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Summary report: Engaging indigenous populations in infectious disease response programmes
Summary report: Engaging indigenous populations in infectious disease response programmes
Astrid Hasund Thorseth avatar
Written by Astrid Hasund Thorseth
Updated over a week ago

Disease outbreaks are known to affect indigenous populations disproportionately, on a number of different levels. Below we explore the different factors using COVID-19 for the majority of examples, however, many principles hold true for different infectious diseases.

Are indigenous populations particularly vulnerable to infectious diseases?

There are approximately 476 million indigenous people in the world, making up 6 percent of the global population. There are indigenous populations in more than 90 countries worldwide. The World Health Organisation (WHO) defines indigenous populations as “communities that live within, or are attached to, geographically distinct traditional habitats or ancestral territories, and who identify themselves as being part of a distinct cultural group, descended from groups present in the area before modern states were created and current borders defined. They generally maintain cultural and social identities, and social, economic, cultural, and political institutions, separate from the mainstream or dominant society or culture”.

Compared to non-indigenous populations, indigenous populations are particularly impacted by disease outbreaks globally. For instance, when considering the COVID-19 pandemic, indigenous groups have been particularly vulnerable to the virus and disproportionately affected by the pandemic, compared to non-indigenous people. Indigenous women and girls are especially affected; In the United States, indigenous people are 3.4 times more likely to die from COVID-19 than white Americans (adjusted for age). A study by the organisation for Coordination of the Indigenous Organizations of the Brazilian Amazon (COIAB) and the Institute for Environmental Research in the Amazon found that indigenous people in Brazil were 150% more likely to die from COVID-19 compared to the national average rate. In total, 146 indigenous groups in Brazil are affected by the pandemic. In New Zealand, the infection fatality rate was estimated to be 50% higher in indigenous Māori compared to non-Māori citizens. A study in Mexico also found COVID-19 mortality rates to be 68% higher in indigenous populations.

Coordination of the Indigenous Organizations of the Brazilian Amazon (COIAB) and the Amazon Environmental Research Institute (IPAM) are responding to COVID-19 in indigenous communities in the Amazon region. Source: Mercopress.com

Why are indigenous people at increased risk of disease morbidity and mortality?

Indigenous people are not more clinically vulnerable to COVID-19. Instead, they face increased risks due to inequalities created by current and historic systemic racism and discrimination. Systemic racism is ingrained in the economic, social, and political structures of society. It compromises indigenous people’s access to health and education and is a key contributor to why indigenous people continue to experience much poorer health outcomes, including from infectious disease outbreaks.

Racial discrimination and poverty underlie the following list of factors that contribute to the vulnerability of indigenous people. Note that whilst the factors explicitly relate to COVID-19, many principles hold true for other infectious diseases.

Factors related to increased COVID-19 exposure

  • Logging and mining indigenous territories: Loggers and miners’ activities in indigenous territories, whether legal or not, increase the risk of introducing the virus to indigenous groups living in geographically isolated areas. This may contribute to the increased risk of exposure to the virus in indigenous communities.

  • Communal ways of life: Traditional gatherings are often at the core of indigenous people’s way of life. Gatherings for events like marriages, burials, coming of age ceremonies and harvests during the pandemic put the community at particular risk of exposure to COVID-19. In some communities, communal living where multiple families live together in large dwellings is normal but increases the risk of transmission further if anyone living in such dwellings contracts COVID-19. This is also true for other infectious diseases, such as Ebola and tuberculosis.

Factors related to increased severity of COVID-19 disease

  • Increased prevalence of chronic disease: In many countries, rates of chronic diseases (such as respiratory conditions, heart disease and diabetes) are higher among indigenous people compared to non-indigenous people. This results in an increased risk of severity of COVID-19 and various other infectious diseases. The likelihood of having severe outcomes or deaths due to COVID-19 is increased in people with certain pre-existing conditions.

  • Limited access to health services: Many indigenous communities may have limited access to health care, or may face additional barriers in accessing acceptable and appropriate care. This qualitative study in New South Wales highlighted inadequate infrastructure, remote living, anticipated discriminatory attitudes and inadequate communication among key barriers to health seeking. Disparities in accessing health care between indigenous and non-indigenous populations have been well documented in relation to non-COVID-19 health issues and consequently, this results in adverse health outcomes for indigenous populations. The lack of health workers, protective equipment and testing facilities in the villages and territories of indigenous people means disease surveillance and monitoring and response systems may be slow to activate or completely absent in the face of the pandemic.

