Marián Pecha (Roma health mediator), František Turták (coordinator of Roma health mediators), and Ondrej Sameľ (Roma health mediator)
In Slovakia, cervical cancer claims the lives of approximately 200 to 230 individuals each year. This alarming statistic is primarily attributed to a low rate of human papillomavirus (HPV) vaccination and insufficient participation among women in preventive gynaecological examinations, including cervical cancer screening. Moreover, stark disparities exist among socio-economic groups, with profound health inequities manifesting within marginalized Roma communities. Here, the invaluable contribution of Roma health mediators comes into play. Roma health mediators, both men and women, are trained to overcome barriers and build confidence in health communication with marginalized Roma communities, particularly around sensitive topics.
Understanding the context
Roma living in marginalized communities often experience discrimination, generational poverty, and limited access to education, employment, housing, and public services, including healthcare. These challenges lead to low participation rates in screening programs, a low HPV vaccination rate, and delayed treatment seeking. The pervasive social exclusion and discrimination have cultivated a sense of mistrust towards external influences, resulting in a preference for guidance from within their own community. This presents significant hurdles for initiatives aimed at promoting behavioural change, particularly in increasing HPV vaccination rates. Consequently, effective communication and trust-building require collaboration with established community intermediaries.
In this context, “Healthy Regions” (known as “Zdravé Regióny” in Slovak) – a contributory organization of the Ministry of Health of the Slovak Republic, is dedicated to reducing health disparities within marginalized Roma communities. The RIVER-EU project shares a similar objective. Together, our joint efforts are focused on improving adolescents’ access to vaccination services, with a specific emphasis on addressing disparities in the administration of the HPV vaccine. By empowering Roma health mediators and working in tandem with communities, we aim to bridge the healthcare gap, enhance trust, and make vital strides towards achieving health equity for all.
Working as a health mediator, caring for underserved groups
Working tirelessly as health mediators for underserved communities, Roma health advocates in Slovakia exemplify charisma and dedication. Their role extends far beyond that of mere health assistants; it involves an unwavering commitment to the well-being of their clients, 24/7.
František Turták, the Roma health mediators coordinator in Košice who oversees more than ten municipalities with marginalized Roma communities, explained the multifaceted nature of their responsibilities. These encompass monitoring client appointments, ensuring essential vaccinations, and promoting healthy lifestyles. In essence, they possess an intimate understanding of the health dynamics within their local communities.
Without a doubt, Roma health mediators are indispensable figures who, through close collaboration, professional training, and addressing vaccine-related concerns, play an instrumental role in raising awareness about HPV vaccination and bolstering its acceptance within marginalized Roma communities.
Among these dedicated individuals is Marián Pecha, a local Roma community member employed by Healthy Regions. Trained as a health mediator, he collaborates closely with local family physicians and possesses an intimate knowledge of his community. When asked about his role, Marián articulated:
“This job is not about income or having a job position. It is something that you do with passion. You are devoted to this work because you have to communicate with people and listen actively. If you do not have the heart, empathy, and dedication to understand the situations that the community is going through, then you cannot do this work”.
From Issues to Solutions: Tackling HPV Awareness and Misinformation
Conversations about HPV rarely find their way to dinner tables or casual discussions, and awareness often comes too late. František explains: “Before RIVER-EU, the topic of HPV was not present in marginalised Roma communities. Roma did not have this kind of information or even training. If they did, it was because somebody in the family was diagnosed with cervical cancer.” The abbreviation HPV is not known in the communities. It can be confused with HIV, which we encountered in conversations in marginalized Roma communities. When people sometimes come across the abbreviation HPV on leaflets, they may feel that it does not apply to them and are therefore not interested in further information. In some regions, like the one where František works, there had been no prior awareness-raising efforts on HPV, although other regions had begun some initiatives.
Yet, the absence of information represents just one facet of this complex issue. Another layer involves rampant misinformation. Marián points out that, prior to COVID-19, vaccinating people within the community was not a challenge. However, at present, there’s a significant lack of trust in vaccines across the board.
A recent study, “Prevalence of Health Misinformation on Social Media: Systematic Review” underscores the pervasive link between health misinformation and social media, particularly regarding vaccines, pandemics, and communicable diseases. This study also identifies the presence of fake profiles that inflame debates and discussions, eroding the potential for consensus on vaccine effectiveness and safety. This phenomenon is especially visible in the context of vaccines like HPV, measles, mumps, rubella (MMR), and influenza. We noticed this influence also in interviews we conducted in marginalized Roma communities. Since the Covid pandemic, people have been questioning the effectiveness and safety of vaccines more than ever, and their trust towards vaccines is shattered by the conflicting information they encounter on social media.
Solutions for HPV Awareness and Vaccination
Here are potential solutions to address the issues of HPV awareness and vaccination:
Most important: Start talking about it! Starting the conversation is indeed crucial, as Marián and František emphasize.
Potential solutions
- Education within the community:
- Educate people in the field: Ensure that healthcare providers and community leaders have comprehensive knowledge about HPV awareness, transmission, prevention, and the importance of vaccinations.
- Key messages: Develop clear and concise messages about HPV awareness that can be easily understood by the community.
- Promote positive actions: Encourage community members to take proactive steps in managing their health, such as using local health services and consulting a doctor with any health concerns.
- Community Engagement:
- Identify and empower leaders: Collaborate with influential figures within the community, such as Roma health mediators, school principals, and municipal leaders, to disseminate information and create awareness about HPV.
- Educational sessions: Organize educational sessions within the community to impart knowledge about HPV, its risks, and preventive measures.
- Repetition of information: Regularly reinforce the information to ensure that the topic becomes familiar and that its importance is fully understood.
- Follow-up vaccination:
- Enhance healthcare provider knowledge: Recognize the challenges faced by healthcare professionals, including time constraints and cultural and linguistic differences, and provide them with specialized training in immunization and immunization communication.
- Utilize educational platforms: Platforms like SEKI (Strengthening Education and Knowledge on Immunization) can serve as valuable resources for healthcare professionals. These platforms offer programs covering a wide range of topics related to vaccines, from development to safety monitoring and patient communication.
Collaborative Efforts to Boost HPV Vaccine Uptake
Increasing HPV vaccine uptake is feasible, but it necessitates a concerted effort involving resources, dedication, and coordinated actions across various community groups and institutions. The partnership with Pavol Jozef Šafárik University (UPJŠ) within the RIVER-EU project has identified essential community leaders and organizations, including Healthy Regions, with the capability to mobilize the Roma community and ensure the successful implementation of interventions. By fostering collaboration, community engagement, and targeted messaging, we can break down barriers to HPV vaccination within marginalized Roma communities. Through these efforts, we can ultimately improve vaccine acceptance and protect the health of vulnerable populations.