Report on Cancer Awareness and Attitudes among the Traveller Community in Ireland published

The HSE’s National Cancer Control Programme commissioned a co-designed study led by UCD in partnership with Pavee Point Traveller & Roma Centre on Cancer Awareness and Attitudes among the Traveller Community in Ireland.

The aim of this research is to:

• understand Travellers’ awareness of cancer risk factors and signs and symptoms
• identify barriers and enablers to cancer risk reduction and early diagnosis of cancer, including access to health services and engagement with cancer prevention/risk-reducing behaviours
• assess the impact of the social determinants of health (SDOH) on health-related behaviours.

The research also looked at healthcare professionals’ views regarding the barriers and enablers for Travellers concerning healthy lifestyle behaviours, cancer screening participation, and timely reporting of cancer symptoms.

The research would not have been possible without the Traveller Community Health Workers across Ireland who coordinated and collected the data from 483 surveys and assisted in recruitment for the qualitative interviews with Travellers and health professionals.

Dr Una Kennedy, GP Advisor to the HSE’s National Cancer Control Programme, said, “We are delighted to publish this research report on cancer awareness and attitudes amongst the Traveller Community in Ireland. The research provides an understanding of cancer awareness and attitudes among the Traveller community in Ireland as well as barriers and enablers for Travellers engaging with the health system. This is the first study of its kind to be undertaken in Ireland. The research provides baseline data to inform the development and delivery of effective cancer prevention and early diagnosis initiatives, monitor the impact of these initiatives, and support better understanding of policy priorities.”

The majority of respondents agreed that there are actions they can take to reduce their cancer risk. Smoking is well recognised as a risk factor for cancer, 88% of respondents spontaneously citing it as a risk factor. There was strong recognition of ultraviolet (UV) radiation from the sun and sunbeds as a risk factor, with 92% identifying sunbed use and 78% citing sunburn as a risk factor.

Most Travellers know that a lump or a bump, or a changing mole could be a sign of cancer. Other common signs and symptoms of cancer such as an ongoing cough or losing weight were less well recognised by Travellers.

The key enablers for accessing cancer screening were speaking with the local Traveller Primary Health Care Worker (28%), and receiving an invitation to attend screening helps to improve screening uptake (27%).

Lynsey Kavanagh, Director, Pavee Point Traveller and Roma Centre, said: “We welcome the findings of this research which demonstrates very clearly the importance of co-designed and partnership research between Traveller organisations, the HSE and academic institutions. The findings of the report endorse previous research on key challenges for Travellers in access, participation, and outcomes in mainstream health services. Positively, the reports also show improved health literacy and also higher rates of screening amongst Travellers when compared to the general population, which is due to the work of local Traveller organisations/Traveller Primary Health Projects and strong partnerships between projects, NCCP and HSE. Gaps still remain and the report shows that the social determinants of health, including anti-Traveller racism and discrimination, still persist and need to be seriously tackled if we are to improve outcomes. It will be important that the next National Cancer Strategy takes on board these findings and Traveller organisations are actively included and consulted in the development and implementation of the successor Strategy.”

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

Dr Patricia Fox, Principal Investigator on the project / Assistant Professor, UCD School of Nursing, Midwifery & Health Systems, said: “Our findings reveal a ‘whole of government’ approach is required to address the underlying social determinants of health which negatively impact Travellers in the context of cancer prevention, screening and early detection. There needs to be continued partnership with Traveller organisations and Primary Healthcare for Travellers Projects on all initiatives related to the Traveller Community and particularly with reference to increasing knowledge of cancer risk factors and targeted and mainstreaming support for cancer prevention, screening and early detection. Trusted relationships with culturally sensitive, well-resourced healthcare professionals and health services are also key as is employing flexible, innovative approaches in this context.”

Mary Brigid Collins, Coordinator of the Primary Health Care Programme at Pavee Point, said: “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, unnecessarily. The research acknowledges the role of Traveller Primary Health Care Projects in supporting Traveller access to screening services and health literacy; but we need more serious investment in projects matched with mainstream services working with us to improve health outcomes for Travellers.”

Social determinants of health have a significant impact on Traveller Health. Racism and discrimination significantly hinder Travellers’ ability to adopt risk-reducing lifestyle behaviours, participate in screening, and access healthcare. The development of the role of the Traveller Health Care Workers is viewed positively by Travellers and identified as a means to improve Traveller Health.

For more information, see hse.ie/cancerprevention