Assessment of Community-based MDR TB care in Yangon …...Multi-Donor Trust Fund (3MDG Fund) coordinating and collaboration with National TB Program.In 2015, MMA has continued implementing

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Assessment of Community-based MDR TB care in Yangon Region: An Operational Research

Saw Saw1, KhinSwe Win2, Si Thu Aung3, AungPyae Phyo1, Kyaw Thu Soe1, Zaw Lin Tun2 and MyatKyaw Thu3

Department of Medical Research Myanmar Medical Association

National Tuberculosis Programme, Department of Public Health

February 2018

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List of investigators Principal investigators

1. Dr. Saw Saw

Director (Socio-Medical Research)

Department of Medical Research

2. Dr. Khin Swe Win

Programme Coordinator

MMA MDR-TB Project

Co investigators

1. Dr. Si Thu Aung

Programme Manager

National TB Programme

2. Dr. Aung Pyae Phyo

Research Officer

Health Systems Research Division


3. Dr. Kyaw Thu Soe

Research Officer


Department of Medical Research (PyinOoLwin Branch)

4. Dr. Zaw Lin Tun

Senior Project Officer

MMA MDR-TB Project

5. Dr. MyatKyaw Thu

Assistant Director/Focal person for MDR- TB

National TB Programme

Collaborators

1. Dr. Myo Myat Aung

Project Officer, MMA MDR-TB Project

2. Dr. Thurain

AEI Officer

MMA MDR-TB Project

3. Dr.Khine Sabai Min

M&E Officer

MMA MDR-TB Project

4. Daw Thandar Min

Research Assistant



5. Daw Hla Thida Tun

Research Assistant



6. Dr. Zayar Moe

Project Assistant, MMA MDR TB Project

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Acknowledgement Our sincere gratitude goes to Director Generals from Department of Medical Research and

Department of Public Health, Deputy Director General (Disease Control) and the President from

MMA for their kind approvals to conduct this study. Special thanks go to Regional Health

Director and Regional TB Officer from Yangon Region, NTP staff, TMOs, TB coordinators and

BHS from study townships (Thingankyun, HlaingTharYar, ShwePyiThar). Our heartfelt thanks

are given to volunteers, staff from MMA, MHAA, PyiGyiKhin and research assistants who

involved in data collection. We are grateful to all MDR TB patients and all participants for

sharing their views and experiences with great enthusiasm. Without them, this research would

not have been possible. The study was funded by the 3MDG.

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Table of content

List of abbreviations

Executive summary ……………………………………………………………………………………………………………… 9

Introduction ………………………………………………………………………………………………………………………… 11

Objectives …………………………………………………………………………………………………………………………… 13

Methodology ………………………………………………………………………………………………………………………. 15

Findings ………………………………………………………………………………………………………………………………. 21

1. Background characteristics of MDR TB patients ………………………………………………………. 23

2. Treatment seeking pattern of MDR TB patients ………………………………………………………. 23

3. Treatment outcomes of MDR TB patients …………………………………………………………….... 26

4. Recruitment process of community volunteers and volunteers supervisors …………… 27

5. Attrition among recruited community volunteers …………………………………………………… 29

6. Performance of community volunteers …………………………………………………………………… 30

1.1 Providing Evening DOTS to MDR-TB patients ……………………………………………………….. 30

1.2 Health Education and adherence counseling to MDR-TB patients and close contacts.31

1.3 Side effect monitoring of MDR-TB drugs ………………………………………………………………. 34

1.4 Home-based infection control ………………………………………………………………………………. 36

1.5 Household Contact tracing and referral ………………………………………………………………… 37

1.6 Assisting in monetary and nutritional support ………………………………………………………. 37

1.7 Assisting in follow up visits ……………………………………………………………………………………. 37

1.8 Recording and Reporting ………………………………………………………………………………………. 37

2. Role of volunteers in community based MDR TB care ……………………………………………… 38

3. Success of CB MDRTBC ……………………………………………………………………………………………. 40

4. Challenges of CB MDRTBC ………………………………………………………………………………………. 43

5. Patients’ preference on existing support package ………………………………………………….. 48

6. Opinions and Suggestions ………………………………………………………………………………………. 52

Discussion and conclusion ………………………………………………………………………………………………….. 57

Recommendation ………………………………………………………………………………………………………………. 61

References …………………………………………………………………………………………………………………………. 62

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Abbreviations TB = Tuberculosis

MDR-TB = Multidrug resistant tuberculosis

CB MDRTBC = Community based MDR-TB care

NTP = National Tuberculosis Programme

NGO = Non Governmental Organization

MMA = Myanmar Medical Association

PGK = PyiGyiKhin

MHAA = Myanmar Health Assistant Association

DOT = Direct Observed Treatment Short Course

BHS = Basic Health Staffs

ANC = Ante Natal Care

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Executive summary This is a collaborative operational research among DMR, National TB Programme (NTP) and

Myanmar Medical Association (MMA). It aimed to assess the patient-centered community based

MDR-TB care (CB MDR TBC) and treatment support model implemented by local Non-

Governmental Organizations (NGOs) in Yangon (2015-2016). The study was conducted in three

townships in Yangon where three local NGOs (MMA, PyiGyiKhin and Myanmar Health

Assistant Association) implement CB MDR TBC. Record review of MDR TB patients’ registers

from 37 townships and volunteer reports from 3 study townships; 16 key informant interviews

with Basic Health Staff (BHS) and local NGO staff; six Focus group Discussions (FGDs) with

MDR TB patients; and three FGDs with community volunteers were conducted. Ranking were

conducted during FGD with MDR TB patients to prioritize their needs on care and supports.

Observation of quarterly meetings of local NGOs, volunteers and BHS at township was also

carried out. Qualitative data were analysed with the assistance of Atlas ti version 6.1 software.

Community volunteers provided evening Directly Observed Treatment (DOT) to (1654/2053,

81%) MDR TB patients in 2015-2016 in 37 townships in Yangon where 3 local NGOs

implemented comprehensive community based MDR TB (CB MDR TB) care. They provided

health education and adherence counseling to MDR TB patients and referred 578 contacts of

MDR TB patients. Among referral, 48 (8%) were diagnosed as TB and 14 (2%) were diagnosed

as Drug Resistant TB. Majority of participants accepted role of volunteers for CB MDR TB care

as they assist and reduce workload of BHS. Adherence counseling and evening DOT by

volunteers were appreciated both by patients and BHS. Attrition of volunteers was low (8%).

Main reasons for sustainability of volunteers were proper selection of them in collaboration with

BHS and supervision and monitoring. MDR TB patients preferred monetary support, evening

DOT and adherence counseling in order of ranking. The challenges identified as weak

coordination between LNGO and BHS for supervision of volunteers; refusal of patients to take

treatment, some BHS pointed out patients did not appreciate their care and more rely on LNGOs

or volunteers who provided them monetary supports. Some BHS stated that they gave priority

for selection of volunteers would usually assist them. However, few key informants concerned

volunteers would not assist them for other health activities which did not pay any incentives (eg.