  • Vaccine gap: There is a discrepancy in vaccine rates between indigenous and non-indigenous populations. Whilst limited access to health services plays a role, other factors include misinformation, government mistrust and discrimination by health workers, all culminating in vaccine hesitancy. As of October 2021, 72% of New Zealand’s population were fully vaccinated, compared to just 49% of the Māori population. There is a gap of more than 30% across Australia, with the discrepancy widening in Western Australia. For instance, a local government area in North-West Australia has reported vaccination rates of 85% in the general population, compared to just 41.4% in the indigenous population.

Vaccination rates in indigenous and non-indigenous populations in Western Australia. Source: The Guardian

Factors related to both increased exposure and severe disease outcomes

  • Limited access to water, sanitation and hygiene: Safe water and hygiene infrastructure are crucial to prevent infection and spread of infectious diseases, including COVID-19. Due to low coverage of sanitation and water services found in many indigenous communities, there may be an increased risk for the spread of COVID-19 in indigenous communities.

  • Remote living: Accessing health services can be challenging for indigenous people in geographically isolated settlements. Indigenous people often inhabit remote regions and isolated areas with limited access to healthcare and inadequate water, sanitation and hygiene infrastructure. In these settings, there may be limited or no testing capacity for COVID-19, there may be challenges for contact tracing and a lack of access to preventative products, such as soaps, masks and cleaning materials. Limited social mobility and practising self-reliance can both increase and decrease the indigenous population's vulnerability to the pandemic. For further information about how to respond to COVID-19 for indigenous populations living in remote areas, read our summary report on responding to COVID-19 in rural settings.

  • Lack of appropriate tools for communication: Due to a lack of communication technologies, information about outbreaks is often inadequate and delayed in indigenous languages.

  • Income and food insecurity: To curb the spread of COVID-19, it is key to implement measures like physical distancing. Such practices may be challenging or impossible to adapt in some settings where indigenous people make a living off traditional lands and territories in subsistence economies.

  • Mistrust: Colonialism has left a legacy of mistrust between governments and indigenous communities. During the colonial era, communities around the world were subject to widespread violence, abuse and forced assimilation perpetrated by governments. For example, indigenous communities in Canada were forcibly segregated, stripped of their land and decision making power, exposed to vaccine preventable diseases and subject to medical experiments. One of the many impacts of these atrocities, along with persistent mistreatment, failure to uphold treaties and discriminatory attitudes experienced by many, is that there is a high degree of mistrust between indigenous groups and regional and national governments. This mistrust may influence the degree to which government guidelines and recommendations are accepted and followed during outbreaks.

Cultural practices and beliefs: Beliefs and practices of indigenous communities are key determinants of health, influencing disease risk and health outcomes. For instance, some groups are firm believers in traditional medicine and might be skeptical of “western medicines”. Government guidelines might also clash with cultural practices; for instance, indigenous communities in Brazil were reluctant to adopt physical distancing during the pandemic, as it conflicted with their “traditional collective way of life”. During the COVID-19 outbreak, there were also instances where religious groups spread misinformation within the community, which drove vaccine hesitancy. The specific needs of indigenous people have not gone unrecognised in the COVID-19 pandemic. Several United Nations’ institutions, departments and working groups issued statements and raised awareness, including the UN Department of Economic and Social Affairs, UN Expert Mechanism on the Rights of Indigenous Peoples, the Pan American Health Organization, UNICEF, Médecins Sans Frontières, Oxfam, The World Bank and more. Comments and editorials have been published in journals. Despite the acknowledgement of the particular vulnerability of indigenous populations in the face of COVID-19, data demonstrates that response and relief efforts have been inadequate, as indigenous people have been disproportionately affected by the pandemic. Unfortunately, these failures have also been witnessed in responses to other diseases. For example, during the 2008 Zimbabwe cholera outbreak – the Apostolic faith group were ostracised and or were blamed as they were less likely to seek health care at a facility, or take oral rehydration salts (ORS), or use chlorine tablets to treat their drinking water (perception it affects fertility). Their burial practices were high risk, involving mass gatherings, touching the body of the cholera victim, food provisions for all guests - resulting in cholera hot spots. The failing – the humanitarian response took too long to understand their social and cultural norms, and respond in a timely, appropriate and respectful manner. After, with devoted time and resources – a greater bond and collect action was coordination between NGOs, local gov, the Apostolic faith group and the wider community.

Why are indigenous populations often left out of outbreak responses?

Colonisation and racism continue to impact indigenous people’s health, resulting in poorer health and social outcomes. Increased rates of poverty, longstanding discrimination, and inequality commonly result in the exclusion of indigenous people from health programs and policies that affect their lives.

