We know that effective communication with communities at risk is essential to containing disease outbreaks. Yet people in the latest Ebola response in the Democratic Republic of Congo (DRC) can’t always access the information they need. Even if they can access it, they can’t always understand it. And even if they understand it, they don’t always trust it. Three factors currently limit the effectiveness of health communication in Beni, the town at the centre of the current outbreak:
- The language responders use.
- The content responders deliver.
- The way responders deliver it.
Local health communicators, who speak local languages and are aware of local sensitivities, have a vital role to play in making communication more effective. But they need better support and training to overcome the obstacles to effective community engagement.
These are the findings of a Translators without Borders study carried out in September 2019 with the International Rescue Committee (IRC). TWB conducted interviews and focus groups with more than 200 health communicators, patients and residents in different areas of Beni. Their responses should help to improve people’s understanding and acceptance of Ebola information in the current outbreak. The results should also inform preparedness for the next major disease outbreak.
Communities want information in the languages they speak and understand
Beni residents and even health communicators remain confused about aspects of Ebola and the Ebola response. This is partly because written communication is in French and Swahili, which only more educated people can read accurately. Health communicators told us they often speak Nande with women, particularly older women. Yet the information materials and training they base their communication on are in French and Swahili.
Beni residents speak at least seven languages; other affected areas of eastern DRC are similarly linguistically diverse. Swahili is a lingua franca in the east of the country, but that doesn’t make it an effective language in which to communicate about a deadly disease with people whose first language is Nande, Lingala or Mbuba.
The use of languages and concepts that people don’t fully understand breeds fear and suspicion. In Beni, the combination of a volatile security situation and an alarming disease has created a climate of fear and distrust. Most focus group participants told us that, at the start of the epidemic, they interpreted the use of languages they didn’t understand as a threat. Consequently, they thought Ebola was a weapon of war sent to kill them.
The terminology of the response encourages fear and confusion
Some of the French words commonly used in the Ebola response unintentionally encourage such suspicions. Study participants interpreted the warlike riposte (response, literally ‘fighting back’) as an attack or battle, and vainqueur (survivor, literally ‘winner’) as the victorious party. Earlier findings from the Social Sciences Research Group+Groupe de Recherche en Sciences Sociales, ‘Note d’information – Perceptions des mots et langage de la riposte’ (Goma: GRSS, 2019). raised similar concerns, but responding organisations have not generally changed these language habits.
Distrust discourages individuals from seeking treatment or acting on guidance about preventing the disease. Since the epidemic began, people feel they have been deprived of agency and freedom of choice. The fear of being taken to an Ebola treatment centre or locked in isolation against their will is immense. Health communicators explained that people associate words such as ‘ambulance’ and ‘isolation’ so strongly with death that it is best to avoid using them. Local residents told us the fact medical staff don’t speak their language compounds their concerns: they worry that misunderstandings might result in their being misdiagnosed with Ebola.
Confusion about aspects of Ebola is also linked to the use of specific medical terminology. Responders often use technical terms in French, even when speaking Swahili or Nande. We found that Beni residents misunderstand seemingly simple medical terms in French, like ‘allergic’, ‘virus’ or ‘molecule’. The adoption of English terminology such as ‘swab’ or ‘ring vaccination’ in French multiplies the confusion.
Health communicators identified abbreviations as another common source of confusion. Responders commonly use ETC’ (in French ‘CTE’) for Ebola treatment centre, ‘TC’ for transit centre and ‘EDS’ as the French abbreviation for safe and dignified burials as a convenient shorthand. But their meaning is not always clear to communities, especially when an English or French abbreviation is used in a sentence in Swahili.
Some expressions related to the response are confusing because they suggest different meanings in the local context. The French cas (‘case’) is phonetically similar to the Nande diminutive ka; the word suspect (in English ‘suspected’) is associated with crime. Nande speakers interviewed accordingly understood cas suspect (‘suspected case’) as meaning a criminal of little worth, and were reluctant to be labelled as such. Similarly, ‘contact’ is used for everything from lists of telephone numbers to sexual relations. Even health workers were confused by its meaning in the context of the response.
Women are particularly vulnerable to misunderstanding when communication is unclear. Women are the primary caregivers when someone falls sick, and often the ones to take family members to the health centre. But they are also less likely than men to have completed basic schooling. As a result, their understanding of French terminology, posters in Swahili and basic health information is often limited. Many described not seeking professional care for fear of misunderstandings that could result in misdiagnosis.
Health communicators lack support to translate key concepts
Health communicators struggle to relay critical Ebola information to at-risk communities in ways they understand and accept. They translate unfamiliar concepts from French into local languages in a context of generally low health literacy, and currently without guidance. Many do this with limited understanding of these concepts: study participants called for refresher training on key aspects of Ebola and the response.
Health communicators must also translate blunt or alarming terminology into wording that people won’t reject as disrespectful or distressing. People commonly associate certain words used in the Ebola response with death, and react negatively to them.
