Council of Europe uses the term ‘Roma’ to refer to itinerant groups within Europe. 2 Although Irish Travellers are included within the Council of Europe’s definition of ‘Roma’, they are genetically distinct from European Roma, 4 with Irish ancestry as opposed to Indian. 2

Despite a traditional nomadic lifestyle, up to 85% of travelling communities in Europe today are settled in one place with those maintaining a travelling way of life found mainly in France, the Benelux countries, Switzerland, Ireland and the UK. 2 When settled, they may live in permanent bricks-and-mortar housing or in mobile homes or caravans and some groups are seminomadic, travelling within the summer months. 5

Gypsy, Traveller and Roma communities experience significant health inequalities in multiple areas of health and social care. 6 7 These include reduced life expectancy, ranging from 10 to 20 years lower than the general population, higher maternal and infant mortality, lower uptake of immunisations and therefore higher rates of vaccine-preventable diseases, higher prevalence of anxiety and depression and higher prevalence of chronic diseases such as diabetes, asthma, cardiovascular disease and hypertension. 5 7–10 There is recognised reduced access to and engagement with services across the healthcare setting and a multitude of barriers to healthcare including illiteracy, discrimination and reduced awareness of services available. 11

Inequality of access to palliative care is a global health problem and the WHO is spearheading efforts to reduce this. 12 13 Providers of palliative care are increasingly focusing on ‘hard-to-reach groups’ in an attempt to enhance access. 10 14 It is already known that Gypsy, Traveller and Roma communities have poor access to, and engagement across, healthcare services generally, 11 and it is likely that this extends to palliative and end of life care services. Good end of life care should be an integral part of all health systems. 13

Given the known inequalities in healthcare for patients from minority ethnic groups, and specifically for Gypsy, Traveller and Roma patients, and the importance of providing culturally and socially appropriate palliative care, a systematic review of palliative and end of life care for patients in these communities is highly topical. Previous systematic reviews have evaluated Gypsy, Traveller and Roma access to and engagement with health services in general 11 and palliative care within black and Asian minority ethnic groups in the UK. 15 This is the first systematic review to address the palliative and end of life care experiences, views and needs within travelling communities.

Search strategy

The search strategy was developed with a specialist information technologist (IK). Search terms to identify articles about Gypsy, Traveller and Roma peoples were adapted from those used by McFadden et al . 11 The search strategy was tailored for each database searched (Medline, Embase, Emcare, CINAHL, PsycINFO, Web of Science, Scopus, AMED, Global Health, Psychological and Behavioural Sciences Collection and BNI). Full search strategies are available in online supplemental material 1 . No restrictions were applied to the searches. All databases were searched from inception to September 2019, and updated in November 2020. NHS England, Hospice UK, National Audit Office and OpenGrey were searched for ‘gypsy, gipsy, traveller, roma and rroma’. Citation and author searching was undertaken for all relevant full-text articles.

Supplemental material

Study selection.

Studies, including reports and PhD theses, fitted the criteria if they reported original research on the palliative and end of life care experiences, views and needs of adult Traveller, Gypsy or Roma people, whether from the perspective of members of these communities or healthcare professionals. Book chapters, studies focusing on children (under 18 years of age) or articles where the full text was not available in English were excluded.

After exclusion of duplicates using EndNote, two reviewers (KCD and RF) independently screened titles and abstracts and then full-texts, with discrepancy between reviewers resolved by discussion to reach consensus. Title and abstract screening was facilitated by the use of the web app Rayyan. 16 One reviewer (KCD) conducted the grey literature search, citation and author searching and articles chosen for inclusion were agreed by the second reviewer (RF).

The study identification process is summarised in figure 1 . Database and grey literature searches identified 1296 records after removal of duplicates. Seventeen full-text articles were assessed for eligibility with seven of these being eligible for inclusion. Each of these seven articles underwent citation and author searching, identifying a further three papers, one PhD thesis and two reports. Citation and author searching was then conducted for these records. One further unpublished study of relevance was identified but the authors did not respond to requests for access to the article. 17 Of the thirteen final articles selected for inclusion, five research papers reported on the same set of interviews and were therefore treated as one study. In addition, one report and one research paper reported on the same results and were also treated as one study. A total of thirteen papers relating to eight studies were therefore included in the qualitative synthesis.

