(PlusNews) – Isaac Nanok religiously collects his antiretrovirals (ARVs) from his local health centre every month, but the information on the packaging is meaningless as he is illiterate.
“All I know is that when I get home, I will take a tablet in the morning and also in the evening. When they are finished, I go back for more,” he told IRIN/PlusNews at his home in northern Kenya’s Turkana region. “I don’t know what is written here on the container, and even the doctor just talks to me in Swahili, which I don’t understand well.”
When he gets an opportunistic infection, Nanok cannot consult the information on the ARV packaging to find out whether it is safe to take certain drugs. Health centres are not always close enough for a quick consultation, so patients like him risk taking medication contra-indicated for use with ARVs.
Health workers routinely hold counselling sessions with their HIV-positive patients on the need to adhere to the medication and to maintain a healthy diet while taking them, but some health workers say treatment literacy materials translated into local languages or simple diagrams would help improve treatment programmes.
“Normally when a patient comes to the clinic to take their drugs, what I do is to take the container with the drug, count them and then simply tell the patient to take one in the morning and one in the evening,” said Collins Matoke, a clinical officer at a government health facility in Turkana, adding that patients needed more ways to access information to avoid misinformation.
Paul Mburu, a community health worker in Gomongo, an informal settlement in Kenya’s capital, Nairobi, says many illiterate care-givers of HIV-positive children find it difficult to dispense the paediatric ARVs to the children due to their illiteracy.
“You can find an old care-giver who is illiterate trying to, for example, compensate for a missed morning dose by giving a child more drugs in the evening… Such cases are common with people with low education levels… you realize how serious the implication of treatment illiteracy is on treatment programmes,” he said. “Such a person is already setting the child up for treatment failure… The impact can’t be ignored.”
Most of the literature available on ARVs is printed in English or Kiswahili, but in many areas of the country, illiteracy levels are high and neither of the two languages is spoken fluently. According to the Kenya Demographic and Health Survey 2009, in rural Kenya, just 26 percent of the population has a secondary school education or higher; fewer than half can read a whole sentence and 16.7 percent cannot read at all.
The Kenya AIDS Indicator Survey, 2007, reported that many adults who should be taking ARVs but are not cited lack of knowledge on their appropriate use as the reason.
You can find an old care-giver who is illiterate trying to, for example, compensate for a morning missed dose by giving a child more drugs in the evening … Such a person is already setting the child up for treatment failureMaking information more accessible
“When the literature is in a language that everybody understands, even oversights by clinical or medical staff can be compensated for because either the patient or care-giver can read and understand and avoid actions that could create problems for them,” said Mburu.
Andrew Juma Suleh, medical superintendent at Nairobi’s Mbagathi District Hospital, says treatment literacy can also be improved by boosting community healthcare networks.
“Other than just translating the literature about ARVs into local languages, community health workers should be people who are able to speak the native language… because there are those who cannot read even literature written in their native language,” he said.
A 2011 study by South Africa’s Rhodes University recommended that leaflet design should “consider culture and literacy skills… include visuals to enhance appeal and improve understanding, and involve end-users”. The authors also recommended that verbal counselling should accompany written information.
Government officials say they lack the resources to translate the materials into Kenya’s 60-plus languages.
“Access to easily understandable information is critical and would improve outcomes like better adherence, but since there can’t be any standard way of translation, the financial resources to do that immediately might not be easily available, but can be looked at in future programming,” said Ibrahim Mohammed, director of the National AIDS and Sexually Transmitted Infections Control Programme.