You are on shift in your emergency department in London. You ask your registrar, who has recently moved from Ireland, to review one of your patients. He notices that the family are members of the Irish Traveller Community. You have never heard of this group of people and decide to quiz your registrar.
Who are the Irish Travellers?
The Irish Travellers are an Irish ethnic minority group with a proud history and culture. They have a value system, language, customs, and traditions, that make them an identifiable group, both to themselves and others. Nomadism and family are the core features of their identity. Early and arranged marriage, large families and consanguinity are cultural norms.
But I wouldn’t meet them in the UK, right?
Irish travellers don’t just live in Ireland. Travel and nomadism have resulted in Irish Travellers settling in many parts of the world. It is estimated that there are 40,000 living in Ireland, 15,000 in The UK, 6000 in mainland Europe and 7000 in America.
The importance of family in the community means that they will often live in close proximity to each other and form small neighbourhoods made up almost exclusively of Irish Travellers. This can result in some hospitals in the UK seeing many Irish Traveller patients and being familiar with their customs, and some hospitals seeing very few and, therefore, not having the insight required to provide them with the best treatment.
How would I recognize them?
Ask them!
There are many ways to ask. It is important to ask in a sensitive, non-judgmental and open-ended manner.
Questions such as “Is there anything we should know about your culture or background that would help us look after your child?” or “Are you a member of any cultural or ethnic groups?” are useful.
Alternatively, it may come up during your routine social history and may be volunteered by the family. If you ask about consanguinity the family may explain their background, where a large proportion of marriages are consanguineous.
Why is it important that I recognize Irish Travellers?
It is important to recognize that a patient is a member of the Irish Travelling Community because your understanding of their background, healthcare needs and potential risk factors may greatly influence your decision-making. Let’s look a little closer at factors that may affect their healthcare:
Demographics
The population pyramid for the Traveller population is similar to that of developing countries, with a high number of young people and very few older people. The All Ireland Traveller Health Study (AITHS) in 2010 found that 42% of Travellers were under 15 years of age, compared with 21% of the general population. The same study found that only 3% of Travellers were aged 65 years and over compared with 13% of the general population. The study only identified 8 travellers on the island of Ireland that were over 85 years of age.
Consanguinity accounts for approximately 71% of marriages. This is a first cousin in 39%, first cousin once removed in 11% and second cousin in 21%.
Life expectancy is significantly lower for Travellers than for the general population. For Traveller women it is 70.1 years, 11.5 years less than the general population. The life expectancy for Traveller men is 61.7 years, 15.1 years less than the general population.
The infant mortality rate is 3.6 times higher than the general population (14.1 deaths per hundred thousand compared with 3.9 per hundred thousand). Indeed, Irish Travellers have been found to have the highest infant mortality rate in Europe.
Accommodation
In recent years more and more Travellers have given up their nomadic past and settled in houses or trailer parks. It is estimated that 73% of Travellers live in a house with 18.2% living in a mobile home or caravan. These mobile home parks, or halting sites as they are known in Ireland, can have very poor conditions with inconsistent access to clean water, electricity, flushing toilets and safe, clean areas for children to play.
Relationship with healthcare
Irish Travellers face many barriers to healthcare and discrimination on a daily basis. The AITHS study found that the level of trust by Travellers in health professionals was only 41%, compared to 83% in the general population. Over 50% of Travellers had a concern about the quality of care they received when they engaged with services. Over 40% felt they were not treated with respect and dignity when accessing healthcare.
It is important to appreciate these barriers and make every effort to build a relationship and foster trust. This is particularly important when trying to obtain a family history. Travellers can be very private in relation to the health of their family and often will not disclose sensitive details in front of other family members. It is prudent to ask these sensitive questions alone, with the parents, and not in front of other relatives.
Education
Many Travellers have a negative experience of the education system, with bullying and discrimination being widespread. Segregated education, with Traveller-only classes, has only been abandoned within the last 15-20 years. These factors have resulted in high drop-out rates in primary and secondary education.
Only 13% of Travellers complete secondary education, compared with 92% of the general population. Less than 1% of Travellers go on to tertiary level education. The 2016 Census only identified 167 Irish Travellers with a tertiary level qualification. Figures from the 2022 census are not yet available but it is likely they are much higher. Various support programs have greatly increased the accessibility of higher-level qualifications in recent years.
Literacy results can be very variable, with one large study estimating that 28.8% had difficulty reading and 50% had difficulty reading medication instructions.
Breastfeeding
Breastfeeding rates are generally quite low. Only 2.2% of Traveller women initiate breastfeeding, compared with approximately 50% in the general population. There are many factors responsible for this.
Formula feeding has historically been thought of as a status symbol within the Travelling Community and considered to be something that better-off women did. This fostered a stigma toward breastfeeding, resulting in generations of women who did not have the social support to breastfeed available because no one in their extended family may have breastfed. Breastfeeding mothers may also face negative reactions within their community if they feed in public.
The high incidence of galactosaemia in Ireland means newborns of Traveller parents are initially given soy milk while awaiting a screening test. This practice has helped create an image of breastfeeding as being “dangerous” within the community. It also makes things difficult for women hoping to establish breastfeeding. These factors may result in healthcare professionals being less inclined to discuss breastfeeding as there is an assumption that they will not want to breastfeed. This makes seeking support even more difficult.
