SHAINI SAKSENA tells you how patient support groups have helped people suffering from TB by increasing help-seeking behavior

Participation of individuals affected by any disease forms the center of any public healthcare response. While interventions by the government, civil society organisations, donors and others are vital, success largely depends on the individuals. Tuberculosis is a curable disease and a successful treatment is possible when there is a person-centered care approach used.

The treatment process is long-drawn, expensive, and can cause severe stress. Many also report severe treatment side-effects like loss of appetite, nausea and temporary blurring of vision. These can lead to patients stopping the treatment process. Hence, it becomes crucial to offer an empowering experience which motivates them to seek help and continue their treatment. 

Even though there are plenty of free TB care services available, the cost incurred in transportation, medicines and taking a nutritious diet can cause additional problems for people. Many times, people undergoing TB treatment may not know someone who also suffers from TB and needs additional support and understands what they are going through. This is where Patient Support Groups play an important role. 

A patient support group is a non-judgmental, inclusive gathering of patients and caregivers which are held for the patient and enables mutual support through experience-sharing and discussing concerns about treatment protocols with other patients. Not only can these groups help in providing support, but they can also help in making the person understand the importance of treatment adherence. These meetings allow sharing of experiences which offer hope and help one realize that “they are not alone”.

Patient support groups also make people understand the importance of counselling and how important it is for a holistic treatment of TB, which accounts for physical and mental health. Therapy is an integral part of the treatment as it provides necessary support and positive coping strategies to deal with the situation by interacting with others going through the same challenges. 

The National Strategic Plan (NSP) for TB in India has included patient support in its guidelines. The guidelines specify that every patient who is on TB treatment must be given nutritional support, treatment literacy and counselling. Karnataka Health Promotion Trust (KHPT) has set out to work towards filling this gap by providing a space for the patient where they can share their experiences and reassure them that they are not alone. As the meetings were held within healthcare settings, they could interact with medical experts and access correct information as well which was also a motivation for them to attend these meetings.

Patient support groups have helped numerous people suffering from TB by increasing help-seeking behaviour. These groups are an important part of TB treatment that help patients overcome unpleasant treatment experiences and stigma during the treatment period using a peer support approach. They also make sure that the treatment process is more inclusive and interactive and hence must become a beacon of hope for so many of us suffering from TB.