In Senegal, official information about hepatitis B is lacking, which drives people to online media. Sorting out true and false information is essential.
The central role of the media in the lives of individuals, correlated with the omnipresence of communication technologies and the instantaneous availability of information, makes it a privileged source for answering questions concerning health problems. Over the years, social media has managed to establish itself as a "reliable" source for sharing information on events and exchange ideas.
In the absence of objective information on a medical problem, these channels appear to be the most accessible sources, less constraining to use than contacting a caregiver. It is so with hepatitis B (due to a virus, HBV) which, despite its estimated prevalence of more than 10% in Senegal, is characterized by a lack of knowledge in the general population: there is no local word for it and it is confused with other infections such as malaria or yellow fever.
This situation shows that, unlike HIV for which formal information has been constructed and framed by law, hepatitis B suffers from a lack of official information. Hence the fact that she remains very widespread but little known.
A significant online press review
How is knowledge about hepatitis B constructed there? What is the information conveyed by the online press about it? How do readers react? To answer these questions, we undertook an online press review of the main Senegalese news sites and analyzed readers' comments.
This study made it possible to better assess the level of information of the people included in the SEN-B project, study of a cohort of individuals living with hepatitis B based at Fann Hospital (Dakar). The data consists of articles and comments from readers selected using the keyword “hepatitis B” on 17 Senegalese news sites, and monitoring via the creation of a “hepatitis Senegal” alert on Google.
A total of 73 social media articles published between 2009 and 2020 were collected (see figure below). Readership counts were collected for 18 articles and 17 articles were commented on. A total of 180 views were recorded and 330 comments collected – which were subject to thematic analysis assisted by Atlas Ti software.
The analysis of the content of these messages reveals that several themes are addressed about hepatitis B.
Social media can behave for example as forms of alerts about a disease "silent" which is ravaging the country.
The majority of articles mention the prevalence (number of cases at a given time/over a given period) of the infection in the general population. These "scary figures" offer an opening to therapists on a plate for their solutions "Miracles".
Most of the providers offering treatments are traditional healers which present traditional therapies from the pharmacopoeia. The speakers most often end up with advice on the foods to avoid (oilseeds) and the diet to adopt (fruits and vegetables).
More rarely, social media articles report treatments from biomedicine. These articles are based on interviews with medical experts. Unlike previous interventions, the modes of transmission, signs and complications of the disease and vaccination are then dealt with. The difficulties (high cost) of medical care are also underlined, but these articles do not give any indication of the treatment (mode and place) that may allow infected people to have recourse to it.
Other articles concern testimonials from sick people about their experiences. The media reports them in a style playing on fear.
People agreeing to testify are most often from the sole association of people living with hepatitis B, Saafara Hepatitis Senegal, including the first president, Ibrahima Gueye, who demonstrated commitment and determination. Testimonies often index treatment difficulties to state responsibility and negligence of the disease:
“Not only are the drugs expensive, but they are also inaccessible. Since 2012, apart from World Hepatitis Day, I have never heard the Minister of Health or the government talk about any fight against this pathology. It's not normal. »
“There is no communication on these diseases. People don't know where to get tested, where to get vaccinated, none of that. It's disgusting in a country like ours. »
“To get treatment, she has to wait for help from her family. “That's why every year I start the treatment, but I don't finish it”. »
The articles also report information on the National Hepatitis Control Program (PNLH) including its history, its achievements and its difficulties, most often based on interviews with the program manager in the context of World Hepatitis Day.
Patients looking for information
Online articles are not the only source of information to consider: the associated comment spaces allow readers to react to publications.
These spaces are often taken over by people living with hepatitis B, when the article deals with the subject. Their interventions result from their own search for information on the subject in a context where few official data are available – even on the spaces dedicated to their disease.
