All Path-Breaking Initiatives
Locations: Tata Institute of Social Sciences, Mumbai
Sponsor: Global Fund for AIDS TB and Malaria
Saksham (which means “making capable”) is a project of the Tata Institute of Social Sciences funded by the Global Fund since 2008 to support the Ministry of Health and Family Welfare in its fight against HIV and TB. Saksham has shaped the Psychosocial support program for HIV and Tuberculosis (TB) in the country. Globally, Saksham is the only programme managed by a public national academic institution under the Global Fund.
Currently Saksham has three major grants in the area of HIV & TB counselling, capacity building and community engagement.
Using the learnings accrued from the engagement with the HIV/AIDS epidemic, in 2015 Saksham Pravaah introduced psycho-social counselling for TB in government’s TB control program in 4 states viz Maharashtra, including Mumbai, Gujarat, Karnataka, Rajasthan and has demonstrated the need for moving beyond the “bio-medical”, “disease control” approach and addressing social determinants of TB. 214 Saksham Pravaah Counsellors are integrated within the National TB Elimination Programme (NTEP) and are placed in each of the District TB Centres in the 4 implementation states. From Programme Initiation in October 2015 until March 2020, Saksham Pravaah has provided counselling and psycho –social support to 60,233 Drug Resistant (DR) TB patients and their caregivers. Saksham Pravaah counsellors provide home based counselling to support the DR TB patients in completing the treatment by addressing social determinants of TB and provide counselling on a range of issues including TB related Stigma and Discrimination, Gender based concerns and Mental Health.
During April 2019 to March 2020, Saksham Pravaah counsellors registered 19939 Drug Resistant TB patients. The counsellors are available as a support system to the patients from diagnosis of DR-TB until completion of treatment. Out of 19,939 patients registered for counselling, over 91% continue to remain treatment. Understanding the importance of involving caregivers as partners in treatment completion, Saksham counsellors also provide regular counselling to the family caregivers and have registered 18384 (92%) of the care givers of patients for counselling. In order to take measures to prevent TB and encourage early diagnosis and treatment initiation, 9769 household contacts of DR TB TB patients were counselled for TB testing of whom 89 were detected with MDR TB and 193 with DS TB.
One of the strategy of Saksham Pravaah to increase adherence to treatment is addressing Treatment Interruptions (more than 2 days of missed doses) at the earliest. Counsellors through their regular counselling follow up visits with the patients, discussions with family caregivers and NTEP treatment supporters are alert about any instances of treatment interruptions and on priority counsel the patients to become regular on treatment. Of the 8773 treatment interruption cases, 6804 (78%) patients were counselled and were retrieved on regular treatment. Adverse Drug Reactions are a challenge for treatment completion and out of 8137 patients reporting adverse drug reactions, 7481 (92%) were counselled for medical management and brought back on treatment.
TB is a disease of poverty and economic issues can hinder treatment adherence. In order to reduce the catastrophic burden of TB and increase treatment adherence, one of the major thrust of the Saksham Counsellors is linking patients to the available GoI social protection scheme and nutrition. There are many Social Protection Schemes made available by the Government of India in the area of health, maternal health, widow pension, job security etc. However, the information about these schemes is not accessible to the patients and the application process as well as the documentation required is tedious and cumbersome for a patient who is already grappling with DR-TB. The Saksham Counsellors link the patients who are at a risk of dropping out of the treatment due to economic issues and the available schemes. The counsellors undertake the process of identifying the most suitable schemes for the patients and the documents required based on a checklist developed by Saksham to guide this process. The counsellors also undertake the process of application for any documents that are missing. From counselling services initiation in September, 2016 to March 2020, Saksham counsellors have successfully linked 5893 TB patients and their family members to various State and Central Government Social Protection Schemes ranging from Old Age pension, Women and Child Welfare schemes, Schemes for the Differently abled, Health Aid schemes. The Saksham Counsellors have provided 5524 TB patients to Nutrition Support Services amounting to a total of Rs.1,08,42,514/-. The funding for nutrition support was raised through private donors and NGO’s by the Counsellors.
“Saksham” in the times of COVID-19 Pandemic
Saksham is committed to support the NTEP and hence the implementation is active with more rigour during the COVID -19 crisis. The Saksham Counsellors have tirelessly continued to support the DR-TB patients since the outbreak. Most of the counsellors have been given special identity cards by the NTEP and they are providing enhanced counselling to the DR TB patients to deal with their fears and anxiety about COVID-19, take necessary precautions against the virus and supporting the patients in treatment adherence.
During the COVID-19 lockdown period, between 16 March-30 June 2020, 67471 follow up counselling sessions were provided by the counsellors of which, 7230 were home based, 7309 were in the health centre, 234 were in the work place and 52698 were telephonic counselling sessions.