Here, we list some of the reasons why indigenous populations are wrongly excluded in outbreak responses or health programming:

  • Not prioritised in outbreak response: Although it is well established that there are major health inequities affecting indigenous populations, they have been left behind in the response to the recent COVID-19 crisis, as they have been from previous outbreak responses. For example, during the Spanish Influenza Pandemic of 1918, the exclusion of indigenous people in the outbreak response had detrimental effects. The Māori people of New Zealand and First Nations in Canada were respectively seven and eight times more likely to die compared to non-indigenous people. During the H1N1 influenza outbreak in 2009, indigenous people in the Americas and the Pacific had 3-6 times higher risk of developing severe disease and death. Aboriginals and Torres Strait Islanders in Australia represented 12.9% of hospitalised cases of the H1N1 virus, even though they make up 3% of the Australian population. Indeed, we have witnessed similar trends globally throughout the COVID-19 pandemic. In the USA, Alaskan Natives and American Indians are twice as likely to die from COVID-19 compared to white Americans. A study at a hospital in Mexico also found that indigenous patients had higher odds of hospitalisation and death from COVID-19, compared to non-indigenous people.

  • Lack of disaggregated data: When reporting on demographic data, indigenous people often do not have an option to select their race or ethnicity, rendering them unseen. Racial misclassification triggers the exclusion of populations from health service responses and coverage. As a result, the impact of COVID-19 on people who may be more vulnerable to discrimination and exclusion may go unnoticed. In April 2020, 80% of US state health departments released racial demographic data on COVID-19, but less than half of these reported explicitly on the impact of the pandemic on Native Americans.

  • Response programmes not delivered in indigenous languages and culturally appropriate ways: A major contributor to the marginalisation of indigenous groups is the lack of culturally and linguistically appropriate information about disease outbreaks. Inadequate information on infectious disease prevention and health care access is already a widespread contributor to poor health among indigenous people, and more so during the COVID-19 pandemic. This can be a particular challenge for indigenous populations who have moved from their traditional lands and now reside in urban areas. While coverage of health care services may be higher in urban areas, the lack of culturally and linguistically appropriate information can still be a barrier for indigenous people living in these settings. Ensuring respect for traditional health knowledge and worldviews is vital for a successful COVID-19 response in indigenous communities. See this report from UN Habitat for a deeper exploration of urban migration in indigenous groups.

  • Cross border living: Indigenous territories are regularly split by international borders, meaning the health needs of indigenous communities in these areas come under the responsibility of two or more countries. In cases such as these, collaboration across borders is recommended to ensure the needs of the populations are met.

What are the secondary impacts of COVID-19 in indigenous communities?

In addition to the increased threats of morbidity and mortality from COVID-19, the pandemic has led to severe consequences for the culture and environment of indigenous populations.

COVID-19 affects elderly people disproportionately. Elders often have crucial leadership roles in the communities of indigenous people and are invaluable reservoirs of knowledge, language, and history, so their passing will result in tremendous impacts on the community’s culture, well-being, and way of life. This immense cultural loss may have devastating impacts on many already threatened and vulnerable communities. Furthermore, in some indigenous cultures, elders are leaders for the conservation of biodiversity, and the potential loss of this ancestral expertise could have catastrophic consequences, as indigenous people have been reported to safeguard up to 80% of the world’s remaining biodiversity.

COVID-19 has also endangered the survival of many languages only spoken by indigenous people and that may not be documented in writing. For instance, linguists were documenting the languages Thiinma and Warriyangga from their last remaining fluent speaker, who is 86 years old, before the work was disrupted by the pandemic and put on pause during a critical moment for the survival of these languages.

In areas where the populations of indigenous people are smaller, an outbreak could have devastating effects on the survival of the community. In India, ten members of the Greater Andamanese tribe tested positive for COVID-19, which could have had potentially devastating effects on the community that consists of only 50 members.

How can indigenous populations be considered within response programmes?

When engaging with indigenous populations in COVID-19 response programmes, the United Nations Human Rights Office of the High Commissioner (OHCHR) recommends:

“Specific rights that are of particular relevance to indigenous peoples during this crisis - both individual and collective in nature - include the right to self-determination, and the right of indigenous peoples to participate and be consulted on measures that affect them, including the requirement to seek their free, prior and informed consent.” and “States and key stakeholders should take into account indigenous peoples’ distinctive concepts of health, which are inextricably linked with the realization of other rights, including the rights to self-determination, development, culture, land, language and the natural environment.”

