The Issue

Addressing social and emotional wellbeing is crucial to improve the lives of people living with chronic health conditions. Yet systems of care frequently focus only on the physical impacts of conditions.

Long-term health conditions are often highly stigmatised. This can mean that those living with them experience discrimination, hostility and shame in their communities and social lives, in addition to the condition itself. This has a major impact on a person’s quality of life.

This is not a side issue. Social isolation and stigma have severely detrimental impacts on health through:

• lower adherence to medication and treatment
• anxiety, depression and other mental health issues
• suicidal thoughts
• physical effects of loneliness, such as inflammation, muscle tension and digestive issues

Effective and sustainable sources of social support are needed to ensure that individuals are cared for as whole human beings, not just as patients.

The Approach

The Zumbido Health Model uses mobile phones to create social support groups for vulnerable, socially isolated groups. It is a time-bounded social support program wherein participants are placed in support groups of 10-15 peers who share similar experiences. These support groups are enabled by our digital platform, where participants discuss - peer to peer, at any time via text message - a range of issues pertinent to their condition or needs. The model has three crucial ingredients:

• Accessibility: a social support group is of no use to anybody if it can’t be accessed by its participants. Digital technology can be used to overcome barriers of time, stigma and geography.
  
• Intimacy: it’s easier to open up about personal experiences in a small circle of peers than in front of a big group. Our digital support groups are always small and closed, enabling a higher quality of interaction and a personal atmosphere.
  
• Anonymity: issues affecting people living with chronic conditions are often highly sensitive. Anonymity allows participants greater freedom to open up about their lives safely.

It is the combination of accessibility, intimacy and anonymity that makes the Zumbido Health Model uniquely effective in addressing social isolation and stigma in vulnerable groups.

Our methodology is founded on three key principles:

1. We put participant’s voices at the heart of the design and adaptation process.
   
   
2. We believe that digital technology enables the provision of social support, but it is not a solution in and of itself.
   
   
3. Our model is best facilitated by peers, people living with the same condition or in the same circumstances as the group’s participants.

We have worked with a range of populations in Guatemala, Mexico, Zambia, South Africa, Zimbabwe and the UK.

The Outcome

The Zumbido Health Model has proven impact in:

• Increasing self-reported medical adherence
• Increasing perceived levels of social support
• Decreasing internalized social stigma
• Increasing knowledge and access to services

Our participants have sent over 1 million text messages.

We are also developing a methodology for analysing our text message data called 160 Characters. This provides a unique perspective for understanding the mental health and wellbeing needs of vulnerable populations.

In implementing the Zumbido Health Model across contexts and populations, we have developed an expertise in participatory co-design for digital health interventions, particularly in the area of adolescent health.