Community Engagement for TB Care and Prevention

Workshop held at Foundation for Medical Research on 8th June 2018

A workshop to discuss the control approaches for TB through Community Engagement was held on 8th June 2018. The focus was on identifying which segment of the community can be harnessed for this work in Mumbai.

Some burning questions regarding the community engagement for TB care and prevention were discussed.This was followed by a brainstorming session on these points. The following key points emerged from the discussion/brainstorming:

1. Volunteers- It was proposed that when volunteers are invited for any work, they should be given suitable payment as a form of appreciation for sparing their time for a cause. Retention and regularity are of concern when volunteering is free. Payment is likely to ensure greater commitment. It was emphasized that the volunteers would have to have all the different skill sets for carrying out all the activities related to the intervention.
2. Patients and Families of Patients — It was noted that information in the form of simple IEC materials is beneficial. It is helpful to recruit family members of patients to discuss their thoughts on TB and how to deal with a family member who is suffering. Therefore, involving the families of patients who did not survive TB, or those who have completed DR-TB treatment, can be very powerful as they can talk about what worked and what went wrong.
3. Stigma and Co-morbidity- In order to reduce stigma it was suggested that efforts should be made to create awareness particularly at religious events or other mass gatherings and by involving religious priests. The problem of the high suicide rate must also be addressed and patient centric programs have to be developed. Confidentiality of past or current patients should also be assured. Another recommendation was to conduct ‘open house’ sessions with government offices, to make patients aware of public facilities available and increasing the confidence of the public in such facilities.
4. Local Philanthropy — Members from LSS outlined how they have achieved an 85% success rate in active case detection. The key elements of their strategy were to involve local practitioners, provide transportation of sputum samples, provide door to door service, create awareness and promote diagnosis through X-rays.They also focussed on nutrition of the patient and the family. This was achieved by local philanthropy, like the community grocers.
5. Strengthening of Public Sector — Dr. Osrin highlighted an important point of having system horizontality rather than verticality. He asked about the overall vision for this initiative and proposed strengthening the already existing public sector that should look after all the matters, instead of trying to mask their in-effectiveness by putting the responsibility on the NGO’s and the community.
6. Miscellaneous — There is a lack of technical knowledge within the NGO sector. If the programme helps in upgrading the knowledge and skills, it would be more beneficial. It can be seen as a continuous, interactive forum that does not have to be TB specific. Dr. Daruwalla discussed that SHG’s in urban areas did not work as well as those in the rural areas as there is a lack of cohesiveness.
7. Some of the key points that Dr.Mistry mentioned were:

• The term ‘community’ seemed to be loosely used, and should be clearly defined.
• There should be further discussions on how practical the approach is?
• There needs to be a high degree of motivation to be a volunteer, and this must be looked for and sustained among volunteers.
• Do we have the capacity to carry this out in all states?
• Is there any literature that talks about community engagement for TB?

The workshop was attended by:

1. Ms. Lorraine Rebello, Mr. Santosh Choure, and Mr. Siddhesh Gunandadekar of Medecins Sans Frontieres
2. Dr. David Osrin, and Dr.Nayreen Daruwalla of SNEHA
3. Ms. Ethel D’Souza and Mr. Swapnil Jadhav of LSS
4. Ms. Nisreen Ebrahim of Rangoonwala Foundation Trust
5. Dr.Nerges Mistry, Dr.Yatin Dholakia, Ms. Swaran Kamble and Ms. Shimoni Shah of FMR