Launch of landmark national Traveller research on cancer

The first national study on cancer awareness, attitudes and access to health services among Travellers in Ireland has been published.

The co-designed study was led by University College Dublin in partnership with Pavee Point Traveller and Roma Centre and the HSE National Cancer Control Programme. It was supported by local Traveller organisations/Traveller Primary Health Care Projects around the country.

The research draws on a survey conducted with 483 Travellers, as well as in-depth interviews with Travellers and healthcare professionals. Traveller Community Health Workers played a central role in research design, data collection, supporting recruitment and analysis.

The study highlights that 36 per cent of Travellers said they had been diagnosed with cancer and 42 per cent said a family member had cancer. It noted significant barriers to cancer prevention, early diagnosis and access to mainstream health services.

Racism and discrimination – within health settings and in wider society – are among the key barriers for Travellers accessing services. This was acknowledged by Travellers and health service providers.

The impact of social determinants of health (poor accommodation, poverty, racism, discrimination, education, etc) present challenges for Travellers in relation to cancer risk and engagement with health services.

Some Travellers reported not being able to attend vital screening services due to feelings of embarrassment (21 per cent); fear of results (19 per cent); or because of difficulties accessing post (18 per cent).

Barriers to acting on a potential sign or symptom of cancer include not wishing to discuss symptoms with a doctor’s receptionist (37 per cent); fearing the potential diagnosis (32 per cent); and the possibility of needing additional tests (31 per cent).

“Cancer is one of the main causes of death for our community and we are dying at a faster rate compared to the general population. The research reinforces what Traveller Health Workers know, the fact that racism, discrimination, poor living conditions, low literacy levels and other social determinants of health, combined with lack of culturally appropriate health services are costing Traveller lives,” said Ms Mary Brigid Collins, Coordinator of the Primary Health Care Programme at Pavee Point.

At the same time, the research identified important strengths and enablers. For example, it found higher rates of uptake of cancer screening amongst Travellers who received an invitation for screening. Some 84 per cent of Travellers reported attending breast screening, compared with 70 per cent in the general population.  Some 88 per cent of Travellers reported attending cervical cancer screening, compared to 75 per cent in the general population. Some 60 per cent of Travellers participated in bowel screening, compared to 46 per cent in the general population

Traveller Primary Health Care Projects are key drivers supporting Traveller access to trusted health information and cancer screening uptake; with 28 per cent of Travellers accessing screening services after talking to a local Traveller Primary Health Care Worker. Health literacy is also positive with many Travellers recognising the signs and symptoms of cancer and understanding ways to reduce risk—particularly when information is presented in clear, accessible formats.

“This important national research yet again endorses the vital role of Traveller Primary Health Care Projects on the ground. They are a trusted source of information for Traveller families, and as a result, Travellers are accessing mainstream screening services at a higher rate than the general population,” said Ms Lynsey Kavanagh, Co-Director, Pavee Point. “It also shows that Traveller health literacy is improving, with the majority of respondents understanding risks, signs and symptoms. However, access and health literacy alone does not automatically translate to better outcomes for Travellers, and we have to ask, ‘why is this the case?’ The report clearly shows that institutional barriers – racism and discrimination – are at the root cause and this has to be seriously addressed.”

The study is available here: https://www.hse.ie/eng/services/list/5/cancer/prevention/nccp-a4-cancer-awareness-traveller-community-72698.pdf