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PRISMA Flow.

Quality appraisal

Two reviewers (KCD and RF) independently appraised the quality and relevance of the included studies using Gough’s ‘Weight of Evidence’ (WoE) framework. 18 Disagreements in quality assessment decisions were discussed and consensus achieved. The WoE framework provides an overall judgement on the quality and relevance of a study in answering the review question (WoE D). The adaptation of Gough’s WoE for this review is shown in table 1 .

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Review-specific Gough’s ‘Weight of Evidence’ high-quality criteria (adapted from Gough 2007) 18

Data extraction and synthesis

Information regarding publication details, study aims, participants, recruitment and research methods were extracted on to a review-specific data extraction form by KCD and checked by RF. The form was piloted on three studies before continuing with its use. Results data were extracted line by line in to an Excel spreadsheet by KCD prior to coding (see below). RF checked 10% of data extracted.

Data synthesis used a thematic analysis approach, adapted from that suggested by Thomas and Harden, 19 involving three main stages after data extraction:

Coding of the data: KCD coded all individual data points in Excel, developing a coding framework whereby different data points shared the same code. By using an inductive framework rather than developing a priori codes, potential for bias was reduced and significance of original data was not lost. RF checked a representative proportion of codes from each study to ensure consistency in code assigning across studies.

Generation of descriptive themes: KCD grouped the codes into descriptive themes on paper, which were agreed by discussion with RF. Codes from studies assessed to be of low quality under WoE D were only used in generation of descriptive themes if they supported codes from a study of medium or high quality.

Generation of analytical themes: KCD and RF independently, and then by discussion, organised the findings into overarching themes.

Eight studies, described in thirteen articles, were synthesised in this review. Studies reported on practice in the UK (n=4), 20–23 Ireland (n=1), 24 25 Romania (n=1) 26–30 and Spain (n=2). 31 32 Studies focused on members of different travelling communities: Roma (n=3), 26–32 Irish Travellers (n=1) 24 25 and English Gypsies (n=1). 20 Two studies did not identify participants beyond ‘Gypsy and Traveller’, 22 23 and one study involved both Irish Travellers and English Gypsies. 21 The majority of participants were female with only two studies incorporating male participants. 26–30 32 Three studies reported the views of healthcare professionals: one in detail via interviews and questionnaires, 24 25 one via the involvement of two participants 32 and one via focus groups with 30 health mediators (although there was limited analysis of this in the article). 30 Methods included focus group discussion (n=4), 21 23–25 31 qualitative interviews with members of travelling communities (n=3), 20 22 26–30 qualitative interviews with healthcare professionals (n=1), 24 25 questionnaire (n=2), 21 24 25 observational fieldwork (n=1) 20 and communicative daily life stories (n=1). 32 The details of each study and their weighting on the WoE framework are summarised in table 2 . One study was weighted as high quality, 21 five as medium 20 22–25 31 and two had a low weighting. 26–30 32 One study was mainly focused on grief and bereavement after the loss of a child and therefore only information relevant to the review question was extracted. 21

Summary of included studies

Three overarching analytical themes were found: (1) strong family and community values, (2) distinct health beliefs and (3) practical barriers to non-community healthcare provision.

Strong family and community values

The importance of family and community was echoed by all studies. Family are considered to have a duty to care for a dying relative and there is a reciprocal desire by the dying person to be cared for by their family. 22–25 28 29 31 Consistent throughout all studies was the overriding desire to die at home, surrounded by family and the community. Attending the bedside of a dying community member is seen as a marker of respect for that person and their family. 20 21 26 32 Large groups gather around the bedside with as many as 50–200 people paying their respects at and around the time of death. 20–25 27–29 32 Financial, as well as emotional, community support is expected. 28 31 32

A consistent theme was that healthcare from within the community is preferred to external care. Although respectful of healthcare staff, it was considered that family members are most informed and best placed to judge a patient’s needs. 24 25 31 Decision-making around death and dying extended beyond the individual patient, with multiple family members requesting personal updates from doctors 24 25 and some families expressing the wish to withhold diagnoses from patients. 20 27

Despite the overwhelming message of the significance of family and the wider community for patients with terminal conditions, three studies described the concept of shame in being terminally ill or seeking support, with a need to hide the illness from the wider community due to the fear of social isolation. 23 27 31 In one study, participants were ashamed to accept care from a non-Traveller or non-Roma person. 32