“I need your number please I am in pain because I have been tested positive. »
“I am infected with hepatitis B, I don't know how to cure it. I'm counting on you for the treatment. »
“With hepatitis B can I continue to breastfeed my baby? »
“Good evening, dad, can a pregnant woman take the medication you offer? »
The variety of questions asked reflects the different levels of concern of infected people. The quest for treatment leads some to request appointments or contacts, most often with traditional healers who offer remedies whose effectiveness has not been proven.
In general, no official response is given to the questions asked.
False testimonies to deceive the sick
Because of this lack of feedback, other readers will take advantage of these forums to offer “treatments”, most often based on plants and prayers. Sometimes remote interventions are offered, via telephone contact, WhatsApp or e-mail:
"Cure hepatitis B and C on WhatsApp number 0022997XXXXXX all our products are made from very effective plants without side effects. »
Comments connect readers from different countries. On articles from the Senegalese press, reactions from “healer” or “cured” readers from Benin and Nigeria are thus listed.
The testimonies of people supposedly “cured” of chronic hepatitis B indicating the contact details of their therapists can be likened to strategies developed by healers to attract “clients”. In an interview, a traditional healer even shows analysis reports as proof that he has treated and cured a patient.
A community that helps each other
But the comments are also a space that patients have invested in to create places of interaction that are useful to them.
Thus, some of the virtual therapists who abound are denounced there as scammers: “He sucks, he took 50 CFA from me and I got nothing as a result, I swear. »
In addition to these alerts, these virtual spaces also allow some to try to answer the questions asked. They transmit medical information received or even share the number of the national program for the fight against hepatitis B.
“A doctor told me that hepatitis B is also transmitted through saliva, hence the large number of people affected in Senegal. »
“It is a very contagious disease and most Senegalese are unaware of it, its treatment is inaccessible for the majority of infected people because it is very expensive. »
"For more information contact the National Hepatitis Program 338234496."
A united community is therefore formed online to support itself, in a context where public health policies make little room for hepatitis B. The state is often the subject of virulent criticism:
“In most European countries, the state pays for the treatment of this disease because it is very expensive. »
"How to avoid this disease since we are in a poor country where the State never debates these kinds of disease, it's weird..."
How to remedy the lack of reliable information?
Biomedical information about hepatitis B is scarce in Senegalese social media, leaving room for healers and pseudotherapists. These invest both articles through videos and commentary spaces, where they offer treatments whose effectiveness they boast of, supposedly demonstrated by medical analysis bulletins that they post. How can the reader find his way there?
What the population lacks is objective information. As reported in the literature, there is a cultural confusion between this infection and others, in particular malaria and yellow fever: which exposes the risk of missing out on the appropriate treatment.
Moreover, beliefs that HBV can be transmitted through food and water or by eating together, present in readers' comments, put patients at risk of stigmatization. A risk associated with many infectious diseases.
In addition, the dissemination of certain elements (miracle recipes, sharing of contact with pseudohealers, etc.) raises legal questions, already analyzed in the literature in terms of violation of the law. relating to the practice of medicine and concealed advertising prohibited by the press code in Senegal.
Social media take advantage of the interest given to traditional healers who are called upon both to treat and “dealing with misfortune and misfortune” in a context of inaccessibility to treatments and biomedical information on hepatitis B.
Conversely, in the field of HIV for example, the use of social media has improved communication between a wide range of users, through anonymization and confidentiality in both prevention and treatment. In Senegal, this information was therefore checked very early on by the authorities.
The media therefore offer a very useful opportunity for information and exchange, used by people living with the hepatitis B virus. that it is important to frame the discussions and towarn about misinformation about hepatitis B.
It is therefore necessary, as for HIV, that the authorities, including the national program for the fight against hepatitis, invest in information campaigns adapted to the populations.
These authors also contributed to the design of this article: Diédhiou Mariama, Diop Fatou, Ramirez Mena Adrià, Tine Judicael, Ndiaye Amady, Fortes-Déguénonvo Louise, Seydi Moussa, Wandeler Gilles and the SEN-B study group.