Immunization, AN care). Few BHS could not provide injection at MDR TB patient’s home and

very few community volunteers were absent to provide evening DOT. The study recommended

strengthening coordination among local NGOs, volunteers and BHS; enhancing supervision and

monitoring my Township Health Department to ensure DOT; continuing monetary support for

MDR TB patients, clarifying roles and responsibilities of BHS, volunteers and volunteers’

supervisors; and expending CB MDR TBC while human resources at public health sector is

limited. Dissemination meeting to share research findings was conducted on 26th

December 2017

and recommendations were taken up by the NTP and implementing partners.

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Introduction

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Introduction

Tuberculosis, one of the diseases of national concern, is still a major public health problem in

Myanmar. Not surprisingly, the burden due to MDR-TB is also immense in Myanmar. The

country is listed as one of the 30 high TB, MDRTB and TB-HIV burden countries in the world

(1).

The management of MDR-TB patients is rather complicated, resource intensive and costly to

both patients and countries’ health systems. Current recommended MDR-TB treatment includes

highly toxic drugs with long treatment duration, which lead the patients facing many social and

psychological problems along with their disabilities due to the drugs’ side effects (4). The

treatment success rate among MDR-TB patients is significantly poor at ~50% because of high

rates of mortality and loss to follow-up among them (1).

Multi-drug resistant tuberculosis (MDR –TB) is one of the major challenges facing global TB

control today. It was estimated that there were 480,000 new MDR-TB cases worldwide, 125,000

patients enrolled for MDR-TB treatment, and 250,000 deaths due to MDR-TB in 2015.

Compared to 2014, the number of treated cases increased, but the incidence of MDR-TB and

number of deaths due to MDR-TB was higher than that of estimated 190,000 deaths in 2014 (1-

3).

The third nationwide drug resistance survey (2012-2013) in Myanmar showed that the

prevalence of MDR-TB was 5% among new TB cases and 27.1% among retreatment cases.

Compared to previous drug resistance surveys, it was significantly higher (4% in 2003, 4.2% in

2008, 5% in 2013 among new cases, 15.5% in 2003, 10.2% in 2008, 27.1% in 2013 among

retreatment cases) (5-7).

Myanmar has the treatment success rates among registered MDR-TB patients as 79% versus

50% for 2012 cohort. This is possibly due to several patient support measures implemented by

the National TB Programme (NTP) (1).

However, the big gap still exists between estimated incidence of MDR-TB, number of patients

diagnosed and numbers treated in Myanmar. World Health Organization (WHO) estimated in

2015 that 9,000 MDR-TB cases develop each year, less than half of them are diagnosed and not

all of the diagnosed patients are enrolled for treatment (1).

To fight against MDR/DR-TB, the National Tuberculosis Programme (NTP) in Myanmar, in

close collaboration with partners and generous support of the donors has been implementing the

programmatic management of drug resistant TB (PMDT) guidelines since 2009. The pilot

project in 2009 initiated in ten townships of Yangon and Mandalay Regions has now been scaled

up country-wide with decentralized availability of treatment services at every township. The

PMDT includes initial hospitalization, only for sick patients, for baseline investigations and

treatment initiation, follow by ambulatory care in the community. During the ambulatory care,

patients receive DOT by a nurse, Basic Health Staff (BHS), Non-Governmental Organization

(NGO) staff or volunteer trained in DOT and MDR-TB care (8).

Both the STOP TB strategy and The END TB strategy of WHO recommended the involvement

of community in delivering TB care (9-10). The community-based tuberculosis care has been

proved as an effective model in early TB case findings, providing DOTS for TB patients by

previous studies in Myanmar (11-13).

To reduce the morbidity and mortality of MDR-TB in Myanmar, early and increased MDR-TB

case detection, improving linkage to appropriate treatment initiation once diagnosed and

successful treatment with short, efficient and tolerable therapy are crucial. More importantly, a

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public health effort to prevent further transmission of and progression to MDR-TB needs high

attention. By 2020, Myanmar targets to enroll all MDR-TB patients on treatment within 2 weeks

of their diagnosis and standardized patient support package to enable treatment success rates of

more than 80% (14).

Four local NGOs namely MMA MDR TB project, Myanmar Health Assistant Association

(MHAA), PyiGyiKhin and Maternal and Child Welfare Association (MCWA) implement

community based MDR TB projects since 2013 in Yangon Region (14).

This community based DOT model is scaled up by The Three Millennium Development Goals

Multi-Donor Trust Fund (3MDG Fund) coordinating and collaboration with National TB

Program.In 2015, MMA has continued implementing this model, as MMA MDR-TB Project, in

8 townships of Yangon Region.Community volunteers were recruited from the existing

community networks in the 13 focus townships. They worked alongside basic health staff to

conduct daily home visits to MDR-TB patients for evening DOT,providing psychosocial support,

conducting contact tracing, infection control and providing health education to patients and

family members. Other supports include nutritional support and financial support (30000

kyats/month).

These were the country’s first community volunteers to provide DOT for MDR-TB patients, and

the community-driven DOT model was recognized by the international sector for its potential for

scale-up.The NTP has also valued the potential of this community-based MDR TB model to

support rapid scale-up of PMDT through expansion to other project townships. With support

from the 3MDG Fund, this model has now been scaled up to 43 townships in Yangon through 3

partners MMA, MHAA, and PGK. MCWA got funding from Burnet Institute to implement CB

MDR-TB in one township in Yangon.

The net impact of these measures on treatment outcomes among MDR-TB patients have not been

systematically assessed yet. Furthermore, studies are limited to evaluate how much success has

been made so far about this patient-centered community-based MDR-TB care model, and to

address the operational challenges.

Expected benefits:-

The findings from this operational research will highlight the current situationof patient-centred

community-based MDR-TB care and treatment support model in Yangon Region. It would be

useful in scaling up of this model to other regions in Myanmar and to strengthen and sustain

partnership approach.

Objectives

General objective

To assess the patient –centered community-based MDR-TB care and treatment support model

implemented by local NGOs in Yangon (2015-2016)

Specific Objectives:-

1. To assess treatment outcomes (the cure rate, treatment success rate and mortality) of

MDR-TB patients enrolled by NTP in 2015 and supported with standardize package of

support by trained community volunteers of local NGOs

2. To determine the performance of community volunteers on MDR TB care and support

3. To explorethe success and challenges ofcommunity-based MDR TB care and treatment

support model

4. To elicit the suggestions and opinion of community volunteers, Basic Health Staff and

MDR TB patients on community-based MDR-TB careand treatment support model

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Methodology

PHOTOS

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Methodology:

Study design: An operational research using mixed methods design

Study Areas: Yangon, the city with the highest population density and large existing of mobile

and migrant population, enrolled the highest number MDR-TB cases (1272 out of 2793 MDR-

TB cases). Three townships (one township from each local NGO) were selected for qualitative

assessment in Yangon based on criteria of largest enrollment number of MDR-TB patients in

2015-2016.

