Irish Travellers' Cancer Awareness and Engagement With Prevention, Screening and Early Diagnosis: A Qualitative Study of Barriers and Enablers.

IF 3.4 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES
Kate Frazer, Regina Joye, Patricia Fitzpatrick, Reuel Jalal, Mary Brigid Collins, Lynsey Kavanagh, Abigail Murfitt, Brigid Quirke, Una Kennedy, Triona McCarthy, Maria McEnery, Aine Lyng, Patricia Fox
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Abstract

Background: Irish Travellers are a distinct minority ethnic group with a long tradition of nomadism on the island of Ireland. Travellers have a significantly reduced life expectancy and experience greater health inequalities. Limited evidence describes how cancer awareness and engagement with prevention, screening and early diagnosis are shaped by structural and service contexts.

Methods: This qualitative study was undertaken as part of a larger multi-method study co-developed with the Health Service Executive, National Cancer Control Programme, National Social Inclusion Office, and Pavee Point Traveller and Roma Centre- a human rights advocacy and Irish Non-Governmental Organisation (NGO). The study aimed to understand cancer awareness and attitudes among Irish Travellers, identify barriers and enablers to cancer risk reduction behaviours and early diagnosis of cancer. In-person interviews were completed with 22 adult Irish Travellers (18 individual interviews and two group interviews with two participants each) and were transcribed verbatim and analysed using collaborative reflexive thematic analysis.

Results: Four themes described the interactions between everyday structural disadvantage, culture, privacy, fear and family roles; systems-level barriers; and Traveller-led and service-level enablers. Awareness did not always translate into an opportunity to act. Racism and discrimination, literacy barriers, living conditions, limited service choice, inaccessible communication and inflexible appointment systems constrained engagement. Pride in Traveller identity, trusted relationships, Traveller Community Health Workers, accessible information and culturally safe services supported engagement.

Conclusions: Improving cancer awareness requires more than individual behaviour change. Equitable engagement with prevention, screening and early diagnosis depends on anti-racist, accessible and flexible mainstream services developed in partnership with Travellers and their organisations. Traveller Community Health Workers are a major strength, and their expertise should be harnessed within health systems.

Patient and public contribution: The study was co-developed with Pavee Point Traveller and Roma Centre, who are represented as co-authors on the paper and were members of the study working group. They took part in all aspects of the study, including providing anti-discrimination training, recruitment, interpretation of findings, and providing lived-experience expertise throughout the drafting of the paper.

爱尔兰旅行者的癌症意识和参与预防,筛查和早期诊断:障碍和推动者的定性研究。
背景:爱尔兰旅行者是一个独特的少数民族,在爱尔兰岛上有着悠久的游牧传统。旅行者的预期寿命大大缩短,面临更大的健康不平等。有限的证据描述了癌症意识和参与预防、筛查和早期诊断如何受到结构和服务环境的影响。方法:这项定性研究是与卫生服务执行局、国家癌症控制方案、国家社会包容办公室和人权倡导机构、爱尔兰非政府组织帕维波因流浪者和罗姆人中心共同开展的一项大型多方法研究的一部分。该研究旨在了解爱尔兰旅行者的癌症意识和态度,确定癌症风险降低行为和癌症早期诊断的障碍和促进因素。对22名成年爱尔兰旅行者进行了面对面访谈(18个个人访谈和两个小组访谈,每个小组访谈两名参与者),并逐字记录并使用协作反身性主题分析进行分析。结果:四个主题描述了日常结构性劣势、文化、隐私、恐惧和家庭角色之间的相互作用;系统性障碍;以及以旅行者为主导的服务水平推动者。意识并不总是转化为行动的机会。种族主义和歧视、识字障碍、生活条件、有限的服务选择、难以获得的通信和不灵活的预约制度限制了参与。对游民身份的自豪感、可信赖的关系、游民社区卫生工作者、可获得的信息和文化上安全的服务支持了参与。结论:提高癌症意识需要的不仅仅是个人行为的改变。公平参与预防、筛查和早期诊断取决于与游民及其组织合作开发的反种族主义、无障碍和灵活的主流服务。游民社区卫生工作者是一个主要力量,他们的专业知识应在卫生系统内得到利用。患者和公众贡献:该研究是与Pavee Point Traveller和Roma Centre共同开发的,他们是论文的共同作者,也是研究工作组的成员。他们参与了研究的各个方面,包括提供反歧视培训、招聘、解释研究结果,并在整个论文起草过程中提供实际经验的专业知识。
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来源期刊
Health Expectations
Health Expectations 医学-公共卫生、环境卫生与职业卫生
CiteScore
5.20
自引率
9.40%
发文量
251
审稿时长
>12 weeks
期刊介绍: Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.
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