Involving the Community and Civil Society in TB care

Involving the Community and Civil Society in TB care

Dr. Saw Saw M.B;B.S, PhD Deputy Director Department of Medical Research (Lower Myanmar) Dr. Saw Saw, DMR (LM)

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Outline • Role of Community and civil society in TB care and control • Evidence informing policy: Key Research Findings related to community-based TB care and control in Myanmar • Ongoing activities of community-based TB care and control in Myanmar – TB patient empowerment strategy – Community-based Activities of Local NGOs and International NGOs • Needs and Gaps • Conclusion • Call for Action Dr. Saw Saw, DMR (LM)

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WHO-recommended Stop TB Strategy

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Empower people with TB and Communities through partnership a. b. c.

Pursue ACSM Foster community participation in TB care, prevention and health promotion Promote use of the Patients’ Charter for TB care Dr. Saw Saw, DMR (LM)

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Role of Community and civil society in TB care and control People’s participation in and contribution to health systems has been recognized as central for primary health care and accepted as an essential element of many public health interventions

Community A community consists of people living together in some form of social organization and cohesion Community involvement “community involvement” is generally preferred to “participation” and points to the idea of partnership and shared responsibility with health services Dr. Saw Saw, DMR (LM)

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Civil society • Civil society is usually defined as the social environment that exists between the state or institutional level and the individual person or family.

Civil Society Organizations (CSOs) • Civil society organizations may originate from the community, neighborhood, working environment or any other social context beyond the immediate family, to collectively relate to the state, or lower institution • The role of civil society organizations is increasingly becoming more prominentDr. Saw Saw, DMR (LM) 5

Civil society organizations (CSOs) • Are not part of government or the private sector • aim to serve the interests of communities • are not run for profit NGO

Net work

CBO

FBO

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Community involvement in TB care • Community involvement in TB care and prevention also provides a chance to communities and CSOs, including patients’ and activists’ groups, to foster their empowerment in matters that strongly affect the common good of a society • Health services and local communities working together can bring practical solutions that respond to the needs of people where they live.

Community

Health services

resources

facilities

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High Political Commitment: Highlighting role of community and TB patients in Myanmar

The TB elimination tasks are‌..

To mobilize TB patients undergoing treatment and cured patients to participate in combating TB together with people.

Dr. Saw Saw, DMR (LM)

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Role of Research in TB control

Operational Research (OR) produces evidence that lays the groundwork for improving current strategies and introducing new tools and new partners the Stop TB Partnership has included a new section on OR in the Global Plan to Stop TB 2011–2015. Department of Medical Research (Lower Myanmar) is key department responsible for undertaking health research in Myanmar in collaboration with service managers and implementing partners Utilization of research findings and evidence based decision-making are crucial for all health interventions Research should be an integral component of funding support for NTP for monitoring and evaluation of interventions Dr. Saw Saw, DMR (LM)

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Evidence informing Policy • 4 research studies related to involving community and CSOs in TB care (2009-2013)

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Roles of TB patient Self Help Group in TB control activities in selected townships, Myanmar Saw Saw1, Tin Mi Mi Khaing2, Nay Htut Ko Ko3, Wai Wai Han1, Thandar Lwin2 & Naing3

1.DMR (LM), 2.NTP, 3.WVM

Objective: to describe the development of Self Help Groups (SHGs) and their roles in addressing TB Method: Intervention study conducted in two townships Baseline and Endline assessment s were carried out

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Role of TB SHGs cont.

Key Findings & Conclusion Activities of SHGs contributed to 23% of the total referral and 13% of the sputum positive TB cases of two townships Empowering TB patients as SHGs is an effective strategy It is context-specific & thus necessary to tailor to a given context Acknowledging SHG activities by community and public sector is the key for success Continuous monitoring of the process and technical guidance are also crucial Integration with livelihood sector enhanced the capacity, resources & sustainability of the SHGs Official registration from the government, unwavering support from key constituencies, improvement in management systems of SHGs would be required for sustainability of SHGs. Dr. Saw Saw, DMR (LM)

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Role of TB SHGs cont.

Recommendations To establish a network of TB SHGs to enhance leverage and to seek an official registration To expand TB SHGs to attract more TB patients and their family members and other interested community members To promote multi-sectoral collaboration with particular emphasis on integration with livelihood sector To strengthen institutional capacity of SHGs, particularly M&E system, financial management and resource mobilization and utilization

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Assessing involvement of community volunteers in TB control activities initiated by INGOs in selected townships, Myanmar Le Le Win1, Thandar Lwin2, Tin Mi Mi Khaing2, Saw Saw 1 &Yin Thet Nu Oo1 1.DMR (LM) and 2.NTP

Key Findings: • Volunteers from WVM & IOM involved in TB control activities actively.

• They are well recognized and accepted by community.

• Community including patients rely too much on volunteers and this could be due to getting benefits at no cost and easily accessible to volunteers.

• Most midwives also depend on the volunteers to some extent.

• The reasons for this situation were since mostly they could not spare time for going to city to accompany the patients, to send sputum and to get result of the patients because of engaging with their routine duties and unaffordable for the transportation expense.

• Collaboration at State level but a little weak in collaboration between midwives and volunteers

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Assessing involvement of community volunteers in TB control cont.