1)ThinganKyun (MMA township)

2)HlaingTharYar (MHAA township)

3)ShwePyiThar (PyiGyiKhin township)

Study Population:

NTP enrolled MDR-TB patients from January 2015to September 2016 from study

townships

Trained Community volunteerswho were providing MDR-TB treatmentfrom study

townships

Community supervisors from study townships

Township Medical Officers (TMOs), TB coordinators, and midwives from study

townships.

Data collection methods and sample size

Objectives Data collection methods Study population and Sample

size

1. To assess treatment

outcomes (the cure rate

and treatment success

rate and mortality) of

MDR-TB patients who

are enrolled by NTP in

2015 and supported with

standardize package of

support by community

volunteers

Record review of MDR TB

treatment registers from 37

townships and records of

community volunteers from 3

study townships

NTP enrolled MDR-TB patients

from January 2015 to September

2016 in Yangon Region

2. To determine the

performance of

community volunteers on

MDR TB care and

support

Record review of community

volunteers’ reports from study

townships

Supervision reports of

community supervisors

3. To explorethe success

and challenges of

community-based MDR

TB care and treatment

support model

Key informant interviews (KIIs)

by using pre-tested Guide

(Annex 1)

Focus Group Discussion (FGDs)


(Annex 2)

From each township:

One TMO, one TB coordinator

and one community supervisors

One FGD with Community

volunteers

One FGD with MDR TB patients

who completed initial treatment

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4. To elicit suggestions and

opinion of community

volunteers, Basic Health

Staff and MDR TB

patients on community-

based MDR TB care and

treatment support model

Key informant interviews (KIIs)


(Annex 1)

Focus Group Discussion (FGDs)


(Annex 3)

From each township:

One TMO, one TB coordinator

and one community supervisors

One FGD with Community

volunteers

One FGD with MDR TB patients

who completed initial treatment

Data Management:-

Quantitative data were obtained from the existing records ofMDR-TB projects and MDR-TB

treatment registers of NTP and descriptive analysis were done.

Qualitative data from KIIs and FGDs were transcribed and analysed according to main themes

and sub-themes with assistance of ATLAS ti version 6 software ..Data use agreement form has

been signed between PI and NTP (Annex 4)

Ethical Consideration

This research proposal was submitted to the Ethics Review Committee (ERC) of Department of

Medical Research. The potential participants were invited and explained about the study by using

participants’ information sheet. Interviews were done with those who gave informed written

consents. Names of townships, local NGOs and participants were kept anonymous and

confidentiality and privacy of respondents were ensured at each and every step of research.

Permission form local NGOs to review their records were obtained.

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Dissemination of research findings

Dissemination meeting to present findings to key stakeholders were conducted on 26

th December

2017 at Inya Lake Hotel, Yangon. About 100 participants attended the dissemination meeting.

Participants included representatives from local and international NGOs working on TB and

MDR TB, TMOs from 43 townships. Findings were shared to participants and Flyer of summary

findings were distributed

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Findings

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Findings Background characteristics of MDR TB patients

Age distribution of MDR-TB patients

Age groups MHAA

townships

PGK townships MMA townships Total

<14 years 2 1 1 4

14-44 years 543 396 539 1478

45-64 years 228 226 215 669

>65 years 34 39 43 116

Total 807 662 798 2267

Gender distribution of MDR-TB patients

Age groups MHAA

townships

PGK townships MMA townships Total

Female 300 229 282 811

Male 508 433 516 1457

Total 808 662 798 2268

Treatment seeking pattern of MDR TB patients

Most of the patients sought for treatment of fever and cough at general practitioners (GPs).

After not relieving from the symptoms and chest X-ray showing tuberculosis, the GPs referred

them or they themselves went to Township Health Centre (THC) and then the patients took

treatment at THC as drug sensitive Tuberculosis. Some of the patients sought for treatment of

fever and cough at PSI DOTS clinics or Public-Private Mix DOTS clinics and took treatment at

these clinics as drug sensitive TB. Some of the patients were so ill that they were hospitalized to

General Hospitals and then referred again to THC to be treated as drug sensitive TB. A few

patients went to the specialist physicians and then they referred to THC to be treated as drug

sensitive TB.

The patients in this study who started taking treatment at 2015 and 2016 took drug sensitive

anti-TB drugs at THC or PSI DOTS clinics or Public-Private Mix DOTS clinics before the

suspect of MDR-TB. If there was no sputum conversion after 3 months among new and relapse

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cases, they were referred to Aung San TB Center or Latha TB Center for gene expert and

diagnosed as MDR-TB.

(ေဖဆသ၄) ကျနးေတားက၁ပတးေလာကးဖာ၊ဖာေတာ ေန၊လေဆခနးမြာ သျာျပေတာေဆစပးေသာကး၊ ေဆသျာထအကေနမသကးသာတာန ဆရာ၀နးကဓါတးမြနးသျာၾကညးဆ ထကး မြာသျာရကး ဓါတးမြနးမြာပေတျလဆလြငးသာယာေဆရလႊတးတယးျပမြေဒသႏရမြာသလပးစစး၊ျပမြေအာငးဆနးကသျာ

ေမ-ေအာငးဆနးကထပးသျာခငးေဆယဥးပါဖစးတယးဆတာဘယးအခနးမြာသတာလလြငးသာယာကေပာလကး တာလာ၊ ေအာငးဆနးေရာကးမြသတာလာ။

၄-လြငးသာယာကေနေပာတယးပထမတဘေဆ၆လေသာကးျပမြမသကးသာဖဆလေအာငးဆနးက ေဆရ တကးကတယး (MDRTB patient from FGD)

“Firstly, I suffered from cough and breathlessness, though no blood-stained sputum. I couldn’t

even work. So I went to private clinic (general practitioner). But the cough was not relieved. My

mother took me to the township health centre. Sputum examination was done and then

tuberculosis was diagnosed. Therefore, I took anti – TB drugs for 6 months. But I wasn’t relieved

and I had to take injection for 2 months and oral for another 6 months”

(MDRTB patient from FGD)

“(ေဖဆသ၃)

ထျနးေဆခနးမြာပတယး။အလပးထမြာခမးလာလကး၊ပလာလကး၊အလေတျဖစးတာ၊ေခာငးလညး ဆ။ အလပးလပးရငးနဖစးတာ။အတာနထျနးေဆခနးမြာသျာျပေတာစစးၾကညးတယး။သကသလပးတေသျတ စစးေပတယး။ဓါတးမြနးကေတာ ထနးေခာကးပငးမြာသျာရကးရတယး။

ေမ- ထနးေခာကးပငးဆတာေဆရလာ။

(ေဖဆသ၃) - မဟတးဘ။ေကာငးစေအာငး၊အပငးေဆခနး၊အဒမြာရကးျပေတာထျနးကေနတဘတ၊ေရႊပညး သာေဆရသျာပတယး။တဘေဆ၂ပတးေသာကးရတယး။တဘေဆ၂ပတးေသာကးျပထျနးမြာသလပးပနးစစး တယး။သလပးပနးစစးေတာရရတဘမဟတးဘတ၊ေဆယဥးပါတဘတ” (MDRTB patient from FGD)

“Respondent 3: I went to Tun clinic. I felt hot and cold again and again and then also suffered

from cough. I suffered from these symptoms at work and then I went to Tun clinic. They did

sputum and blood investigations. For chest X-ray, I did at HtanChauk Pin.

