This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.
Better understanding of the Gypsy, Traveller and Roma communities would help develop healthcare services which are more acceptable to them. New research explored values and beliefs in communities, along with the practical barriers their members face in accessing healthcare. The research team says that these communities need sensitive and highly personalised services.
People in Travelling communities are known to struggle to access and engage with standard healthcare services. This research explored the reasons why. It focused on palliative care (which aims to make someone comfortable, rather than to cure them) and end of life care.
The research described the strong family and community values, distinct health beliefs and practical barriers to healthcare access within Travelling communities. The researchers say that a better understanding of these factors would help healthcare professionals and policy makers take a more sensitive and personalised approach to the care offered to members of these communities.
What’s the issue?
Gypsy, Traveller and Roma communities have less access to, and are less likely to engage with, healthcare services than other groups in the population. The barriers they face include discrimination, lack of awareness of services, and illiteracy (being unable to read).
This has serious consequences in many areas of healthcare. Members of Gypsy, Traveller and Roma communities generally do not live as long as the general population. They are less likely to be vaccinated. Women are more likely to die in pregnancy or shortly after birth; rates of deaths among infants are also higher. People are more likely to have long-term conditions such as diabetes, asthma, heart disease and high blood pressure.
This is the first systematic review to explore these communities’ engagement with palliative care and end of life services. Researchers analysed evidence of communities’ experiences, views and needs.
This study examined findings from 8 studies in the UK, Ireland, Romania and Spain. Some of the studies were based on questionnaires and observations, others included group discussions or interviews with Travelling communities. Three studies explored the views of healthcare professionals. Only two included male Travellers.
Three themes emerged from the research.
1. Strong family and community values
Community members had an overriding desire to die at home, and to be cared for by family. The family was thought to have a duty of care to a dying relative, and to be the best judge of their needs. Large numbers of community members (sometimes up to 200) visited a dying person as a sign of respect. Some studies described feelings of shame in being terminally ill or seeking support, especially from a non-Traveller or non-Roma person.
2. Distinct health beliefs
Participants described hygiene and death rituals that might not be possible in a hospital or hospice. Documents about care options were often unhelpful. This was partly because of low literacy, but mostly because the family felt they knew how to look after their relatives. Death was a taboo subject that was rarely discussed. Saying the word ‘cancer’ was thought by some to make the condition worse or bring bad luck. Grief was considered a private matter; men could only grieve openly at the graveside. Communities believed that men should only speak with men about healthcare: women only with women.
3. Practical barriers to health provision from outside the community
Common barriers to healthcare included illiteracy and reduced access to a GP. Fears of diagnoses delayed help-seeking and therefore diagnosis. Staff said they had limited knowledge about communities, and lacked training. Travelling communities said they had little knowledge of palliative care and were concerned that services might not be appropriate. Staff said the lifestyle of Travelling communities might impact the delivery of care.
Why is this important?
Better understanding of Travelling communities’ values and beliefs – and the practical barriers they face – could help improve their access to palliative care. For instance, awareness of their beliefs about discussing cancer and death suggest that a different approach is needed to these conversations. However, values and practices vary within and between the different communities, which underlines the need for a highly personalised approach.
Some studies in the review suggested potential solutions. For instance, some Travellers could be trained in providing bereavement advice. These people could also act as a liaison between the community and healthcare professionals.
Simple steps could make a difference. An alternative access route (such as an external door to a hospice room) for community members could enable large numbers to attend a dying patient’s bedside. Community members often had a strong preference to die at home. Wider awareness that some services (such as hospice at home) can help them to die at home, could reassure them that appropriate services are available.
Local resources are needed to address Travellers’ needs and build trust with primary care professionals. This study has shown the need for work to find out what these communities want, and how they think barriers to accessing healthcare can be removed.
Training for healthcare professionals is important, but they cannot have in-depth knowledge of every ethnic minority. The researchers recommend instead that health staff are taught to recognise that every patient has their own individual preference for palliative care.
Discussions with individual patients and their family can tease out preferences. Sensitive conversations could foster trust between healthcare professionals and these communities. Allowing families to be fully involved in health conversations might encourage communities to engage with healthcare. Having a single trusted healthcare professional could improve continuity of care.
Local advocates could improve the relationships between communities and healthcare professionals. In some countries (Romania, Bulgaria and Slovakia), trained Travellers have improved communities’ access to healthcare and helped community members discuss delicate subjects, such as bereavement and terminal illness. The researchers suggest that healthcare professionals with a special interest in, and a good relationship with, the communities could also act as advocates.
More research is needed on the health needs and wishes of each Travelling community. Members of communities could work with healthcare professionals to co-create health services.
Future research should include male participants, given the gender differences found in this work.
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This Alert is based on: Dixon K, and others. Gypsy, Traveller and Roma experiences, views and needs in palliative and end of life care: a systematic literature review and narrative synthesis. BMJ Supportive and Palliative Care 2021; doi:10.1136/bmjspcare-2020-002676
Previous research on this population: McFadden A, and others. Gypsy, Roma and traveller access to and engagement with health services: a systematic review. European Journal of Public Health 2018;28:74–81
Understanding health needs of the traveller community: a commentary from the Royal College of Physicians.
Funding: This research is supported by the NIHR Applied Research Collaboration East of England (ARC EoE) programme.
Conflicts of Interest: The study authors declare no conflicts of interest.
Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.