How can ICT be used to support people living with HIV in Burkina Faso?

Focus on ISS
Afbeelding 

The rapid uptake of mobile phones across the developing world in recent years has inspired a host of innovative concepts for how these devices can be harnessed to promote public health. In this context, the potential of mobile devices to promote healthy behaviours and facilitate health service delivery looms large. However, existing evaluations about the impact of ’mobile health’ (mHealth) interventions show rather mixed results.

SMS intervention service

In order to better understand the possible short- and long-term impacts of mHealth, ISS set up a large randomized controlled trial. From 2014 to 2017 we implemented a short message service (SMS) reminder system to support HIV/AIDS patients in Burkina Faso. Our SMS intervention is the first to evaluate a sample of participants that is nationally representative. The representativeness of our study resulted in a large sample: more than 3,800 patients on antiretroviral treatment participated and were randomly assigned to an SMS intervention or control group. Those participants enrolled in the intervention group, received a weekly SMS reminding them to take their antiretroviral medications. The control group did not receive SMS messages.

We conducted a baseline and three follow-up surveys over a two-year intervention period, allowing us to go beyond the assessment of short-term impacts. We reported the outcomes on patients’ responses at 6, 12 and 24 months of receiving SMS messages. Our findings show that adherence, retention and health outcomes are not affected by the intervention. We do, however, find positive impacts on psychosocial well-being, this effect tending to be most pronounced in the short run. Interestingly, for happiness, expected future happiness, faith in life, not being worried about the risk of falling ill, not feeling alone, and concerning forgiveness as important, we also find long-term effects. According to the qualitative research that we undertook along with the quantitative analysis, beneficiaries of the intervention highly value the text messages because they ‘make them feel good’. The recipients see the messages as encouragement and emotional support. In the words of the survey respondents themselves:

‘I can wake up in the morning and be disappointed in life, because of my status. But when I receive the message from the association I get encouraged to
take my drugs.’ (beneficiary)

‘The messages give me courage and they remind me to take the drugs.’ (beneficiary)

‘When the message comes it makes me happy, because the message tells me that my life is important for somebody. Taking the drugs is for my own good, it makes me feel more healthy.’ (beneficiary)

‘One lady whose husband died was rejected by family members, but now, with the SMS, she got to know that even if your own family can reject you, there are some other people/family who care about your well-being. So the SMS are important.’ (surveyor)

‘Some people used to be disappointed in life, but now with the SMS, people feel that they are not alone, that there are some people that are with them.’ (beneficiary)

‘When I receive the message, I know that the doctors don’t hate me, but they care about my life, they care about me and they love me.’ (participant 1 of a focus group)

‘If someone doesn’t like you or love you, they will not remind you to take the drugs.’ (participant 2 of a focus group)

ICT literacy

While these impacts are encouraging, we also made an important observation that is largely undiscussed when SMS interventions are put in place in developing countries, namely ICT literacy. Not all survey participants knew how to operate their phones properly: some could only receive calls, others could receive and make calls, and many were unable to find the inbox and to open a message when we asked them to show us the messages they had received from the project. The awareness of the SMS intervention was therefore lower than the intended outreach. To give an impression of the lack of ICT literacy, we again let the beneficiaries talk:

‘I mostly use the phone to pick up calls; I can’t do anything else with it, only pick up calls.’ (beneficiary)

‘I don’t know how to use the phone. I never call, but I receive calls.’ (beneficiary)

‘My previous phone broke down and I don’t know how to operate my new phone. I knew how to operate the old one, but couldn’t open the inbox. I was able to make calls and pick up.’ (beneficiary)

‘I can make calls, I can pick up calls, I don’t need someone to assist me with that. I can access my message box, but don’t know how to remove messages.’ (beneficiary)

‘It is my wife who opens the SMS for me. I don’t know how to operate the phone.’ (beneficiary)

Policy lessons

What do we learn from this research for development policy?

  • First, it is indeed the case that SMS messages are a costefficient tool to keep in touch with patients and reach remote populations. However, this tool might be even more effective if voice messages could be sent or a two-way interaction could be established.
  • Second, our experience shows that People Living with HIV (PLHIV) do not need reminders to take their medication on time: they can programme the alarm clock on their mobile phones or ask others to programme the alarm for them. What is needed is support, and SMS messages can be a means to provide that from a distance and for difficult to reach populations.
  • Third, in the current surge of mHealth we need more studies about ICT literacy. Most interventions assume that the potential participants are able to make use of the SMS services on their mobile phones. Yet our research showed that many people cannot even find the inbox on their phones. Thus, we might overestimate the possible gains from ICT interventions if we continue to neglect issues of ICT literacy.
  • Fourth, the SMS intervention did not affect the standard measures of medical well-being, which are retention, adherence and health biomarkers, but it did have positive impacts on psychosocial well-being. These contrasting findings highlight that health policies should not narrowly focus on biomarkers and the medical aspects of health, but also consider subjective aspects of well-being. In developed countries there is an increasing awareness of psychological needs but too often health interventions designed for developing countries narrowly focus only on the medical and physical aspects of health. Thus, we advocate for a rethinking of health policies and health policy goals in developing countries towards a more comprehensive concept of health that combines physical and psychosocial aspects.

What next?

Is this the end of the project? No. Our results so far have
further spurred our curiosity. There is so much more we want to learn in order to understand and support PLHIV even better. If psychosocial well-being can be affected by text reminders, what about preferences, choices and tastes: can they also be affected? Economists generally think that preferences are stable over time. Time and risk preferences in particular are assumed not to vary. Yet there is still little empirical evidence that this assumption is reasonable. Public health and psychology literature recognises a phenomenon called response shift: this phenomenon suggests that as a response to the diagnosis of a life threatening disease such as HIV, patients change their internal reference points, values, perceptions and preferences. We think that it is very important to understand whether such mechanisms are indeed at play in order to better target patients who initiate antiretroviral treatment.

In our continued research efforts with the Burkinabe PLHIV, we have assessed, with the help of experimental games, to what extent risk, time and altruism are a function of disease progression, on the spot self-reported well-being, and psychosocial support. We conducted four rounds of risk, time preference and altruism games among 336 PLHIV over a period of 12 months. Our results suggest that there is little stability in preferences and that risk-taking and altruism are linked to various physical and psychological covariates. The study contributes to a growing body of literature showing that changes in the reference points and preferences of vulnerable populations have to be taken into account by policy makers and support programmes since these changes are likely to affect the uptake and thus effectiveness of social programmes.

But we believe that even more can be done. If individuals change their internal reference points due to a negative shock (such as contracting HIV), they might also respond to a positive shock. Currently, we provide unconditional cash transfers to a randomly chosen sub-group of individuals to help them make ends meet. After two rounds of follow-up experimental surveys we will assess whether such a positive shock can also alter preferences. We very much look forward to gathering the data and to learning more about PLHIV so that we can support them even better in the future by designing the most appropriate policies.

Image above:
Focus group discussion.
Credit: Boundia Thiombiano

Curious about our work? Contact Natascha Wagner: wagner@iss.nl.

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