Interviewer: Is HtanChauk Pin a hospital?

Respondent 3: No, it means the clinic named Kaung Su Aung. It is a private clinic. After chest X-

ray and investigations, I was diagnosed as tuberculosis and I went to ShwePyiThar Hospital and

anti-TB drugs for two weeks. After those two weeks, sputum examination was done again and I

was diagnosed as multidrug-resistant tuberculosis.”


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“...ေဆခနး(အေထျေထျက)ထပးသျာေတာသကမသကၤာတအတျကးဓာတးမြနးရကးၾကညးလကးတယး။ဓာတးမြနးရကးၾကညးလကးေတာတဘပရြတယးေပါေနား။ရြတယးဆေတာသကေဆေပတယး။သကတခါထေဆေပတယး။အဒါနဆရာမေဒၚရတနာေကားဆေရာကးသျာတယး။သကစပေဆရမြာလညးထငးတယး။အပငးေဆခနးမြာလညးထငးတယး။ဆရာမဆေရာကးသျာေတာဆရာမကဟေပါေနားအရမးစတးထမြာမတငးမကဖစးေနတယးဆရငးေတာေဆရတကးလကးတ။အစာမဝငးဘဖစးေနေတာေလ။ဆရာမကေဆရတကးခငးလကးတယး။ေနာကးတေနမြာပခကးခငးေဆရတကးလကးရတယး။ေဆရမြာ၁၀ရကးေလာကးေတာေနလကးရတယး။ေဆရတကးေတာ ဆရာမကေဆေတျဘာေတျစစးတယးဘာညာစသညးဖငးေပါ။အခနးတနးကလညးအလေဆယဥးပါတဘပါလမေပာေသဘ။ဒေဆပဆကးေသာကးေပါဆျပေဆရကဆငးလာတယး။ဆငးျပတစးလႏြစးလေလာကးေနတအခါကေတာေသျေတျဘာေတျေဆေသာကးေနရငးနေသျေတျဘာေတျပါလာတယး။ေဆရကဆငးျပေတာ ေနာကးတေခါကးဆရာမဆပနးသျာတယး။ဆရာမကအဒေဆရကေနပရနးကနးေဆရၾကမြာေဆယဥးပါတဘ စစးလကးပါလေပာလအဒမြသျာစစးလကးေတာမြေဆယဥးပါတဘေပၚတာ။အေတာမြေအာငးဆနးကလႊတယး။ေအာငးဆနးမြာေဆစေသာကးဖစးတာ။” (MDRTB patient from FGD) “At the follow-up visit, the doctor (general practitioner) did chest X-ray to me with the suspect of

tuberculosis and I was diagnosed as tuberculosis. So I was given anti TB drugs by the

generalpractitioner and then I reached to Daw Yadanar Kyaw. She was a doctor at San Pya

Hospital who also gave service at private clinic. She told me to stay at hospital and then I was

hospitalized immediately. I stayed at hospital for 10 days and investigations were done. Till then

MDR-TB was not diagnosed. So I was told to continue same antiTB drugs as before. Within 2

months after being discharged, my sputum became blood-stained and so I went to Daw Yadanar

Kyaw again and she told me to do some investigations for multidrug resistant tuberculosis

(MDRTB) and then MDRTB was diagnosed. And then I was referred to Aung San”


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Community based MDRTB care

Table Treatment outcomes of MDRTB patients under the care of volunteers from local NGOS

MHAA

n(%)

MMA

n(%)

PGK

n(%)

Cured 175(67) 185(66) 224(63)

Completed 21(8) 29(10) 36(10)

Died 41(16) 46(16) 63(18)

Failure 2(1) 4(1) 5(1)

Loss to Follow Up 13(5) 8(3) 13(4)

Not evaluated 9(3) 7(3) 17(5)

261(100) 279(100) 358(100)

27

Recruitment and Performance of volunteers

Recruitment of volunteers and volunteers’ supervisors

The majority of community volunteers were recruited by the suggestion of basic health staffs and

TMO from Township Health Departments, especially by the township TB Coordinator and

particular midwives. Most of the community volunteers stated that they were selected by the

recommendation of the midwives because they were helping them in other health related

activities, such as immunization programmes and larva control. After recruitment process, the

volunteers had to attend the advocacy meetings and the trainings organized by each organization.

Volunteer supervisor are recruited amongst the community volunteers by each organization after

observing the efficiency as a community volunteer with the recommendation of TMO, HA, TBC

and BHS from related Township Health Department. There is special training for Volunteer

supervisorusing Community Coordinator (Community Supervisor guide) after receiving the

same package of training with community volunteers. “အကနးလအတျကးက မယက ကေနေခၚတအခါၾကေတာ၊ ေခၚခငးေတာ ရပးကျကးစကေလ လနာဖစးမယး ရပးကျကးေတျအမာဆေနရာေတျက ေခၚခငးတာေပါ။ အေတာဥစာေပေခၚခငးေတာ ကျနးမကရပးကျကးထမြာ လမႈေရလပးတယး။ လကးရြမြာလလမႈေရလပးတယး။ ၾကကးေခနလညးလပးတယး ဆေတာ ေနာကးကနးမာေရနပတးသကးျပ ရပးကျကးထမြာ တာဝနးလႊေပထာတာရြေတာ ရပးကျကးက ကျနးမကလႊတးလကးတယး ေထျအပးက” (FGD with Community Volunteers) “The volunteers are collected through the head of wards especially from the areas with highest

burden of MDR TB cases. As I have been involving in the health related activities in the

communities, I was chosen by the head of ward” (FGD with Community Volunteers)

The duty assignment to provide care to MDR-TB patient was arranged by the Community

Supervisor while conducting Quarterly Meeting participated by persons from NTP, THD and

organization.

“Q: ဆရာရပးကျကးမြာလနာအသစးေရာကးလာျပဆပါစအဆအဒသာဖျာဆရာမကအက (volunteer) ကေပာတာလာ? A: မဟတးဘ၊ Supervisor ကေနတဆငးေပါေနား၊အခနးမြာကျနးေတားတ၃လ၁ႀကမး Meetingမြာတစးခါတညးေဆျေႏျ ၾကတာေပါေနား။အဒမြာေပာတယးေပါေနားအဒမြာဒရပးကျကးမြာေတာအသစးေရာကးလာေပါေနားအေတာ Supervisor ကေနျပေတာအစးကရပးကျကးမြာမလအစးကတာ၀နးယလကးပါ (FGD with Community Volunteers)” “Q: If the new MDR TB patient was found in your area, the midwife informed you

(volunteer)? A: No. Indeed, it was told by the community supervisor at the quarterly meeting.

