My research in South Africa involves running a support group for HIV-infected mothers via SMS (text messaging.) I need cell phones and hope you can help. Here is where, why and how it will help:
Antenatal care in South Africa, especially the Prevention of Mother-to-Child of HIVTransmission (PMTCT) program, is a perfect illustration of the complexity of HIV as a disease and, more so, the critical need for creativity in strategies to approach this epidemic. Amongst women seeking antenatal care in the country, between 30% to 40% are infected with HIV, most of these women seek care in the public (read “resource-poor, understaffed, overcrowded”) sector. Without proper PMTCT treatment, 30% of these women will have HIV-infected infant; this number rises exponentially in the first year of the child’s life if feeding guidelines are not followed. To put this in perspective, in United States, transmission is less that 1%, evidence that this number is obtainable with appropriate provision of antiretrovirals (ARV), c-sections and bottle feeding.
However, South Africa is our reminder that “medicine” entails more than throwing algorithms and a stocked pharmacy into a clinic. Currently in Southwest Tshwane, where all pregnant women theoretically have access to PMTCT, the transmission rate is greater than 15% (still lower than the national average.) To put this in perspective, in Pretoria alone, 200 babies are born every month with HIV. 200. Babies. One city. HIV.
So the question is, why are these programs failing? Why mothers leaving orphaned children when we have the ARVs to give them? Why are we routinely forcing children born into a life of chronic disease and ARV treatment? Or worse, needlessly watching them die before they reach their second birthdays?
The answer is scattered between society at large, the health care system, the strained clinics and health care workers, and, of course, the affect these things have on the behavior of individuals.
First of all, let us remember that PMTCT, like ARV therapy and highly active ARV therapy (HAART) in nonpregnant persons, is a demanding medical regimen to maintain over a period of time. Not only do the medications often produce harsh side effects and need to be taken multiple times a day, but it also requires constant follow up visits at the clinic during pregnancy and afterward. All of the components of PMTCT, which should be completed on a specific time line, face all the challenges of health care delivery in resource poor settings: lack of transport to visits, impossible waiting times, exhausted staff, problems with continuity and records of care, lack of a system to track patients, communication and education issues, space shortages, etc. These are all system issues being addressed in the Serithi Project (the larger research project I work on) but this is not enough.
Even in a perfect health care setting in South Africa, PMTCT could not function optimally. HIV is still highly stigmatized. Women who disclose their status are often kicked out of their homes or rejected by their families. Individuals do not want to be tested and, even if treatment is available, do not take it for reasons of denial or secrecy. Like other chronic (and fatal) diseases psychosocial factors faced by HIV-positive individuals run deeply, lead to social isolation and make adherence to PMTCT (including going to follow up visits or having their child tested) logistically, as well as emotionally, challenging. Indeed, the work of my preceptors and others have sought to describe phenomena such as stigmatization, disclosure status, social support, depression, self efficacy and coping styles and their possible effects on adherence to HIV treatment regimens in Southern Africa. Not surprisingly, these studies on what are known as “possible mediating factors of adherence” indicate that without addressing psychosocial factors, PMTCT fails.
In the Serithi Project workshops for health care workers which I sat in all last week, the participants were asked to brainstorm barriers to delivery of and adherence to PMTCT and then to come up with possible solutions (This is called participatory action research and seeks to give the health care workers ownership over their intervention.) Over and over in these workshops, I heard these wonderfully committed and passionate staff speak with sadness in their voice about the impact of stigmatization and the need to encourage women to disclose their status. Each workshop group wished they had more time and personnel to provide women with more counseling and one-on-one support as well as create support groups to help women struggling with PMTCT.
However, traditional “onsite” support groups just are not feasible in resource-poor settings. As stated above by the workers themselves, there just is not enough time, space or staff to implement them. In regards to patients themselves, pregnant women and new mothers have issues with transport, scheduling conflicts, lack of child care, and discomfort in the third trimester and/or the birth of the child, often forcing her to leave the group. But most notably, onsite groups fail to reach the most socially isolated women. Women with undisclosed status or great fear of stigmatization are likely concerned about breeches of confidentiality by peers in the group and are the least ready to partake in discussion. Therefore, these women often decline participation in .the groups and we miss an opportunity to support a woman who needs it most.
Here is where I come in!
My research project aims to evaluate the feasibility and acceptability of a pilot intervention using text messaging (SMS) as a means for social networking among HIV positive pregnant women in South Africa. Basically, I am running a support group for which functions solely through SMS. The technical stuff is sort of involved, but here are the basics: I am using UK-based software (ZygoHUBS) that allows a group of individuals to be simultaneously connected through SMS. Each participant will be given a phone enabled to send unlimited SMSs to a single number. When an SMS is sent to this number it is directed it to the Zygos database (specific to that number) which will then turn it around and deliver it to all the members of the given preset group. Responses will likewise be sent by SMS to the entire group. Think of it like a walkie talkie radio system except with short written messages instead of spoken and the frequency is the phone number assigned to the group’s database. So in this way, the conversation will function much like one would during a traditional on-site support group.
The idea of the intervention, like other support groups, is to bring together peers with a particular shared experience to empower, educate and support each other through dialogue. Each group will be of 8 women newly diagnosed with HIV and undergoing PMTCT, one “experienced mentor”- a woman who already went through PMTCT, and a “clinician”-who will likely be a resident or a psychology grad student with backup from a medical practitioner. The group will ideally provide an outlet to discuss psychosocial issues such as fear and stigma, converse freely about health and pregnancy, ask questions and be reminded about various components of PMTCT, hear others’ stories and learn from their choices and experiences. A similar project, Project Zumbido in Mexico, is our model and was an amazing success.
The idea is that these SMS-based peer-support groups allow for constant social support and daily peer contact while avoiding issues of transportation, childcare, scheduling or lack of clinic space or staff. Most importantly, using the aforementioned software, all discussion will take place under “code names” (on phones registered to the project,) so women will remain anonymous to each other throughout the intervention. Therefore, it is less confrontational that a regular support group and participation is completely confidentiality.
Ultimately, the goal of my intervention is to improve adherence to PMTCT and therefore decrease the HIV transmission to infants. Right now, I am working solely to provide evidence that the intervention is feasible in Tshwane, South Africa and using qualitative methods to evaluate what effect it had on women's experience with HIV and PMTCT. Ideally I will provide early evidence of the potential efficacy of the intervention by comparing measurements of before and after psychosocial factors (the “possible mediating factors of adherence”) and using records to assess PMTCT adherence. Basically though, this part of the study is to get the intervention up and running so that I can go to put it in the face of foundations and phone companies face and ask for money and involvement! Fun!
The point of all this is to show you how your old mobile phone could save a baby. (At least that is how they would say it if this was an infomercial for adopting kids from Thailand or something.) But really, I need 20 mobile phones by November. Your single phone will be a HUGE help to the me and to the project. The phones do need to be GSM phones (they need to have a removeable SIM card,) so no Sprint or Verizon. (We'll be able to unlock it to use local SIM cards here.) Compatible chargers are also appreciated, but we can buy them if you don't have one. If you have a mobile phone to donate, please send it or give it to my mom (or if you are in Providence, give it to Jason) who will collect them. My preceptor will bring them to S. Africa when he comes in November.
Susan Lach
15834 50th Ave N
Plymouth, MN
55446
You can email me or comment here if you have any questions! I appreciate all your help!
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