Health communicators interviewed had developed alternative phrases for highly stigmatised terms such as ‘isolation’, ‘suspected case’ and ‘Ebola treatment centre’. These alternatives take a patient-centred perspective. They replace concepts of treatment (something the doctor does to the patient) with concepts of healing (in which the patient is the subject not the object). They refer to ‘patients’ rather than ‘cases’. They also offer simple explanations of technical concepts. For instance, one Swahili explanation of contact tracing literally translates as ‘monitoring of all people who have been close to a sick person’.
The result is to humanise technical concepts and make them less frightening and more accessible to community members. Responding organisations can learn from such examples. In the absence of guidance, however, each communicator develops their own explanations. These vary between individuals, and can introduce inaccuracy. For instance, one Nande explanation for Ebola treatment centre was ‘the place where there is healing’. While positive, this could suggest that all patients there are cured.
The combination of patchy understanding, unsupported translation and individual choices of euphemism results in inconsistency and contradiction. Local health communicators understand the local language and local sensitivities, and so find more respectful and acceptable explanations of key concepts. However, they lack a reliable understanding of those concepts in the French original, and support to ensure their translations don’t introduce unintended error and confusion.
Communities want information that meets their changing needs
As the Ebola response evolves, changes in policy and practice raise legitimate questions and doubts. New information seems to contradict what was said before. Communities want explanations, yet often communicators don’t have that information; they simply have new instructions.
Focus groups described the negative impact of a failure to provide credible answers and positive messages on relations with community members. Health communicators voiced distress at the resulting breakdown in trust.
Study participants voiced frustration with information like ‘You have to go early to the Ebola treatment centre to be cured’. They want a more detailed and sophisticated explanation of how the treatment drugs work, and why they were selected. They want to understand why pregnant women are now eligible for vaccination, whereas previously they weren’t. People want details on complex issues to inform their decisions, and they want them presented in what they referred to as ‘community language’ – meaning in a language and style they understand, using words and concepts they are familiar with.
There are positive moves to equip health communicators to provide such answers more effectively. In late 2019, members of the Risk Communication and Community Engagement Partners group developed plain French answers to common community questions. These will be most helpful if they are regularly updated, expanded to provide still more specific answers and made available to all local health communicators.
Study participants also called for more positive messages, recognising the greatly reduced infection rates over time. They are tired of hearing only about the risks, and want reassurance that the end of the outbreak is in sight.
Communities want information delivered in an appropriate and accessible way
How communicators relay information affects how accurately people understand it and how firmly they believe it. Local people and local leaders are more likely to be trusted messengers. Study participants prefer face-to-face communication, where they can ask questions directly. But they also considered various communication tools as a means of supporting that interaction.
Less literate people interpret graphics literally. Accompanying text, only partially understood, provides clues to the content of pictures, not the reverse. Details of the representation, including the use of colours, influence how they are understood. For instance, for study participants yellow or gold symbolises wealth and red symbolises death. For them, posters that use these colours confirm that people are making money out of the ꢁEbola business’. Images that do not reflect the cultural context, such as pictures of women in short skirts or performing burials, create confusion and concern. Focus group participants, regardless of age or gender, value pictorial communication. They called for accompanying text to be in Nande and Lingala as well as French and localised Swahili. They also want numbered pictures to make the sequencing clear, and leaflets they can take home for reference.
In the absence of individual reference materials, posters are an important communication tool, supporting but not replacing verbal explanation. However, many posters in Beni were either hard to read as a result of weather damage, or kept in health facilities where few could see them. Participants called for posters to be laminated to last longer outdoors.
Audiovisual materials from the response archive were popular with focus group participants, but are rarely made available. Film documentaries showing real people and places lend credibility to explanations of processes such as treatment, vaccination and burial. The video we showed a group of young people sparked animated discussion, which could be a basis for addressing rumours and misunder-standings. If communication teams had the equipment to project documentaries, the response could make better use of this resource.
Responding organisations can take practical steps to improve communication on Ebola
The study suggests ways to improve community engagement in both the current and in future disease outbreak responses. In particular, responding organisations should:
- Provide information in local languages, including localised variants of languages such as Swahili and Nande.
- Provide regular training to health communicators in their language on all aspects of the response, and update training materials as policies and practices change.
- Support health communicators to translate key concepts into accessible and accurate explanations in local languages, and develop tools and training that draw on their cultural expertise.
- Use more accessible and patient-centred language, and avoid technical terminology, foreign loanwords and warlike vocabulary.
- Explain the reasons behind policy and practice changes, and provide health communicators with regularly updated plain-language answers to people’s questions.
- Develop detailed, updated graphic and audiovisual materials and test them for comprehension and social acceptability.
Ellie Kemp is Head of Crisis Response at Translators without Borders. The study reported on here was supported by funding from Gilead Sciences, Inc. via the International Rescue Committee and by the H2H Fund, which is supported by UK aid from the UK government. Gilead Sciences, the International Rescue Committee, the H2H Fund and the UK government have had no input into the development or content of these materials.