(FGD with Community Volunteers)”

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Table 1) Background characteristics of recruited and trained volunteers

Characteristics of volunteers Number Percentage

Organization

LNGO-1 269 31.1

LNGO-2 300 34.7

LNGO-3 295 34.1

Gender

Female 661 76.5

Male 203 23.5

Age (years)

17-24 166 19.2

25-35 224 25.9

36-45 228 26.4

46-66 246 28.5

Education

Graduated 103 11.9

Undergraduate 59 6.8

High School 617 71.4

Middle School 68 7.9

Primary School 17 2.0

Other Jobs 199 23.0

AMW/CHW 146 16.9

Members of orgs 192 22.2

Regular income 306 35.4

No job 21 2.4

Retired health staffs 199 23.0

Marital Status

Missing 300 34.7

Single 301 34.8

Married 260 30.1

Other 3 .3

Table 1.1 showed the background characteristics of recruited volunteers to provide community

based MDRTB care. There were 864 recruited volunteers by three LNGOs. The mean (SD) of age

was 37(12) years ranging from 17 to 66 years. Two thirds of them were female (76.5%)(Figure

1).The highest education status was high school (71.4%). One third of them had regular incomes

(35.4%) and 23% were retired health staff.

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Attrition of volunteers

0% 20% 40% 60% 80% 100%

LNGO 1

LNGO2

LNGO3

Active

Inactive

Figure 1) Active volunteers among trained volunteers for community based MDRTB care by local

non-governmental organizations in 37 Townships in Yangon (n=849)

Figure 1 revealed the low gap between the numbers of trained volunteers and active volunteers.

Reasons for attrition

Among 864 recruited volunteers,849 were undergone training and 68 (8%) of them were

inactive. The main reasons for attrition of volunteers included getting paid jobs, moving to another places,

and their health related issues.

”အခေပာငးသျာတထမြာ မလပးခငးပနမပါဘဂရတစကးန လပးေပၾကတယး။ တခကေတာလညး အလေပါေနား အေၾကာငးေၾကာငးန လဝပနးမေရာကးႏငးဘဆမြ ဖနးခတးလပးလကးေတာမြ အလမေတျ ေပါ ေဝေဝသျာတာ။ သတလပးခငးခတယး။ ဒါေပမယး မသာစရအပါအမးပါ ေပာငးသျာတအခါ ကေတာ….”(KII with volunteers’ monitor from Township 1) Among the volunteers who couldn’t do the activities anymore, actually, they had worked this job

very well. Because of many personal reasons, they were unable to work this job again although

they are knee on this job. But because their families move to other places….” (KII with

volunteers’ monitor from Township 1)

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Box 1 Functions of community volunteers in community based MDRTB care and treatment

support 1. Providing Evening DOTS to MDR-TB patients

2. Health Education and adherence counseling to MDR-TB patients and close contacts

3. Side effect monitoring of MDR-TB drugs

4. Home-based infection control

5. Household Contact tracing and referral

6. Assisting in monetary and nutritional support

7. Assisting in follow up visits

8. Recording and Reporting

Box 2 Functions of volunteers’ supervisors

1. Monitor and supervise the activities of volunteers randomly for the evening DOTS (right

dose, right time, right drug, right recording), and counseling, health education

2. Coordinating between health staffs from township health departments, MDRTB patients,

and LNGOs

3. Organizing monthly meetings with volunteers

4. Sharing of information to MDRTB patients and volunteers on monthly nutritional and

transportation allowance support

5. Sharing the tasks of volunteers for evening DOTS when volunteers are on leaves

6. Attending monthly coordinating meeting with LNGO

7. Attending quarterly coordinating meeting with THD, BHS, NTP and LNGO.

8. Collecting, validating and verifying the reporting forms from community volunteers and

submit to the LNGOs

Performance of volunteers

1. Providing evening DOT to MDR-TB Patients

There were total (2053) MDRTB patients registered at townships health departments where

CBMDRTB care projects implemented in 2015-2016. Of them, 1654(80%) were provided

evening DOT by community volunteers. Basic health staffs (BHS) including lady health visitors,

midwives, and public health supervisors were responsible for injection of drugs and provision of

DOT to MDRTB patients in the morning. Most of the patients received the injection of drugs at

their homes. There were exceptional cases which needed to give injection at the urban health

center, for example, MDRTB patients who stayed at hostel, and resisted receiving injection at

their places. Morning pills were taken at the health center after receiving injection. MDRTB

patients enrolled in 2017 didn’t have volunteers for evening DOTS. BHS gave the drugs for the

evening since in the morning. In the next morning when BHS reached the patients home, BHS

asked and checked whether the MDRTB patients took the pills or not. There was few MDRTB

patients who travelled outside their township during their treatment. They requested the BHS to

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give the pills for their travelling days. BHS gave pills for maximum three days. Sometimes, BHS

left the pills in the hand of patients’ families to provide them to the patients.

“၂ေခါကး၃ေခါကးေလာကးရြမယး၊ ကျနးေတားကမဘနေနေတာ အဒဆရာမကအေမကမြာျပ အေမကပ တကးခငးလကးတယး” (MDRTB patient from FGD) “It was two or three times when the BHS gave the pills to my mom to provide DOT to me”


Provision of evening DOTS to MDRTB patientsis the major function of volunteers. MDRTB

drugs were collected from BHS by volunteers for a week. Volunteers provided Evening DOTS to

MDRTB patients every day. Every evening around 6 pm, volunteers went to patients’ home to

provide evening DOTS. Almost all patients were aware of the time volunteers came to their

home.There were some male patients who went outside in the evening. There were also patients

who got back late from their jobs. In this case, volunteers contacted the patients by phone to fix

the time for taking drugs. Sometimes, it was difficult to adjust the best time for evening DOTS

between volunteers and patients.

“လနာအမးကသျာလရြရငးဟဘယးလေခၚမလဆေတာ၅နာရေလာကးသျာလရြရငးအစာစာျပရေလေဆတကးဖကမလျယးဘအဒါန၆နာရတစးေခါကးပနးလာအလ၆နာရ၆နာရချအေလာကးမြတကးရတယးဘာလလဆေတာသတကအမသမကအ၀တးေလြားျပမြပနးလာတယးပနးလာျပမြ၁၂နာရ၁ခကးေလာကးမြထမငးအတညးတအခါမၾကေတာ၂နာရ၂နာရချေလာကးမြထမငးစာတယးညေနကျနးေတားတက၅နာရသျာတအခါၾကေတာအစာနနညးနညးကပးေနတယးတစးခါတေလၾကရငးဟဟာစာခငးတယးဒဟာစာခငးတယးဆရငး၀ယးသျာရေသတယး”(

Volunteer from FGD)

“When I reached at the patient’s home around 5 pm, sometimes the patient just finished meal.

So, I need to come back to the patient’s home gain around 6 30 pm. Because of their daily

routine, they arrived late home, and prepared lunch very late. (Volunteer from FGD) There were patients who refused volunteers to provide them evening DOTS because of they

didn’t want people come to their places. They even didn’t like BHS coming to their working

places as they were afraid of people knew they had infectious disease.