Between 16 March-30 June 2020, many patients had migrated to their howmtowns without taking adequate medicines, Saksham counsellors had received information about 878 DR TB patients who had migrated. 672 patients had migrated within the 4 Saksham implementation states and 206 went outside of Saksham states. 844 (96%) of the migrated patients were traced by the Saksham counsellor and each patient was guided and assisted for successful treatment initiation at patients nearest health centre in the respective destination. 4% of the patients who could not be traced were those with whom any subsequent contact could not be established.
Linking patients to Nutrition and Social Protection Services during the COVID 19 Pandemic
TB is a disease of poverty and economic issues can hinder treatment adherence. In order to reduce the catastrophic burden of TB and increase treatment adherence, one of the major thrust of the Saksham Counsellors is linking patients to the Nutrition services and available GoI Social Protection Scheme.
The Saksham Counsellors have been extra vigilant during the COVID 19 crisis and ensured that nutrition kits (monthly staples) are provided to the most vulnerable and in need patient households. The counsellors not only procured but also packed and delivered the nutrition to the households on their own.
Between March 16 - June 30, 2020, Saksham Counsellors provided nutrition kits to 2132 TB patients and their families amounting to Rs. 20,48,127.00/- The funding for nutrition support was raised through private donors and NGO’s by the Counsellors.
Saksham Counsellors also linked 522 DR TB patients to Social Protection Schemes ranging from Old Age pension, Women and Child Welfare schemes, Schemes for the Differently abled, Health Aid schemes and COVID-19 relief funds.
From 2018 Saksham Prerak, as Sub Recipient to Plan India and in partnership with the National AIDS Control Organization (NACO), is supporting India’s commitment in achieving UNAIDS 90-90-90 targets to end the AIDS epidemic by 2020. The Project is focused on strengthening human resources for health under NACP as well as its integration into NHM through HR- task sharing/task shifting and is supported by the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM). The Project that was initiated in January 2018 has received an extension of nine months until December 2020.
The two objectives of Saksham Prerak have achieved the following outcomes till March 2020:
1. Over 11000 nurses have been trained in community based screening for HIV & syphilis thereby establishing over 6500 facility integrated counselling & testing centres (FICTC) serving under NACO and NHM of Ministry of Health and Family Welfare to eliminate mother to child transmission of HIV/AIDS (EMTCT) by 2020. Over and above the use of the testing kit a large part of the nine hours training included soft skills of communication and how to address barriers of stigma and discrimination to ensure every pregnant woman in India can access services.
2. The counsellor’s capacity building exercises were adapted from the earlier, 2014 efforts of Saksham and updated to form two parts, a contact (classroom) and another online. The Training of Trainers (ToT) for the contact version was conducted in August 2019 with the first batch of counsellors taking part in September 2019. Till March 2020, over 2800 HIV counsellors under NACO have been provided with approximately 28 hours of hands – on training on essential skills and attitudes required to help clients accessing services at ICTC, STI and ART centres across the country. The complementary part of approximate 30 hours of theory and knowledge in counselling will be launched through an online module in the latter half of 2020.
The curriculum for all trainings are guided by a national Training Sub-committee at NACO comprising of technical experts from NACO, NHM, UNAIDS, NGOs, Positive network representatives and representatives of ACS of states/UT. Project trainers are based in ten Regional Training Units spread across the country comprising of about 10 Programme Coordinators and 30 Capacity Building Specialists. The trainings for the nurses are conducted at the district and taluk levels while the counsellor’s trainings are conducted at state capitals, both with the support of central and state government offices of AIDS Control Societies and NHM. A central team manages the technical and operational aspects of this national project from the campus in Mumbai. In the middle of March 2020 all the trainings were suspended indefinitely due to the novel corona virus pandemic affecting India.
Saksham Jan Urja
In Collaboration with Tata Power Community Development Trust, Saksham initiated a community engagement project called Saksham Jan Urja. In its second phase of intervention, from January 2020, Saksham Jan Urja has initiated a “Peer Counselling Model” within the Mumbai District TB Control Society, Municipal Corporation of Greater Mumbai. TB patients who have successfully completed their treatment are involved as s “Peer Counsellors” and a role model for treatment adherence and supporting the TB patients in treatment adherence, given their own journey of becoming TB free. The Peer Counsellors are termed as “Saksham Saathi”. The Saksham Saathis are trained by Saksham Jan Urja and are provided a modest honorarium. They are placed in 9 District TB Centres of Mumbai and are involved in counselling.
From February 2020 until March 2020, the Saksham Saathis have undertaken telephone counselling with 138 DR TB and 99 DS TB patients. Furthermore, the Saathis provide counselling to patients who had interrupted their treatment and have successfully retrieved 16 patients back on regular treatment. The Saksham Saathis are continuing to provide telephone counselling to DR TB patients during the COVID-19 outbreak.
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