Trust is the foundation for responsive and fair health systems
Informed Responses. Recovery for All.
Health care is a personal pursuit as well as a public one. At both levels, trust is a key component — trust in the individual care providers and trust that the health system, public health authorities and political leaders are pursuing the good of all. This invisible, yet integral, ingredient for strong, responsive and fair health systems is often fragile, contested or missing, particularly among disadvantaged groups that suffer historical and systemic bias. In the face of crises such as the COVID-19 pandemic, damaged trust has resulted in ineffectual public-health campaigns, proliferation of misinformation, widespread illness and health systems stretched to the brink of collapse.
In a recent study of 18 Guatemalan municipalities with large Indigenous populations, community leaders reported that roughly half the residents rejected mask use or social distancing as preventative measures against COVID-19. Conducted by the Center for Studies of Equity and Governance in Health Systems (CEGSS), this research also found that vaccines are frequently mistrusted or seen as unnecessary. It is important to note that these individuals have not necessarily adopted an anti-vax stance; rather they are skeptical of a new vaccine, with limited information available to them in their local language. Guatemala is not alone. Most countries have experienced varying degrees of hesitancy toward public-health measures through the multiple waves of COVID-19 infections.
In many low- and middle-income countries, where health systems are already overstretched and underfunded, pre-existing deficits of trust are arguably more overt among disadvantaged groups such as Indigenous peoples, refugees, disabled people, lesbian, gay, bisexual, and transgender communities, youth and women. Those belonging to one or more disadvantaged group need additional and tailored attention, especially during crises.
Trust is a central feature cutting across the research priorities outlined in the UN Research Roadmap for the COVID-19 Recovery. This roadmap provides a framework for how research and science can support better socio-economic recovery and a more equitable, resilient and sustainable future. Within the framework, trust appears explicitly in relation to engaging communities to build trust in health systems and services, ensuring public-health leaders effectively communicate to different populations and measuring to what extent marginalized and most-impacted populations are engaged in designing and implementing solutions.
Hardships brought on by the COVID-19 pandemic highlight how existing inequalities and prevalent discriminatory behaviours, which tend to go under-recognized or be ignored by health systems and service providers, can further damage people’s well-being and dignity. The fraught relationships can erode trust and lead to suspicions about malicious or manipulative motives driving public-health directives such as physical distancing, handwashing and vaccination.
Attention to marginalized groups and community engagement needed
The research conducted by CEGSS is part of a larger IDRC-funded initiative that is generating evidence on measures and strategies to reduce COVID-19-related health risks for refugee, displaced and migrant populations during and after the pandemic. The team has found that Guatemalan public-health messages about COVID-19 are not tailored to diverse communities, including those with large Indigenous populations. The result is poor uptake of preventative measures.
For example, in many Guatemalan municipalities, very little information about COVID-19 prevention practices and services is provided to local Indigenous populations in their own languages, even though language is key to building trust in health-care providers and services. These communities also host migrants with different experiences of vulnerability and oppression. Messages have not been targeted for distribution to these specific sub-groups, and there have been few partnerships with community leaders to improve engagement with all local community members. In a country where nearly 20% of the population cannot read or has had no formal schooling, tailoring public-health messages to ensure inclusion and language appropriateness is essential.
The disconnect between official public-health communications and the vulnerable communities in need of information has resulted in the disregard of COVID-19 prevention measures and skepticism or outright distrust of public-health efforts led by the Ministry of Public Health and Social Assistance. In fact, only a third of interviewed people living in the rural municipalities included in the project reported having seen or heard any public messaging from official pandemic prevention campaigns. The lack of culturally relevant official information has allowed fear and misinformation to take hold and grow.
Similarly, the Kukaa Salama (Staying Safe) research project in Uganda, led by the University of Toronto in partnership with the Young African Refugees for Integral Development, has found high levels of health system mistrust among refugee youth. Uganda hosts more than 1.4 million refugees, the highest number of any country in sub-Saharan Africa. This refugee population includes a large youth segment. Urban refugee youth face high levels of poverty and unemployment and live in overcrowded and poorly ventilated conditions. Refugees — and in particular the youth — are often marginalized for a multitude of reasons such as country of origin, identity, age, sexuality, income and occupation. They have both lost their homes and must now reside in countries where they may be unwelcomed or only grudgingly accepted. Building trust among youth is notoriously hard in such settings, where they already feel alienated.
Communication of COVID-19 prevention and safety measures to Uganda’s refugee population has not been effective nor has it been translated into languages spoken by refugees. As in Guatemala, in the absence of persuasive, culturally appropriate and age-specific messaging from credible sources, misinformation distributed through various channels, including social media, has shaped opinion and spread fear. Only 18% of youth study participants said that they were very likely to get vaccinated, and many participants worry that masks will harm them, thus revealing the link between low absorption of public-health information and individual health behaviours.
Addressing mistrust through appropriate language and trusted channels
The Kukaa Salama project has identified several factors that can improve health messaging and help increase trust in public-health efforts and vaccine acceptance. These include taking sociocultural beliefs and norms as well as age into account and tailoring COVID-19 services for refugee youth. The acceptance of vaccines can be improved by clearly addressing vaccine safety and the benefits to individuals and the community. The Ugandan research team is putting these approaches into practice by developing and distributing a comic book in five local languages that speaks directly to real challenges and aspirations of refugee youth in Kampala in an age-appropriate format. In addition, the project is testing the impact of an online community created specifically to educate refugee youth on COVID-19 prevention. Engagement levels with refugee youth was high throughout the intervention, with close to 90% of the participants staying actively connected with the online group.
The reception of the measures tested in Guatemala is equally promising. CEGSS has designed and is implementing a capacity-building program targeting Indigenous populations. The program combines a written manual and short videos for mobile phones, voice and text interaction through mobile phone chat groups and small face-to-face workshops. Local community leaders who have received the COVID-19 vaccine have given video testimonies of their initial misgivings and subsequent change of heart thanks to the approach used and information provided by CEGSS. They are now encouraging others to get vaccinated. These videos are being distributed digitally to the entire network of volunteer outreach workers for wider dissemination and influence.
The research in Uganda and Guatemala speaks directly to targets articulated in the UN Research Roadmap for COVID-19 Recovery — through a focus on sustained community engagement, identifying gaps in public-health communication practices and embracing co-design processes for the interventions. Although working with very different populations, these examples demonstrate that trust can be rebuilt through informed public processes and empowered, culturally and age-appropriate local engagement. But building and nurturing trust must be a continuous process, fully integrated in health systems and community practices. It requires early, ongoing investment that can yield undeniable dividends.
COVID-19 has afforded an opportunity to rethink and rebuild trust in health systems. By strengthening that trust now, health systems can remain responsive and resilient for the remainder of this pandemic and in the face of other large-scale health challenges to come.