“သတကနညးနညးေတာၾကကယးတယး။ဆရာမ၀ငးတာေတာငးမၾကကးခငးတာ။ဆရာမေတာငးမြသတဟဟာဖစးလလကးခရတာေပါေနား။တခာသစမးအပငးလမ၀ငးေစခငးတာ” (KII with BHS)

“Sometimes, patients didn’t like BHS to come to their home”. (KII with BHS)

2. Health Education and adherence counseling to MDR-TB patients and close

contacts

Before volunteers were assigned to each MDRTB patient, the health education and post-

diagnosis counseling was done to MDRTB patients by BHS. The counseling was taken place at

the patients’ home. The post-diagnosis counseling included explaining that the patients had

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MDRTB, the importance of taking treatment, the duration and side effect of treatment. When the

patients were confirmed that they would be provided treatment, the pre-treatment counseling was

also done at the patients’ home. It included the importance of infection control to prevent

transmission to other people, details about the MDRTB treatment course i.e. 20 months duration

of treatment, injections period, oral period, daily needs of taking drugs, the procedures for giving

consent to receive treatment i.e. consent by patients, BHS, and TMO. The family members of the

patients were also explained about them. When the patients gave consent to receive treatment,

the consent forms was filled and signed in front of TMO.

Daily, BHS conducted counseling to the patients regarding the side effects of the drugs. Patients

used to complain about their symptoms such as heart burn, bad smell of drugs, joint pain,

swollen of joint, loss of appetite etc. BHS encouraged them to be patient, and to eat nutritious

food. Most of the community volunteers stated that they gave health education to both MDR-TB

patients and family members while they are providing evening DOTS. The message included the

mode of transmission of disease i.e. transmitted through air, TB/MDRTB was treatable if the

treatment was received regularly, the possibility of infected to other people if it was not treated

properly, the importance of investigations for TB/MDRTB among the family members of the

patients, infection control measures such as how to dispose their sputum, the importance of

wearing mask while communicating with other people, and side effects of the drugs.

The community volunteers performed counseling to MDR-TB patients and family at every stage

of treatment.Counseling was done to all patients especially when patients complained about the

side effects of drugs and they wanted to stop taking drugs. Volunteers gave counseling to those

patients, as well as informed to respective BHS, TMO, and PO about patients’ condition.

Sometimes, peer to peer counseling was also done.

“Counseling ကေတာလနာတငးကလပးရတယးေဘထျကးဆကမာေတာ တခကေတာ ေဆေသာကးတအခနးမြာကေဆဒဏးကမခႏငးတာရြတယး မခႏငးေတာဒဟာကဆခနးတငးေအာငး

counselingလပးရတယးေနာကးဆမႏငးလရြရငးမႏငးဖဆတာသတလကးခတာကၾကညးျပေတာေပာကးသျာတလေတျကေခၚျပသဘာေတျေဘထျကးဆကခစာရလအလခစာရတၾကာထကသဒဟာေတျေသာကးလကးတအတျကးေပာကးသျာတယးေဆေတျေပၚယၾကညးေအာငးသတတနးကလတေနတစးမမရေအာငးေဘထျကးဆကေတျခစာရတယးအေတာအဒါေတျကသညးချပေတာေပာကးမြဖစးမြာအေရၾကတာကအသကးေနာကးသတေမြားလငးခကးေပါေနားတခမသာစရြတလဆပဆတာေပါ၊အကေလေတျအတျကးရြတယး၊သတအတျကးရြတယးအအတျကးကသတအာတငးျပေသာကးလာတယးေပါ၊သတကရြငးပျပေပာေတာကယး၁၀ခါေပာတာ

ထကးသတ၁ခါေပာတာကပထေရာကးတယးအလမနတလေတျက volunteer ေခၚျပေတာအလမလပးေပတယး” (KII with community supervisor) “Counseling was given to every MDRTB patient as the MDRTB drug has numerous side effects, and patients couldn’t bear it. Sometimes, we have to arrange to meet the MDRTB patients who successfully finished treatment despite the side effects with the patients who were reluctant to

33

continue treatment to share the experiences how they overcome the side effects.” (KII with community supervisor) “အစပငးေၾကာကးတအခါကေတာဒေဆေတျကမေသာကးခငးဘ၊ ဒဟာလညးခစာေနရတယး၊ဒေဆေတျလညးမေသာကးခငးေတာဘ၊ေသတာပေကာငးတယးဆျပေတျ တာေပါ” (MDRTB patient from FGD)

“At first, I am much worried to suffer the side effects of the drugs. I even thought that it would be better to die.” (MDRTB patient from FGD)

However, despite the counseling, there were patients who were lost to follow and stopped

treatment because they didn’t tolerate the side effects of the drugs. Q- အခနအစးမေပာသျာတာcounselingလပးတယးတခ defaulter ဖစးသျာတယးေပါေနားအလလမေတျကဘယးလအပးစေတျအဖစးမာလ။

A-ဆရာ၀နးသတေတျကေတာcounselingလလပးလမရသတကဒအေၾကာငးက HE ေပေတာလ ပသတယးcounselingလပးေတာသတကအာေပတာေတာလကးခတယးသတကယးတငးကဆရာ၀နးဖစးေပမအတျယးတာမေနတာသတရ ေဘထျကးဆကကမခစာႏငးဖ၊ေဆရေဘထျကးဆကကမခစာႏငးဖ၊ဆကးျပေတာမကခငးေတာဖ၊ေဒါကးတာတစးေယာကးဆေနာကးဆကတာလကးလႊတးလကးရတာေပါေနားေနာကး

ဆရာၾက TMO ကယးတငးသျာတယးအစးမ HA တနသျာတယးေနာကးဆဘယးလမြမရဖ၊လကးလႊတးလကးရတယး(KII with community supervisor)

Q: As you said, although the counseling was done, there were people who were lost to follow or

refused to continue treatment. What kind of MDR TB patients are they?

A: Medical Doctors (MDR TB patients)! They know about the disease much more than us. So, it

was difficult to make counseling to them. They are afraid of the side effects of the drugs. There

was one medical doctor who failed to continue taking treatment although the proper counseling

by TMO. (KII with community supervisor)

“ေနာကးတစးေယာကးကေတာသကေကာငးသာကရြငးလသငးတယးသကပစရမးတယးသကစာသငးတာဆ

ေတာေလကေလေတျအတျကးဒါေပမသကကယးထကးပဒဟာေတျကသတယးသကလငးေပၚမြာဒ page ကရကးျပေတာအကနးဖတးထာတာ Facebook ေပၚမြာဒေဆကေသာကးျပေပာကးသျာတလရြသလမေပာကးေသတလလရြမယးဒေဆေတျကေဘထျကးဆကမာေတာတခဗမာေဆတငးရငးေဆနကလရတယးေပါ၊တခဓါတးစာနကတယးအလမသကအမာၾကေတျထာတယးေလအထကမြသၾကကးတဟာကသေရျ ခယးတာေလအလနေဆဆကးမေသာကးေတာတလနာေတျလရြတယးတခကေတာလမသာစအေခအေနေၾကာငးေဆကဆကးမေသာကးေတာဘနပကးသျာတလန

34

ာေတျရြတယး”(KII with community supervisor) “The next one was a teacher. He knows very well about the disease. He explored the information

on MDR TB through internet. He believes that MDRTB can be cured with traditional medicines,

and he chose not to treat with MDRTB drugs.” (KII with community supervisor)

Side effect monitoring of MDR-TB drugs

Some community volunteers stated that there are several side-effects during the treatment, so

they were always monitoring the side effects what the patients suffered using checklist forms.