Recommendation: • To strengthen the collaboration between midwives and volunteers from both sides • to utilize the trained volunteers by NTP once the INGOs will pull out someday • To form village-based support groups like village member working group (VMWG), self-help group (SHG) and worked together with volunteers, BHS and NTP Dr. Saw Saw, DMR (LM)

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Community participation in TB control: willingness of TB patients in participating TB control in selected Townships, Upper Myanmar Thida, Hla Soe Tint , Saw Thein and Kyaw Zin Thant DMR (UM) and NTP • Almost all of the participants said they could help patients from the same community only • Reasons for not being able to help patients from other community were time constraint, transportation and financial limitation and being not familiar with the patients.

• Although 88% had positive attitude to be DOT provider, they perceived that family members were the most suitable person as it was a daily-job.

• Most of the patients had medium and good knowledge level on TB and its management and they could share their experiences to the symptomatic patients in their community but none of them know how to deliver key health messages properly.

Conclusion: TB patients from hard-to-reach area could be included in Dr. Saw Saw, DMR (LM) 17 case finding in their community if provided with proper training.

Development of a model of community DOTS in Pyinmana Township, Myanmar M Zaw,1 W Win Mar1 ,T Lwin1, H G H Nishiyama2 1.NTP, 2. JICA

Objective: to identify facilitating and hindering factors at the initial phase of development of Community-DOTS Methods: 29 Community Health Volunteers (CHWs) from rural and 19 from urban were trained by NTP for referral of TB suspects, health education and provision of DOT. Results: 21 TB suspects were referred within first 7 months.

(12, 57% were confirmed as TB) Activities of CHVs were limited due to transportation cost for sputum examination is needed Conclusion: Technical support from NTP facilitated CHVs activities and selection of CHVs is vital in successful Dr. Saw Saw, DMR (LM) 18 community-DOTS

Translation of Research into Policy and Practice • Evidences from research highlighted important role of community and CSOs in TB control • TB patient empowerment strategy initiated in Myanmar in 2011 • NTP Promoting community-based TB care and control in collaboration with implementing partners

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Ongoing activities of Community-based TB control activities in Myanmar • TB patient empowerment workshops initiated in 2011

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Community-based TB care International NGOs WVM IOM Union JICA Local NGOs MHAA MMCWA MWAF MRCS CAP TB (Community-based MDR TB management)-MMA Dr. Saw Saw, DMR (LM)

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Source: NTP annual report 2011

Involving community in TB care Individual level

• Old TB patients sharing their experiences and referring TB suspects Family level Family members providing DOT and moral support

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Community level: SHGs and CSOs Main activities: • Referring TB suspects • Providing DOT, social and other supports • Health education • Case Holding

Needs and Gaps • Funding to ensure their stability as organizations (core funding) while they implement their activities •Technical support, mentoring and resources that will assist them in delivering services, documenting activities, and engaging in advocacy •Training and capacity building for running their organization or group, and for implementing their TB activities, including mentorship and technical support •Linkages and partnerships to support their contributions to community health – including with other NGOs, national programmes such as the NTP, and providers of funding, training and mentoring and technical resources Dr. Saw Saw, DMR (LM)

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Conclusion Effective community contribution to TB care requires--• Strong referral, recording and reporting systems, easy access to laboratory services and a secure drug supply • Close collaboration between NTP and the community to provide technical and other support to the community initiatives and to ensure high-quality services. • Context specific motivation of community care providers and ensure ongoing motivation to sustain their activities

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Conclusion (cont.)

• Although community-based care is cheaper and more cost-effective than hospital-based care, new resources are often required for successful implementation • Some regular investment is required – to conduct initial training and refresher trainings for health staff and community volunteers – to strengthen health delivery systems such as laboratory and drug supply – to ensure proper and regular support and supervision of activities of both health staff and of community volunteers

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Future Research areas 1. Community-based activities of local NGOs for TB control 2. Community-based MDR TB management 3. Outcome of TB patient empowerment strategy 4. Reassessment of existing CSO, CBO and SHGs after 3-5 years

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Call for Action • Stewardship, acknowledgement & motivation of CSOs by public health sector • Capacity strengthening and Networking of CSOs • Utilize and maintain trained volunteers • Provide Financial and technical support • Establish linkage with livelihood sector for sustainability

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Key References

• Priorities in operational research to improve tuberculosis care and control, 2011. WHO • Community involvement in tuberculosis care and prevention : towards partnerships for health : guiding principles and recommendations based on a WHO review (WHO/HTM/TB/2008.397) • Assessing involvement of community volunteers in TB control activities initiated by INGOs in selected townships, Myanmar.(2012) Le Le Win, Thandar Lwin, Tin Mi Mi Khaing, Saw Saw &Yin Thet Nu Oo • Role of TB patient SHGs in TB control activities in selected townships, Myanmar.

2011, Saw Saw, Tin Mi Mi Khaing, Nay Htut Ko Ko, Wai Wai Han and Naing • Community participation in TB control: willingness of TB patients in participating TB control in selected Townships, Upper Myanmar, 2013. Thida, Hla Soe Tint , Saw Thein and Kyaw Zin Thant • Development of a model of community DOTS in Pyinmana Township, Myanmar Moe Zaw, Win Win Mar ,Thandar Lwin & H G H Nishiyama • National TB Programme, Myanmar. Annual Report 2011 • ENGAGE-TB: Integrating Community Based TB Activities into the work of NGOs and other CSOs – Operational Guidance. Geneva, WHO, 2012 (http://www.who.int/tb/people_and_communities/en, accessed 15 August29 Dr. Saw Saw, DMR (LM)

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