Distinct health beliefs

Distinct health beliefs were described in relation to general health and hygiene, and specific beliefs around cancer and death. Hygiene rituals, including beliefs about impurity were described by three studies, 20 27 30 with the suggestion that care in a hospital or hospice environment could cause distress if normal hygiene practices could not be followed. 20

Superstitions were described around cancer. This included fear of discussing or saying the word ‘cancer’ with a perception that this could lead to disease progression or bring misfortune on family members. 24 25 27 There was also a fear that non-contagious conditions could spread and that cancer treatments might actually cause disease growth. 20 29 Similarly, death and dying were seen as taboo topics, socially unacceptable to discuss; 21 23–25 27 there were descriptions of research participants blessing themselves during focus groups and interviews in one study. 24 25 Connected to this was a wish not to know the exact details of an illness 24 25 and a belief that a patient knowing their own diagnosis could cause further harm. 20 26 27 Several studies highlighted the importance of ‘hope’ with loss of hope itself causing harm or hastening death. 21 24 25 27 31 Due to this belief, hospice care was described as a last resort by two studies as hospices were seen as places to die. 24 25 31

Grief is considered a private matter and several studies raised the issue that grief is not discussed or shared within these communities, which can lead to prolonged grief or unresolved bereavement. 20–22 24 25 Gender roles were presented in that women may be expected to grieve openly whereas men can cry only at the graveside. 21 The duty to care for unwell relatives resided with women rather than men. 31 In addition, when accessing healthcare or obtaining health-related advice, women only speak to women and men to men. 20

Death rituals were important 23–25 27 30 and although in some cases linked to religion, cultural traditions tended to supersede religious practice. 21 24 25 32 Examples include a ‘rite of light’ (the lighting of a candle near the time of death to enable passage of the soul to ‘the other world’), 24 25 27 30 the need for large numbers of family and community to say goodbye personally and immediately after death, 23–25 29 32 often via a vigil 32 and the need for appropriate respect of a person by dressing them ‘properly’ before death. 30 Death rituals and traditions were described as changing over time, with associated intergenerational differences. 21 24 25 For example, one tradition involves burning the place of death, yet many participants remarked on the change in this belief over time, given the expense and move away from wooden trailers; families report preferring to have the trailer cleaned and blessed by a priest, or selling it. 21 24 25

Some studies evaluated views on life-sustaining treatment and advanced decisions about care. 24 25 27 31 Generally, written documents were not thought useful. Although in part due to variable literacy, this appeared mainly to be due to a perception that the family already know how to care appropriately for the patient, without need for written plans. 24 25 31

Practical barriers to non-community healthcare provision

Barriers to non-community healthcare in general and palliative care specifically were identified. Illiteracy and a misunderstanding of medical terminology were cited as common initial barriers to all non-community healthcare. 20 23–26 32 Three studies raised concerns regarding reduced access to a General Practitioner. 20 22 24 25 Late presentation of disease was then attributed to either fear of the diagnosis, 24 25 lack of registration with a General Practitioner 20 22 or reluctance to see a doctor. 20 24 25 Participants reported experiences of staff basing their ideas on stereotypes or showing a lack of respect for patients and their families from travelling communities. 20 22–25 30 32 Several studies raised the idea of ‘conflict’ between staff and patients with patients feeling that staff did not understand their culture and had limited experience in looking after them. 22–25 30 32 Likewise, healthcare professionals agreed that they had limited knowledge in caring for these patients and would appreciate training, which was felt to not be available. 21 24 25

There were mutual concerns from both the community and healthcare professionals regarding factors leading to reduced access to palliative care specifically. Travellers reported limited knowledge of what palliative care is and what services are available 20 23–25 but also raised concerns that the services available may not be appropriate or targeted towards people from their community. 21 22 Similarly, staff expressed views that the service may not be appropriate for travellers and lack of knowledge as to whether external non-community healthcare was acceptable. 24 25 Healthcare professionals suggested that the living situation and lifestyle for their travelling patients would impact the provision of appropriate care and follow-up. 24–26 They also raised concerns about the safety of other staff when attending to patients alone on a caravan site. 24 25

