When people think about online communication and the opportunities for connection it provides, they quite often don’t realize the importance of virtual spaces for people with chronic health conditions, like HIV-positive African adults and adolescents living with HIV. Quite frequently, these people face social isolation, loneliness, stigma and depression. Even worse, for adolescents, aged 10 to 19 years old, HIV is the leading cause of death in Africa.

On top of that, the social distancing imposed due to COVID-19 made the situation worse. Being overly isolated poses a risk to their mental health since people living with chronic health conditions don't have access to their usual face-to-face sources of support, such as. visiting clinics, attending appointments with their doctors, etc.

Privacy at home is a major cause of concern for these individuals. They don’t want to be stigmatized. Besides, their living conditions might be crowded, and they may not have disclosed their status to their family members. Therefore it’s difficult to open up about their problems to those they live with or to access social support over the phone when someone might overhear, as these individuals don’t want to be stigmatized.

The dilemma then was: How to provide mental health support for such isolated people while keeping their privacy intact?

That's where social support groups through text-based platforms come in.

Support groups empower people by providing them with information about their health condition and a space to discuss the challenges they face.

When you're part of a support group, you're more likely to take your medication and support others. These groups play a critical role in improving people's mental health. Traditionally, support groups have been run face-to-face, but digital technologies have opened up new ways to conduct them.

For the past 10 years, the SHM Foundation, a London-based NGO, has successfully developed different types of support models for people affected by stigma and social isolation using mobile phones.

They work globally to bring about positive social change through projects in learning, citizenship, health, and the arts. The SHM Foundation’s support groups model had proved effective in lots of settings, but finding the right technology had always been the main struggle.

When technology spaces meet high-privacy requirements

When organizations turn to technology to create digital spaces, they must reflect on the particular profile and needs of people with whom they are going to interact in that space. Questions such as “Who is the main audience that will communicate through that space?” or “What are their main needs?” must be addressed.

For instance, with young vulnerable people who are discussing sensitive topics such as their physical and mental health, ensuring the privacy and confidentiality of those conversations is paramount. That’s why due to its privacy needs, during its first years, SHM Foundation relied on text messaging to run their digital interventions, but the volume of messages turned it into a very expensive tool.

Thereafter, social apps like Whatsapp were tested, but they didn’t have the confidentiality aspect needed. In 2017, SHM Foundation was looking for a virtual platform to monitor and facilitate the group dynamics of Zumbido Health, a project created to support HIV-positive African adults. They heard about Rocket.Chat and decided to give it a try.

I sent an email to Gabriel (Rocket.Chat’s founder) and he replied immediately. We were so happy because we knew Rocket.Chat would allow us to run these groups safely and securely.

Anna KyddSHM Foundation's Director

They even created their own guide with tips and suggestions on how to run virtual support groups - download it here.

A Secure Messaging App For Mental Health Support

Choosing Rocket.Chat was a no-brainer for SHM Foundation because of its security aspects: end-to-end encryption, global privacy compliance, data ownership, and auditing tools were a few among many features needed for highly-private support groups.

Currently, the platform supports around 150 adults and adolescents living with HIV from Zambia, South Africa, and Zimbabwe. As the pandemic unfolded, the platform usage has increased as many participants weren’t able to attend school, or go to see their doctors.

Using Rocket.Chat has been an amazing support for them. They're sending so many messages there, exchanging ideas about all sorts of concerns and worries that they might have to support each other. It's really lovely to see.

Anna KyddSHM Foundation's Director

Besides thousands of messages exchanged on a daily basis, the group also leverages Rocket.Chat for:

Career and life mentoring
Online Events with Guest speakers (E.g. Nutritionists, Doctors)
Content and trend topics

Leveraging Communication To Protects Lives

By using Rocket.Chat’s administrator dashboard, SHM Foundation’s mentors are able to easily monitor the group’s mental health stats easily. They do that through flagging words that represent risks to the individuals (e.g. suicide). Being notified about these risky terms allows support mentors to act, using a proper protocol for either referring people to certain services and talking to them individually needed.

Customizing The Platform With Purposeful Channels

Thanks to the customization possibilities offered by Rocket.Chat’s channels, loneliness seems to be replaced by mutual support in the Zumbido Health Project:

As for adolescents living with HIV, there's often this feeling that you don't have a future, because you may die of the condition. However, with the support groups, we hear amazing stories of them suddenly feeling that they have a future, and they can think about their careers.

Anna KyddSHM Foundation's Director

More often than not, people will just connect to their Rocket.Chat, talk about their day and relax. For the support groups in Zimbabwe, “the young people wanted the space to be a relaxation space”. “So we called it a ‘lounge’”, said Anna.

In Zambia, the platform is even part of a large scale medical trial. Participants have their blood taken at the beginning and at the end of the treatment, so the study team will be able to know if being part of the group has helped them to take their medication more regularly.

Next Steps

Ultimately, the support group’s power comes from sharing knowledge and creating a space for connection. Participants become informed about their condition and are able to discuss issues that they are facing, which improves their confidence in taking care of their health, going to see a doctor, taking medications, etc. Even more fundamentally, they are able to connect with others who have shared experiences with them and realise that they are not alone.

With around 30 young people living with HIV in South Africa being trained up to manage their support groups, SHM Foundation plans for the next steps “definitely to expand their projects”, said Anna. “We would love to prove that support models play a really important role in helping people with different chronic health conditions”.