Sending messages of support to HIV patients

The study involved more than 3,800 people living with HIV across Burkina Faso and was implemented over a period of two years. It was founded by the International Initiative for Impact Evaluation (3ie). The question was whether patients who receive SMS text messages are more likely to stick to their antiretroviral treatment regimens (ART) and whether they experience health benefits. The study provided interesting insights, though the outcome was not what Wagner expected.

Why did you choose Burkina Faso?

“Burkina Faso is one of the poorest countries in Africa, it’s Gross National Income per capita is $1,705. This can make HIV treatment difficult. For example, one of the main challenges in Burkina Faso is limited access to food and nutritional support. But when it comes to HIV treatment, taking your medication on an empty stomach can be painful. Moreover, Burkina Faso is a multilinguistic country. It has more than 70 different languages, some of them are only spoken. In this context combatting HIV comes with its own challenges.

Last but not least, Burkina Faso also has a fairly low rate of HIV prevalence. When people think of HIV and Africa they tend to think of high numbers of cases, with a large part of the population being affected. This is not the case in Burkina Faso.”

What is the reason that you are interested in using SMS text messages?

Mobile health-interventions are high on the agenda of the World Health Organization (WHO). Mobile health has been tested before for people living with HIV. What we observe is that a lot of patients who start antiretroviral treatment (ART) have a hard time to stay on it. Mobile health such as sending text messages, seems a cost-effective and easy way to reach out.”

What is different in your study compared to studies done before?“What is different, is that we did not simply text ‘take your pills’ or ‘go for your appointment’. Our messages were trying to encourage people instead of just reminding them. We implemented religious and family connotations, for example by saying: ‘God loves you, take your pills’. Or: ‘Your family needs you, take your pills’. Only sending the same text every week becomes plain and repetitive. In order to prevent message-fatigue, we opted for messages of encouragement, adding symbolic and emotional meaning to it.

What was the hardest part of doing this research?

“People said: ‘It is nice that you want to send us messages, but we need something to eat…’ In a way, our intervention was only a small way of helping people living with HIV. That was tough. We could not provide them a basket of food every week. Taking into account that we could only send a simple text message, we asked ourselves: ‘how could we do that in the most respectful way?’

Normally if we think of health interventions in Africa, we think of building a hospital, providing equipment, material and other things. These interventions are fairly functional. In this research we explicitly wanted to incorporate a wellbeing-approach. Can we increase the wellbeing of the people living with HIV?”

Why is that important?

“In the Global North, we are very much aware of the role of psycho-social wellbeing. The current COVID-19 pandemic shows us even more how important emotional and psychological wellbeing are.

But as soon as we start thinking about health-related development interventions, we focus very much on the physical aspect of health. Yet, we know from research that there is an interplay between feelings, emotions and physical health. During this research, we discovered that many people living with HIV already found ways to remind themselves to take their pills, for example by setting the alarm on their phone. Thus, our question changed more into: ‘what can messages do on top?’”

And, what could messages do on top of reminding?

“As we implemented the project, we realized that we did not achieve much of an impact on our primary outcomes, namely remaining in care, adherence to the treatment and physical wellbeing.”

Why is that?

“First, retention and adherence to the treatment were already high from the onset. With our intervention we could at most achieve improvements at the top.

A second and related reason is literacy and ICT-literacy. The patients received the support messages without experiencing technical problems but we observed that they could not always open them on their phone or did not understand their meaning. The implicit assumption underlying mobile health interventions is that once a message is sent, the receiver can open and read it.

But it is not that simple. So, one of our findings is that in principle mobile health has potential, but literacy and ICT-literacy have to be taken into account. Remember, there are more than 70  different languages in Burkina Faso. Thus, to be effective, ICT interventions should be accompanied by trainings. But there was another unexpected outcome…”

What was the unexpected outcome?

“We identified that the people who could make sense of the messages, are indeed encouraged by our texts. We found positive impacts on psycho-social wellbeing. People said things like: ‘we feel loved’, ‘we feel valued’, ‘we feel appreciated’.

For me this is one of the main outcomes of the study and we need further research to better understand and unpack. This finding is important also in times of COVID-19 or for refugee camps. Sometimes we cannot help practically. For example, we cannot immediately build solid houses for every refugee in a camp. But sending people messages of support is easy and cheap, and they can make a difference to someone’s wellbeing.”

So, something small like a message, can make a difference?

“Yes, and I think we need more research in that direction. Not only for people living with HIV, but for people living in precarious situations more generally.

After the experiences of lockdown and isolation in the last months, we are at a turning point where we recognize psychological aspects of wellbeing more. We have to move away from purely functional interventions, even in developing countries.

Humans are not only purely functional but emotional beings. Here, a functional technology, ICT, can be used in a meaningful way since it is cheap, travels easily and can reach many.”

*A randomized controlled trial is an experiment that randomly assigns participants into an experimental and a control group. As the study is implemented, i.e. mobile messages are sent to HIV patients, the only expected difference between the two groups is the outcome being studied.