Solutions were suggested by both parties; travellers raised the issue of a lack of targeted support being available and the idea of trained travellers providing bereavement care or advice to patients and families or acting as a liaison between the community and healthcare professionals. 20–25 32 There were examples where allowances for cultural needs had enabled positive experiences, such as catering for large groups to attend the bedside. 21–23

Theme integration

There were commonalities, but also findings of significant diversity between communities in relation to all three themes. It was also clearly acknowledged across several studies by Irish travellers, English Romany Gypsies and Roma that views differed within and between communities with not all travelling communities sharing the same values or practices. 20 24–28

The three themes do not exist in isolation, nor are they static entities. This relationship is conceptualised in figure 2 . Each pair of the three themes connect, for example the wish to die at home could be seen as a barrier to non-community healthcare if there is limited awareness of services that can help facilitate this, such as hospice at home. Health beliefs and family values cannot exist without the other; the importance of caring for or being with a dying relative is inherently linked to a cultural belief system of right and wrong behaviours. Death rituals and the community view of a hospice as a last resort could prevent a patient and their family from accessing hospice support. The encompassing square of the wider society represents the influence of external factors on the community culture, such as the change in tradition of ritualistic burning over time, or the influence that the healthcare setting or professional has on future engagement of a travelling community with non-community healthcare.

Theme Integration.

This review identified three interconnected themes underpinning palliative and end of life care within travelling communities. Travelling communities have strong family and community values, often preferring to die at home, with care being provided by extended family. Distinct health beliefs include not discussing cancer or death and dying and the importance placed on hope. Illiteracy, lack of knowledge of medical terminology and communication issues also present barriers to non-community healthcare. Healthcare professionals’ knowledge of, or inappropriate professional attitude towards travellers, can be a further barrier. These beliefs, values and barriers were dynamic entities, influenced by varied and distinct community cultures.

There is known inequity in the provision of palliative care in the UK with barriers to accessing palliative care frequently identified. 33 The findings of this review echo those found by Evans et al 15 in black and minority ethnic groups in the UK, with common themes including families preferring to care for their relative at home and community negativity if this does not occur, hospital care being associated with hope, reduced awareness of palliative care services, communication problems, conflicts regarding diagnosis disclosure and healthcare professional concern regarding a need for training. 15 Evans et al acknowledge that their review did not identify any articles regarding white minority ethnic groups in the UK and suggested that this echoes a genuine lack of research in the field.

Other than the studies analysed in this review, there is little evidence available regarding the palliative and end of life care experiences, views and needs of travelling communities. Okely’s book ‘The Traveller-Gypsies’ published in 1983 and based on an ethnographic study, presented a chapter on end of life in the Gypsy community. 34 As inclusion criteria for this review did not include books, this was not included in thematic analysis. There are some similarities between Okely’s book and the findings of this review, but also some key differences such as the preferred place of death, which Okely stated was not at home. This could represent the change in values and practices overtime, with the fieldwork for Okely’s study carried out in the 1970s, compared with 2003 onwards for studies included in this review.

All three themes point to reduced access to palliative care services in travelling communities. This finding is consistent with the candidacy framework which describes access to healthcare by vulnerable groups. 35 Candidacy is a construct which describes how a vulnerable person’s eligibility for healthcare is negotiated between individuals and health services; it is subject to influences from the individual’s social context and from broader factors such as allocation of resources, policy and the healthcare setting. In the context of palliative care in travelling communities, the development of local resources to address the needs of travellers and the building of trusted relationships with primary care professionals, such as General Practitioners, is likely to be vital in facilitating appropriate awareness of and access to specialist services.

Strengths and limitations of the review

The main strength of this review is that it is broad and comprehensive, including extensive evaluation of grey literature, given the limited publication of relevant literature in the conventional electronic databases. Data extraction and analysis were systematic, with an inductive coding framework and second author checking at each stage, reducing author bias in assignment of codes and themes. Thematic analysis allowed for trends across all studies to be identified and only using codes from studies with a low WoE D grade where they supported findings from other studies, further improved the validity of the findings. Although the search strategy was not restricted by language, studies were excluded if an English full text was unavailable. One Spanish study was excluded for this reason. 36

Generalisability of the findings was limited by study heterogeneity. Only two studies involved male participants, both providing only a low weight of evidence on Gough’s scale. 26–30 32 The lack of male participants was stated as being due to either failure to recruit male participants where their involvement had been planned or due to local advisory groups suggesting that male participants would be unlikely to engage in conversation with female researchers. 20 21 24 25