Generally, side effects were recorded and reported using checklists by volunteers every week.

Almost every day, they asked the patients whether they suffered any side effect, or improvement

of symptoms. If the patient suffered from mind side effect, the community volunteers counseled,

explained, reassured and gave health education to patient and family. In case of suffering severe

side effect, the community volunteers informed step by step to the Midwife, TBC, TMO and also

to respective organization and then if needed, they have to refer the patients to the Aung San TB

hospital.

Side effects reported by MDRTB patients to community volunteers* (n=449)

Reported Side Effects Number Percentage

Hearing Defect 12 2.7

Tinnitus and Vertigo 12 2.7

Neuropathy 74 16.5

Hypokalaemia 0 0.0

Depression 9 2.0

Hallucination 4 0.9

Hypersensitivity 0 0.0

Hepatitis 5 1.1

Nausea 42 9.4

Vomiting 23 5.1

Joint Pain 189 42.1

Goiter 0 0.0

Gastritis 17 3.8

Anxiety 13 2.9

Diarrhea 2 0.4

Feeling worse than before 8 1.8

TB symptoms 6 1.3

Dyspnoea 2 0.4

*as of March, 2017, Reported by INGO 3

35

Average number of side effect monitoring in a month for MDRTB patients by volunteers*

Average number

1 time 12 2.7

2 time 15 3.3

3 time 8 1.8

4 time 388 86.4

Not recorded 26 5.8

Total 449 100.0

*as of March, 2017, Reported by INGO 3

Joint pain is the most common symptoms MDRTB patients suffered during the treatment. Other

common symptoms they reported during interviews were tinnitus, diarrhea.

“ေဆေတျေသာကးျပကယးေတျလကးေတျကကးတာေပါ။၆လ၇လအထကယးေတျလကးေတျကကးတာ၊အဆစးေတျပတးကမတတးပ။ေသေတာငးေသခငးတယး။ေတားေတားခစာရတယး၊” (MDRTB patient from FGD) “After taking drugs, I suffered from the severe joint pain for six to seven months. It was dying.” (MDRTB patient from FGD) “အဒေဆေသာကးျပတာန ေခဆစးလကးဆစး ကကးလာတယး၊ ေတားရတနးရအမငးေတာငးတကးလမရဘ။ ေလြခါထစးကေလဘကးသျာရတယး” (MDRTB patient from FGD) “Because of the joint pain due to the MDR TB drugs, I could not even make a step to the stairs. I have to keen down.” (MDRTB patient from FGD) “ေခေထာကးေတျေရာငးလာတယး။ ဆရာမကလမးမာမာေလြ ာကးတ၊ ေရတစးေန၆ပလငး ေသာကးတ။ ေရာငးတာကသျာမယးတ” (MDRTB patient from FGD) “My leg becomes swollen as the side effect of MDRTB drugs”. (MDRTB patient from FGD) “ဖနးလြမးဆကးျပေတာသမဆရာမကေပာပတာေပါ။သမအနးတအခါကရငးေဆေသာကးေသာကးျပခငးအနးတာတ၊အစာစာျပအနးတာ၊ဆရာမသမအလဖစးတာဆသမအတာဆဘယးလမစာန၊ေဆနအစာနနညးနညးေလချစာ၊ေရမာမာေသာကးအလမဆရာမကပနးပနးျပေပာပတယး” (MDRTB patient from FGD) “I phoned to the Sayama (BHS) telling her about the side effects of the drugs. I vomit frequently after taking the drugs. Syama (BHS) instructs me what to do.” (MDRTB patient from FGD) “Refer ကကျနးမတလပးတာ။ volunteer ကကျနးမတကပလပးတာ။ကျနးမမြာ volunteer

36

တစေယာကရတယဆရငဆရာမေရသကေတာဘယလျဖစေနတယဘာညာဆရငကၽြနမလမးလပတာေပါေနာ။သညေနပငးသြားတAခနကရငျဖစတာဆရငေပါသတ႔(volunteers)ကေတာဒါရကမလပပါဘး။ကၽြနမတ႔ကလပပါတယ။” (KII with BHS) “Refer of MDRTB patient for the side effect was done by BHS. Volunteers just informed us

about the patient.” (KII with BHS)

3. Home based Infection Control

Infection control was done every 3 months at LNGO 1 and LNGO 3, and monthly at LNGO 2, and

the checklists have to be reported to the organizations. Through infection control checklist,

number of family members, including under five children, pregnant mothers and over 60 years

people, were recorded. Moreover HIV testing done or not, diabetes status of the patients and

contact TB examination done or not were also recorded.

BHS and patients stated that infection control activities were mutually done by BHS and

volunteers. Most of patients stated that volunteers asked them to wear masks, to stay

separately with other family members, to dispose their sputum properly using the provided

sputum cups to prevent the spread of disease to other people in every day basic.

Table 6.4.1 Numbers of reported infection control checklists throughout the treatment course

of MDR TB patients by LNGOs (reported by LNGO1 and LNGO3)

Reported infection control

checklists

LNGO 1

(N=558)

LNGO 3

(N=693)

Not reported yet/ Never reported 76 187

1 time 23 123

2 times 22 82

3 times 31 80

4 times 78 73

5 times 83 67

6 times 87 51

7 times 109 25

8 times 49 5

Total 558 693

“စစျဖစတနးကသလပခြကကေရေႏြးေလာငးထညလကတယ၊Aမသာမာသြနတယ၊AတာဆလတငးလတငးစစလကရငAေျဖကAေကာငးခညးပထြကတယ၊ဆရာမဆသေဘာကတယ၊ က ြနမ (MDRTB patient)Aရမးေတာတယ၊စာAပေတြဘာေတြမာေသခာမတထားတယ။ဘယAခနဘယAခနေဆး ေသာကတယဆတာ။ျပးရငတစလတစခါစမးတယ။” (MDRTB patient from FGD)

“ I pour hot water into my sputum cup, and throw into the toilets. Sayama (BHS) always praise me that I

follow their advices.” (MDRTB patient from FGD)

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4. Household Contact tracing and referral

They referred 578 close contacts of MDRTB patients after proper health education for further

diagnosis of TB or DRTB. Out of the referred patients 48 (8%) were diagnosed as TB and 14

(2%) were diagnosed as DRTB .Most of the patients stated that volunteers as well as BHS asked

their family members for sputum examination. BHS stated that they performed contact tracing

and referral among contacts of MDRTB patients using referral forms. During active mobile team

visits to the communities, contacts of MDRTB patients were asked to check for TB symptoms,

and further diagnosis. Among contacts, children who were under five years of age and over sixty

years of age were considered as prioritized group. There were contacts who failed to do sputum

examination because of they were unable to produce enough sputum.

