SMS Support Network: Connecting People with HIV/AIDS in Mexico

Mobile phones are creating connections between people living with HIV/AIDS in Mexico. A recently completed pilot project called Zumbido allowed its 40 test users of diverse backgrounds to communicate about the daily challenges they face in a meaningful and lasting support network. Unlike other hotline or support mobile phone services, where a user calls one person for help, Zumbido functioned as a network, with each text message sent to every member of the support group.

Mobileactive had a conversation with Anna Kydd, one of the project coordinators of Zumbido. Zumbido -- "buzz" in Spanish -- provided its 40 participants with mobile phones and unlimited text messages. The large group was broken up into four smaller groups of 10. Each group had a mix of different types of people from urban and rural locations, all from the Mexican state of Jalisco. Each group also included a professional doctor or psychologist. "The role of the professional was not to be a sort of leader in the group, however," said Anna. "Everyone in the group was an expert in their own experiences, and they all had something to give that group."

Anna said that the project started when she and her colleagues saw the need for some kind of support network for AIDS patients in Mexico. "Although medical treatment is free in Mexico, a lot of people still face lots of day to day challenges," she said. HIV/AIDS patients face isolation, stigma, discrimination, or have to deal with emotional issues like telling their families that they have HIV. Others face discrimination at work, and will stop taking their medicine because they don't want to be seen with the pills in their workplace. Anna said that mobile phones seemed the perfect tool to connect these people. Only about half of the participants had received any type of counseling after being diagnosed, and many said they lacked information or support to deal with the disease. "It became obvious that the mobile phone had huge potential and value to create these networks," said Anna.

From the first day of the pilot study, text messages flew within the four support networks. "The usage was staggering," said Anna. By the end of the three months, 25,000 text messages had been sent between the 40 people participating in the project. Anna said that the phone company was amazed. "We were the largest client that they had for text messages," she said. The groups could also leave each other voice messages or participate in conference calls.

The initial concerns of the project organizers -- that people would send jokes, or it would turn into a sort of "chat room" -- proved unfounded. Instead, the participants began to develop meaningful relationships with each other, reaching out from behind the barriers that separate people living with HIV/AIDS from the rest of society. In one group, a woman stopped taking her medication, telling the group that she wasn't taking it because of what she thought was a side effect of painful headaches. She didn't want to go to a doctor because she didn't want to admit not taking the drugs. But with the encouragement and advice of her group through SMS, she finally went back to the doctor. "She got to the clinic and she texted all of her co-members, who wished her good luck and told her she'd be ok," said Anna.

The groups not only exchanged messages of support, but provided each other with information. In another group, somebody who lived in an urban area texted the group about Nelfinavir, a drug that had been taken off the market because of high cancer risks. A man in a rural area, who was taking the drug but didn't know about the cancer risk, stopped taking it and changed his medication.

Yet another group, calling themselves the "Zumbido family," communicated constantly. They'd wish each other good morning and good night, and worry if they didn't receive an SMS from one of the members within a day. Some sent medication reminders, encouraging other group members to take their medicine on time.

The project, which was run by a UK-based consultancy company called SHM, was complicated technically, said Anna. "We thought it would be quite easy to set up, but it became very very complicated," she said. "It's a miracle that it worked, to be honest." Zumbido used a UK-based group messaging software called ZygoHUBS. When a user sends an SMS to a pre-arranged Zygo number the message is then received by each member of the pre-established group.

Anna said the biggest problems they faced were technical ones due to network problems with the telecommunications company. People felt the need to know about technical problems, she said, so that they knew that problems weren't caused by their individual phones. Costs were also an issue. "The issue in Mexico is high telecommunciations costs. It's very very expensive," she said.

Although SHM is currently looking for funders, the project is unable to continue because of costs. However, the Zumbido project has certainly touched and made a tangible difference in the lives of its 40 participants. In a follow-up survey by Zumbido, participants reported feeling less isolated, having better support networks, and having improved relationships with their families. Anna said that many of the participants, especially women, feel empowered after learning how to use the technology. "Over half had never used a mobile phone before," said Anna. "Now they have that skill." Literacy improved for some of the participants, as they felt a need to be able to communicate through writing. Some of the participants are now meeting in person, still looking for support in the absence of their SMS network.

For more information on the project, contact Anna Kydd, anna [at] shm-ltd.co.uk or Monica Rodriguez at monica [at] shm-ltd.co.uk.

Photo credit to Anna Kydd. The photo is from a workshop with the Zumbido participants.