Indigenous people have shown great resilience in the response to infectious disease outbreaks. During the COVID-19 crisis, we have witnessed indigenous populations turning to traditional knowledge, practices and values, to remain strong and healthy. For instance, communities have drawn on generational knowledge of previous respiratory outbreaks and introduced community level restrictions, produced their own face masks and mobilised to distribute soap and food packages. The use of local food systems and farming has also been invaluable in many settings. It is important to consider the key principles for disease response programming and be familiar with global, national, and regional guidelines for engaging with indigenous populations. However, keep in mind that historically, government-led responses to health issues among indigenous populations have been inadequate, which has led to the mistrust of government efforts by indigenous communities. To avoid repeating these historical failures in your response programme, we suggest that you follow the actions outlined below. Note that whilst the recommendations were produced with COVID-19 in mind, principles and activities can be applied to other diseases.

1. Connect and work with indigenous communities prior to implementation and conduct formative assessments

It is crucial to communicate with indigenous people and to learn from indigenous communities prior to the design and implementation of response programmes. As a part of this process, prior informed consent should be obtained from the community. Therefore, the first step in the response should be to identify indigenous and non-governmental organizations, as well as indigenous community leaders, that know and have worked in the areas where the target population is located, to consult and learn from them. A list of some indigenous organisations around the world is available here. Such consultations, rapid or in-depth, may reduce potential negative effects on the acceptability and effectiveness of the disease response. In South Suriname, a Knowledge, Attitude and Practice (KAP) survey revealed a lack of information about COVID-19 in an indigenous community. From the survey, they learned that the community had received some information, including that they should limit the visitors entering indigenous territories, but not much more guidance was provided. The KAP survey served as a baseline for monitoring activities and to inform the development of materials for their COVID-19 response, such as risk communication materials. Also see this case study from Colombia where indigenous community leaders were successfully engaged and played a key role in the COVID-19 response. Learning from the community should be an ongoing process, repeated as the response and outbreak progress.

2. The response programme should be delivered in a culturally appropriate way, using local language

Information on the outbreak should be timely, accurate, and produced in culturally sensitive formats, using indigenous languages. The below list outlines some considerations that may be taken to ensure programmes and communications materials can be delivered in a culturally appropriate manner.

  • Feature indigenous populations on communication materials (this should be approved by indigenous leaders and pre-tested by age, gender, power holders and the general indigenous community)

  • Document and share the experiences of people from indigenous populations who have had the disease and survived

  • Understand traditional communication channels and utilise these where appropriate

  • Work with elders to identify safe ways to allow for the continued practice of spiritual and cultural practices

  • Train people from indigenous communities to be part of the disease response

The Inter-American Development Bank has developed a list of critical questions to address when designing a culturally and linguistically appropriate COVID-19 response in indigenous communities. Note that these questions could be adapted for other disease responses.

Here are more examples of linguistically and culturally appropriate COVID-19 communication in indigenous communities:

  • In a multi-sectoral collaboration in Colombia, the United Nations Information Centre, the Colombian National Indigenous Organization and the Colombian National Army developed seven radio messages about COVID-19 and distributed them throughout indigenous territories in indigenous languages.

  • In the United States, the Native American Tribe, Pueblo Pojoaque, published a website focused on health information and coordinating the closure and safe reopening of education programmes and activities. They also adapted content from the US Centre for Disease Control to be distributed in the communities.

  • COVID-19 messaging was spread through loudspeaker, radio and TV in indigenous languages in Cambodia to reach indigenous communities.

  • The non-governmental organization CIELO produced a series of short animated videos without text and then added voice-overs in a number of indigenous languages to be delivered in Latin and South America.

Example of IEC videos providing information about COVID-19 in the languages of indigenous groups in Mexico and Guatemala produced CIELO. Source: CIELO

3. Multi-sectoral collaboration and coordination is crucial

To curb the spread of the focal disease, it is recommended that governments and actors work with and for indigenous people, to ensure that no one is excluded from response programmes. This may include implementing measures to ensure increased access to medical supplies, more health workers, tests, treatment and vaccination. Research has found that if health-care services are managed by indigenous people themselves, the quality and use of primary health care is improved, due to culturally appropriate general public services (Study 1, Study 2, Study 3). Including indigenous people in the response team, response coordination committee and government advisor panels, may increase ownership and acceptability in some settings.

