By Casey Iiams-Hauser and Yanis Ben Amor
Perfection is achieved, not when there is nothing more to add, but when there is nothing left to take away. –Antoine de Saint-Exupery
HIV infection in children occurs most often during pregnancy and labor or post-natally during breastfeeding. While new HIV infections among children have declined since 2002, a staggering 430,000 children were infected in 2008, and 280,000 died during the same year.
Mother-to-child transmission of HIV has been virtually eliminated from industrialized countries, but remains common in Africa. In 2008, for every one child living with HIV in North America and Western and Central Europe, there were nearly 800 children infected with HIV in sub-Saharan Africa. The risk of HIV transmission from mother to child can be reduced from around 30%—the risk without any intervention—to less than 5% through a package of interventions referred to as PMTCT—prevention of mother-to-child-transmission. Even in settings where these packages of intervention are in place to prevent pregnant women from transmitting HIV to their children, the problem of patients coming to only one appointment, but defaulting from the program afterwards and never finishing treatment is a major obstacle in any PMTCT program.
Our project set out to design a mobile phone application to register and follow HIV positive pregnant women to increase uptake of antenatal care services and decrease defaulter rates. The challenge to finding an appropriate solution was twofold: first, to understand from the perspective of the health care workers, pregnant women and mothers what the challenges were in order to determine the best ways to support completion of the program and second, to determine if a technological intervention was the most appropriate tool to aid these processes.
There were two main factors complicating the design of our intervention. First and foremost was the issue of the social stigma of living with the HIV infection. Patients often attend a different health center than the one closest to their household to avoid anyone discovering their HIV status. Community health workers are often not aware of the HIV status of those they are assigned to work with, and some people even choose not to disclose their status to their partner. Any intervention therefore needs to take the utmost care to not disclose, either actively or passively, the HIV status of the people it aims to help. In addition, the system needs to be integrated to allow a patient to receive care at any health care facility without causing a break in treatment.
The second most significant factor was a lack of understanding about the importance of attending antenatal appointments regularly. Oftentimes, appointments are missed solely because the patients don’t always comprehend the value of antenatal care visits, they forget when they were supposed to return, lack access to a calendar or the appointment is postponed due to other more pressing matters which require their attention, as determined through various interviews with pregnant women. This leads to incomplete treatment and increased transmission of HIV infection to babies.
In order to be effective in countering these various issues, the proposed new technological tool needed to respond directly to the needs of the end-users: nurses, community health workers, and mothers-to-be. The solution suggested by the Millennium Villages Project (MVP) team consisted in adding an additional module to an existing piece of software called ChildCount+. ChildCount+ is an mHealth platform developed by MVP aimed at empowering communities to improve child survival and maternal health. ChildCount+ uses SMS text messages to facilitate and coordinate the activities of community based health care providers, usually community health workers (community health workers). Using any standard phone, community health workers are able to use text messages to register patients and report their health status to a central web dashboard that provides a real-time view of the health of a community. Powerful messaging features help facilitate communication between the members of the health system and an automated alert system helps reduce gaps in treatment.
We wanted to create a tool that was responsive to the needs of the people of Sauri, so we went to every health care facility in the cluster and interviewed health care providers, pregnant women and community health workers.
Community health workers voiced concerns about the addition of a new module in general, and the components that they felt needed to be at the heart on any technological solution as they would ultimately be the end-users, going out to the homes of women and children who had not attended antenatal and under-five clinics. Community Health Workers wanted the system to be kept simple and they reinforced the idea that confidentiality was key, not just between the community health workers and the patients (many of them had been entrusted with knowledge of HIV status by members of their community), but also within a household. Many people hadn’t figured out ways to tell their partner their status and discretion was essential to creating an effective patient tracing system.
The feedback from maternal and child health nurses at each clinic added to the overall flexibility of the system: considering many health centers display unique sets of practices and interventions, dates of next appointments were designed to be entered by the nurse rather than the system. Their feedback also improved the quality of data collected, as well as what information needed to be captured by the system to best assist them in reaching the goal of keeping babies born HIV-free. Through an iterative process, a finalized product was then designed that responded to all the concerns and requests of both community health workers and nurses. Mothers of young children and pregnant women were also included in the design to determine reasons for skipping scheduled appointments and concerns relative to home visits.
In the final workflow, a community health worker visits every pregnant woman and every child 18 months and below with an upcoming appointment to remind them when to go to the clinic and makes a follow up visit if they don’t attend. The community health worker does not know the patient’s HIV status at any point. To avoid the problems of stigma against people living with HIV, all pregnant women and children are followed. The messages sent to the community health worker are exactly the same if the patient is HIV+ or – and all patients are followed up in the same manner. Through this feature, not only is the patient’s confidentiality protected, but there are also notable positive side effects, or “collateral benefits.” These include the increased number of women attending at least the recommended four antenatal clinic visits and more children receiving all of their vaccinations at the appropriate time (as all vaccinations are complete by 18 months).
The process begins by collecting demographic information on a form at the front desk of the Maternal and Childhood Health Unit of the Health Center for each new pregnancy. On the first visit to the MCH unit, this information is collected by the community health worker stationed there. This information includes marital status (with the health ID of the husband if available) the number of pregnancies the woman has had and the number of children from that mother currently living with her. This information eventually promotes efforts to offer treatment and support to other family members who may be HIV+.
Following registration, the patient proceeds into the nurse’s office for the initial antenatal visit and further information is collected: the estimated date of delivery, the results of the HIV test, whether blood was drawn for a CD4 count and the date of next appointment.
The system uses this information to prompt community health workers to visit pregnant women shortly before their appointment, and remind them of the value of attendance, and also to have the community health worker go over the pregnant woman’s individual birth plan with her a few weeks before her due date. The system also tracks if patients have missed appointments, and send notices to their community health workers so they can follow up. Once a child is born, the system automatically sets an appointment for their critical 6 week check-up and sends reminders for the child’s appointments up to eighteen months of age. (For more detail, please visit: http://www.childcount.org/modules/pmtct/)
All nine of the health centers in the Sauri cluster are now using this module with more than 200 mothers being traced after the first few weeks and more being registered each day. The participatory design process has left us in the best possible position to help curb loss to follow up and help Sauri achieve its goal of zero percent mother to child transmission of HIV within 2 years.