Surviving the mental health impact of tuberculosis and HIV/AIDS

On Friday, October 7 – in recognition of World Mental Health Day – staff at Partners In Health’s sister project in Peru, Socios En Salud (SES), spent the day working at a community fair in northern Lima. Organized by the local health network Carabayllo Health Coordinators, the day’s events aimed to demystify mental health-related conditions – especially those affecting patients receiving care for tuberculosis (TB). 

SES staff and volunteers taught families about tuberculosis and mental health diseases.

Staff and volunteers played games and quizzed the 300-plus people who stopped by one of SES’s five booths. Community members learned about issues such as inclusion, care for the disabled, and skill development. SES also sold small wares – scarfs, hats, children’s toys – made by patients, a powerful example of what those living with mental health issues can do after receiving treatment and care. 

In an effort to reach as many people as possible, SES partnered with students at the local college, César Vallejo University, the police force and community health workers from across Carabayllo.

This outreach is just one of many ongoing mental health activities that SES has organized over the years. From fairs to long-term group therapy sessions, SES is committed to removing the stigma around mental health conditions and making services available to patients and family members who need them.

The hidden effects of a contagious disease

In the spring of 1999, SES began hosting its first group therapy session, filling a health need for men and women living with multidrug-resistant tuberculosis (MDR-TB).

“In my home they didn’t understand me – they didn’t know what it was to live with this disease,” remembers a group therapy patient. “Here in group therapy I feel like you all understand me. I can express my problems and sadness, and you support me. You help me so much.” 

The effects of MDR-TB – coughing, weight loss, debilitating fatigue, fever – extend beyond the physical body. Men and women are often isolated and shamed by stigma. Those infected often lose their jobs or drop out of school, leaving them as financially debilitated as they are physically.

Highly contagious in enclosed spaces, TB puts an infected person’s family and friends at risk. Many men and women find themselves forced to leave their homes. The psychological toll is difficult to imagine. Suicidal thoughts, psycho-emotional collapse and serious family or social problems are common consequences of infection.

Watch Jelen conquer MDR-TB and support her family by starting a small business.

Learning to cope with tuberculosis

SES organizes therapy sessions for patients affected by the stigma and discrimination surrounding TB, offering small groups of up to 20 people a chance to meet with each other in weekly meetings. Patients are empowered to express their emotions, verbalize problems and receive emotional support from others living through similar experiences. 

Patients move through powerful and relevant discussions, including:

• Thoughts about abandoning treatment
• Suicidal thoughts or intents
• Stigma and discrimination
• Adverse effects of anti-TB medications
• Problems in the home, with family
• Changes in sexuality and intimacy with partners
• Economic problems
• Fear of post-treatment relapse
• Fear of transmitting to family and friends
• Myths and misconceptions about the disease

The bi-monthly meetings are more than just a place to discuss fears and problems. The groups come to feel like extended families. Members celebrate birthdays and major holidays, take outings to the countryside, and attend workshops and educational sessions throughout the city. 

More than anything, group members function as a support system, helping each other complete treatment. 

Meet Carmen, a woman who thought she’d lost everything after contracting MDR-TB.

A SES patient discusses her problems at a group therapy session.

Taking stock of a program’s impact, sharing our results

With over a decade of results, SES’s group therapy program proves that at-risk patients have improved adherence rates after receiving mental health care. Not just that, staff have saved lives by intervening when patients were known to be contemplating suicide. 

After spending a number of months, or years, participating in the group programs, patients are better equipped to re-establish and improve social and family support networks – a crucial step towards returning to their lives. Participants also show a markedly improved capacity to face difficult situations after completing TB treatment. 

In 2011, SES wrote three technical regulation documents made available to public and private health personnel: Mental Health Care Model, Group Therapy Manual and The Guide to Caring for Psycho-Emotional and Adverse Psychiatric Events in People Affected by MDR-TB. 

Learn more about PIH’s work in Peru.