Multi-sectoral collaboration has proven to be crucial in the COVID-19 response. The effects of the COVID-19 pandemic in the Amazonian region led the Pan American Health Organization (PAHO) and the Coordinator of Indigenous Organizations of the Amazon River Basin (COICA) to coordinate and release a joint statement, urging countries and actors to collaborate and to provide supplies, medical devices, COVID-19 tests and human resources. The statement by PAHO and COICA especially urged countries to collaborate in regions where indigenous people live in areas by international borders. Some collaborations like these have been implemented successfully to combat COVID-19 in the Amazon region. Two examples of such collaborations include the municipality São Gabriel da Cachoeira, Brazil that demonstrated how multi-sectoral collaboration can help reduce the impact of the pandemic in an area home to more than 20 indigenous ethnicities and the Covid-19 Indigenous Alert, a mobile application launched to aid in collaboration and information sharing among indigenous groups, organisations and authorities in the Amazon Region.

4. Make sure all indigenous ethnicities are reported when collecting data

The data should be disaggregated to include all ethnic group categories represented in the indigenous groups. Data disaggregated by ethnicity should be routinely collected and used to report on the health impact of the focal disease and also the availability of necessary health care resources: testing, health-care facilities and treatment, vaccination and information about the outbreak. It is important to note that questions about ethnicity during data collection should be optional to answer.

What COVID-19 preventative actions can be implemented to reduce transmission in indigenous communities?

Note that whilst this section was written with COVID-19 in mind, principles and activities can be applied to other diseases with similar modes of transmission.

Contact tracing

Whilst there has been a global scale back of contact tracing, The World Health Organisation (WHO) recommends “prioritised contact tracing” in groups who might be disproportionately affected by COVID-19, including indigenous communities. Contact tracing is the process of identifying and assessing people who have been in contact with known and confirmed cases of COVID-19. Tracking infectious disease outbreaks can be challenging in particular circumstances, such as remote communities and informal settlements, due to there being contacts without addresses, locations with no street names, incorrect contact names or the use of nicknames. Contact tracing for COVID-19 in parallel with other infectious disease outbreaks may also make the activity more difficult. Lessons from the Ebola outbreak in the Democratic Republic of the Congo show that even in challenging areas, contact tracing is possible. Contact tracing for COVID-19 has also been conducted successfully in indigenous communities in countries like Brazil, Australia and the United States. Factors that may facilitate successful contact tracing among indigenous communities, include recruiting indigenous contact tracers and utilising technology to update results in real-time. To further reduce stigma and community resistance, smartphone apps can be utilised to aid local contact tracers in their work, and the data collected can be used to improve reporting and surveillance of outbreaks in real-time.

Whether the contact tracers use a mobile application or paper forms for data entry, it is necessary in most cases for the teams to walk from door-to-door to identify and isolate suspected/confirmed cases and their contacts, to break the transmission of coronavirus. General guidance on how to conduct contact tracing is available from the WHO. Specific guidance is also available for the WHO Africa Region.

Collective isolation of indigenous communities

Collective isolation of communities has been implemented in some settings to protect indigenous people against COVID-19. In some cases, indigenous communities such as the Awajún and Wampis in Peru, have implemented traditional practices of isolation and lockdown from the disease, and it is important that these measures are supported and respected. In other areas, collaboration with local governments and organisations have helped facilitate isolation. In cases where “outsiders” need to enter the community, the entry should be agreed and accepted by the community and only staff that are appropriately trained should conduct work in the community during the pandemic.

In the Bolivian Amazon, local government, indigenous leaders and health professionals implemented a COVID-19 prevention and containment plan including contact tracing and isolation of the community. A case study and protocol on their response is available here.

Collective isolation due to COVID-19 is different from indigenous people living in voluntary isolation (without sustained contact with local or global communities). Indigenous groups living in voluntary isolation, who have always chosen to be isolated, are likely to have reduced immunity against common infectious diseases, and therefore, it is crucial that neighbouring communities allow these groups to remain isolated and safe during the pandemic. One such particular threat is illegal miners and loggers entering indigenous land.

Reduced travel into indigenous communities

Minimising or restricting movement by non-indigenous people in, out and through the villages and lands of indigenous people, have been widely applied in order to prevent the entry of COVID-19 in their communities, including in Ecuador and Australia. Such restrictions may be led by the community itself and supported by responding organisations and governments.

Reducing travel and isolation of communities, however, may not be possible in all scenarios. For example, in Kenya, the indigenous Masai are not able to close borders to their territories as this would lead to increased food insecurity in the population. In these cases, working with communities and supporting their decisions, on what measures can be taken and who will implement them, is recommended.

Recommendations for promoting and supporting hygiene practices, ensuring access to affordable water, reducing the risk of transmission in public places (through mask use and physical distancing), reducing social gatherings while encouraging the use of community support systems and further considerations for responding to COVID-19 in rural areas are available here.

Editor's note:

Reviewers: Delmo Roncarati Vilela, Bethany Caruso, Susannah Mayhew, Sian White

Last update: 01.03.2023

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