Mental health and suicide
Mental health issues are three times higher in Travellers than in the general population. Suicide is six times more common in Travellers than in the general population and accounts for 11% of all Traveller deaths.
Positive aspects of culture
While it is important to be cognizant of the difficulties experienced by Irish Travellers we must also be aware of the positive aspects of their culture. Irish Travellers are immensely proud of their heritage. They have strong family bonds and support systems.
Most Irish Travellers are practising Catholics with the church providing a strong support structure. In a recent study, 89.4% of Irish Travellers rated religion as either ‘important’ or ‘very important’ in their lives.
There are also strong advocates within the Irish Travelling Community. The Pavee Point Organisation has long been a source of support and guidance for Travellers and has fought tirelessly for their rights, most notably by helping to achieve ethnic minority status for Irish Travellers in 2017.
What are the specific healthcare needs of their children?
It is important to remember that most Traveller children are healthy. Ninety per cent of Traveller children have no chronic health issue. Asthma accounts for 70% of those that do a have one. However, there is a range of genetic and metabolic disorders that are significantly more common in the Traveller population.
A study by Lynch et al in 2017 catalogued these disorders for the first time. Most clinicians working in Ireland are familiar with the increased incidence of these disorders in the community. The aim of the paper was to create a resource for clinicians who are less familiar and to ease forming a differential diagnosis and aid targeted testing. They identified 104 disorders, 90 of which are autosomal recessive. The 3 most common disorders and their carrier frequency are listed below.
The catalogue of disorders is available through the publication below:
Lynch SA, Crushell E, Lambert DM, et al Catalogue of inherited disorders found among the Irish Traveller population Journal of Medical Genetics 2018;55:233-239.
It is unlikely you will remember all of these conditions! Many of these disorders will present in the neonatal period. If you have a sick or septic baby from an Irish Traveller background you must consider metabolic and other rare diseases and investigate and manage appropriately.
These disorders are often incredibly rare, and challenging to diagnose and manage unless you are working in a centre familiar with them. Thankfully, help is at hand, an expert advisory network on the rare conditions affecting Irish Travellers is available on Orphanet.
How can I help them?
By having an understanding of the conditions that more commonly affect Irish Travellers you will be better prepared to diagnose and treat them. In particular, you should have a low threshold to perform metabolic investigations in an unwell neonate. If they have a rare disorder and you are seeing them in ED with an acute issue have a very low threshold to speak to their specialist directly.
Awareness of their culture and social situations will allow you to provide more empathetic, directed care and to put yourself in their shoes. Awareness of their home environment will help with discharge planning, particularly in children with complex needs.
A sensitive approach to literacy difficulties may help when providing patient information leaflets, discharge paperwork, prescriptions or when seeking consent.
Are there any specific differences in the provision of their healthcare in Ireland?
Paediatricians in Ireland will generally be familiar with many of the rare conditions above. Indeed, it is not unusual for a General Paediatrician to look after the only family in the country with a particular condition. The National Centre for Inherited Metabolic Disorders (NCIMD) and The National Clinical Genetics Services are located in Dublin and are the tertiary centres for the country. They look after many conditions that are rarely seen elsewhere in the world and would be a fantastic place for an international fellowship!
The newborn screening system in Ireland screens all newborns for 8 (relatively) common disorders, see below.
A major difference to other newborn screening programs is that there is targeted screening of children born to Irish Travellers for galactosaemia. These children are commenced on soy formula at birth until a Beutler Test can be performed to rapidly rule out galactosaemia. If negative, they can then commence normal infant formula.
The development of a genetic panel and carrier testing for Irish Travellers has been discussed for some time. Although technically feasible, there are complex issues surrounding this which have limited its progression to date. Irish Travellers can be very confidential about their family history and genetics, any future work in this area needs to be addressed sensitively.
You thank your registrar for their thorough and intriguing discussion on Irish Travellers and you resolve to use your new cultural awareness to improve your care of both Irish Travellers and other ethnic minorities in the future.
References
All Ireland Travel Health Study 2010
Education and Travellers [Internet]. [cited 2022 May 30]. Available from: https://www.paveepoint.ie/wp-content/uploads/2015/04/Factsheets-Pavee-Point-EDUCATION.pdf
Lynch SA, Crushell E, Lambert DM, Byrne N, Gorman K, King MD, et al. Catalogue of inherited disorders found among the Irish Traveller population. J Med Genet [Internet]. 2018 Apr 1 [cited 2022 May 30];55(4):233–9.
McGorrian C, Frazer K, Daly L, Moore RG, Turner J, Sweeney MR, et al. The health care experiences of Travellers compared to the general population: The All-Ireland Traveller Health Study. J Heal Serv Res Policy [Internet]. 2012 Jul 1 [cited 2022 May 20];17(3):173–80.
O’Reilly P, Jenkinson A, Martin T, Stone G, Power B, Murphy A. G294(P) Health and disease in children of the “ irish traveller” community. Arch Dis Child [Internet]. 2018 Mar 1 [cited 2022 May 20];103(Suppl 1):A120–A120.
Robinson L. BREASTFEEDING IN THE GYPSY, ROMA AND TRAVELLER COMMUNITY [Internet]. [cited 2022 May 30]. Available from: https://abm.me.uk/wp-content/uploads/Mag12-featured.pdf