Implications for clinical practice and policy

Although this review identified similarities in palliative and end of life care experiences, views and needs within Gypsy, Traveller and Roma communities, it also identified key differences between and within them. Policies must therefore avoid blanket statements about healthcare for Gypsy, Traveller and Roma communities, given the disparate needs of each community. Healthcare professionals reported inadequate training in how to look after patients from travelling communities. 24 25 However, it is not practical to give training to healthcare professionals for every minority ethnic group, culture or religion. Instead, the most important aspect is that healthcare professionals recognise that there are a multitude of factors affecting patient preferences for palliative and end of life care and only individual discussion with the patient and their family can lead to patient-centred, personalised care.

The need for there to be a good relationship between the community and professionals and the importance of the involvement of a known and trusted, respectful professional to enable a positive experience of non-community healthcare was clear. 21–25 30 Travellers and healthcare professionals need to work together to design culturally sensitive health services. Simple steps may be highly valued, for example providing an external door to a hospice room for extended family members to use. 22 Specific liaison roles could facilitate suitable healthcare provision. It has been suggested that travellers may find it more appropriate to discuss concerns such as bereavement, with another traveller who has been given appropriate training. 21 24 25 Local advocates for travelling communities, whether travellers themselves or healthcare professionals with a specialist interest, could provide significant benefit by acting as a liaison between patients and healthcare professionals. Roma Health Mediators, who are members of the Romani community, in countries such as Romania, Bulgaria and Slovakia have, for example, contributed to improving access to healthcare services by facilitating interaction between Romani patients and medical professionals. 37

Involvement of primary care services is likely to be valuable because of existing trusted relationships. Generalist palliative care may preclude the need for specialist services. A trusted primary care professional, already known to the community and able to provide continuity of care is likely to be invaluable in supporting patients from travelling communities at the end of life. This is in keeping with WHO recommendations that, as many patients prefer to remain at home for end of life care, community palliative care should be integrated into primary care services worldwide. 38

Implications for research

A series of qualitative studies are needed to gain insight into the exact and varied health needs of each travelling community. Research involving cocreation of acceptable services, with key stakeholders within these communities, will be vital. Such services could then be evaluated using outcomes of relevance to each community. Caution would be needed to avoid inappropriate extrapolation of results across different communities. Service design research could include investigating how to optimise selection and training of people in liaison roles. Understanding healthcare professionals’ experiences of caring for people from travelling communities could also provide insights into where service changes could be made.

Given the propensity of female participants, it is vital to determine the experiences, views and needs of men. Considering the cultural sensitivities, carefully designed research with extensive stakeholder consultation will be a prerequisite. Only studies from the UK, Ireland, Spain and Romania were identified. Further investigation of palliative and end of life care within itinerant groups outside of Europe is warranted.

This review has identified a number of shared palliative and end of life care experiences, views and needs across Gypsy, Traveller and Roma communities. Many values, healthcare beliefs and practical factors act to hinder access to palliative care that meets the needs of these communities. Furthermore, the communities are diverse, requiring highly personalised care that addresses individuals’ specific cultural needs.

Successful engagement between health services and patients from these communities requires respectful relationships and trust between the two groups, which can be facilitated by individuals providing mutual liaison. Primary care staff, who are able to build a rapport with their local travelling community, may be ideally placed to coordinate and deliver culturally appropriate palliative care that meets the unique needs of these communities.

Ethics statements

Patient consent for publication.

Not required.

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Supplementary materials

Supplementary data.

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• Data supplement 1
• Data supplement 2

Correction notice This article has been updated since it was first published. The article type has been changed to Systematic review.

Contributors Search strategy was developed by KCD and IK. KCD and RF independently screened titles and abstracts and appraised the quality of included studies. KCD coded the data and developed descriptive themes. Coding was checked by RF and themes agreed by discussion with RF and AS. KCD wrote the final manuscript with supervision, comments and review from AS and SB.

Funding KCD is an Academic Clinical Fellow funded by Health Education East of England. SB is supported by the National Institute for Health Research (NIHR) Applied Research Collaboration East of England (ARC EoE) programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Competing interests None declared.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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