5. Assisting in monetary and nutritional support

Patients stated that the BHS phoned them to collect nutritional support at township health

department every month. Volunteers collected the lists of MDRTB patients who received the

monetary and nutritional support, and informed to the organization to record in the registers.

6. Assisting for follow up visits

At 6th

, 10th

month of treatment, MDRTB patients had to undergo follow up investigations

including chest X ray, sputum examination, and blood tests. Patients and TBC stated that

volunteers reminded patients for follow up visits. In some cases, they prepared referred notes for

investigations.

7. Recording and Reporting

Community Volunteers carried out recording and reporting such as daily DOT record, Side

Effect Checklist, Infection Control Checklist.

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Roles of volunteers Some key informants stated that health education activity of volunteers was crucial for treatment

adherence and completion. They explained that health education to MDR TB patients was

essential because of long duration of MDR TB treatment, possibility of suffering side effects and

risk of transmission to others. Moreover, few key informants highlighted health education

provided through volunteers was more effective because he/she stays in that community and gets

more opportunity to deliver health messages not only to MDR TB patients but also to the general

community.

”အဓကေတာ HE (health education)ပေပါေနား။ Side effect ကေပာရငးလညး HE ေပာရတာပ၊စကာတချနးမြ မေပာပန ေရာအငး ေသာကးဆလေတာ မဖစးဘေလ။ အဒါဆလရြရငး အလနာကလညး ေရာေသာကး အငးဆလရြရငး ကယးဘာသာေသာကးလညး ရတာၾကက၊ အဒါဆ သလညး ေသာကးခငးေသာကးမယး မေသာကးခငးမေသာကးဘေပါ။ ကမတရ HE ကအဓကပ။”(KII

with volunteers’ monitor from Township 1)

“The main thing is HE (health education). When we talk about the side effects of the drugs,

we also give HE. It does not make sense to give anti TB drugs to patients without talking a

word. They can take drugs by themselves. But they might be taking drugs or not. The most

important one is HE by volunteers to the patients”(KII with volunteers’ monitor from

Township 1)

“HE ေပမယးဆလညး ဒပညးသလထထက လကပ ပညးသလထထက ပနးစမးဝငးျပေပတာ ထေရာကးတယးဆရာ။ ဥပမာ သတက ေဆတကးခနးမြ မဟတးဘ။ ေစသျာသျာ၊ ရပးကျကး ဓမၼာရမြာ ကစၥရြလ ဥပသးပသျာေစာငးေစာငး လစမလရြရငး HE ေပတာမ၊ ဒ MDRTB ဆတာ ဘာလ။ ဘာက ေခၚတာလ။ ဘာလပးရတာလ အကေန အစချပ ေပာတာ အလေပာတာေလေတျရြတယး။ ဒါ HE ေပတာလညး ပညးသထကပေပါ။ ဒရပးကျကးထက လေတျနပ ရပးကျကးထမြာ HE ပနးေပတ သေဘာပဆေတာ ထေရာကးတယး ဆရာ။”(KII with volunteers’ monitor from Township 1)

“The health education is effective when it is given to the communities by someone who is

from the same communities. Community volunteers talk about MDRTB not only to the

patients and families at the time of providing DOTS, but also at the time when people gather

eg. in markets, in religious activities etc. So, I must say that, the HE by community

volunteers is effective.” (KII with volunteers’ monitor from Township 1)

Some volunteer’s supervisors highlighted evening DOT by volunteers was necessary and

supportive to assist BHS who were overburden with several tasks. They also mentioned BHS

appreciated roles of volunteers for CB MDR TB. However a few mentioned about challenges

of volunteers in initial phase especially for coordination with BHS.

”ကမတအမငးေပာမယးဆရငးေတာ ဒညေနပငးေဆတကးတအလပးက လကလအပးတယး၊ ဘာဖစးလလဆေတာ အပငးဆရာမေတျကလညး အလပးအရမးမာတယး။ ဆရာမေတျမြာ တာဝနးေတျ တအာပတယး။ ပတအခါကေတာ ဆရာမေတျအေနနလညး မနကးပငးေပါ သတရ တခာ ကာကျယး ေဆထေတျ ဘာေတျနသတရ အလပးေတျ အရမးမာတအခါ ကမတ အဖျ စညးေတျ ခလ ..ကမတအေနနလညး သတမေရာကးႏငးတ လနာအမးေတျကဆ ကမတ ကလညး သတငးအခကးလကးပေပေနတအတျကး သတ (ဆရာမေတျ) အရမးဝမးသာတယး။ ဘာဖစးလလညးဆေတာ သတ မအာတၾကာထကေန ကမတက အလ ပမြနးလ

39

လပးေပေနတအခါကေတာ သတက တဖကးတလမးကကေပေနတအတျကး သတကလညး ကမတက ၾကကးတယး။ ကမတကလညး အခလညေနပငး ေဆတကးေပတအတျကး လနာေတျကလညး ေရာဂါသကးသာေပာကးကငးလာတယး။(KII with volunteers’ monitor from Township 1)

“We believe that the evening DOTS is necessary. Sayama (midwives) are very busy, and they

have several tasks. eg.in the morning, they are engaged with immunization activities, while

they are busy as we inform her about the MDRTB patients, they are happy. They accept that

we are supporting them. Because of the provision of DOTS by us, MDRTB patients become

healthy” (KII with volunteers’ monitor from Township 1)

“သတကလစတးပါလကးပါနကလပးရတယးတစးခvolunteerေတျဆသတရတ၃၀၀၀၀သတမသ ရဖေပါေနားလမးစရတးလတယးဆလတစးလတစးခါေဆေသာကးခငးေအာငးၾကကးဥတ၊အာေဆတ၊ပနးသတ၊ငြကးေပာသတ၀ယးေပတယး၊ေနာကးသတကယးတငးစတးပါ၀ငးစာလလာေတာမသအဒမသာစေတျကလနာမသာစကသတမသာစေတျလဘသတကကေတာအကနးေပာတယးသတရ အခကးခကကေနားတကသတဆကမြတဆငးဒလနာေတျဟာကပနးၾကာရတာေလ” (KII with volunteers’ monitor from Township 1) “Some volunteers could not even use the incentives 30000MMK they received. Sometimes, because of their patients’ needs, they used it to compensate the travel charges. Also they bought some foods such as eggs, apple and banana for patients. Because of their good will and interest, patient’s family became like their family and patient tells every problem to them. We know about these through volunteers. (KII with volunteers’ monitor from Township 1)

Challenges

Previously, there was a weak coordination between volunteers and Basic Health Staff which

made their activities difficult. Main challenge was building trust and BHS did not want to

hand over MDR TB patients to volunteers for evening DOT. However, after sometimes, BHS

realized that volunteers are assisting their workload by visiting MDR- TB patients’ homes

and monitoring side effects of drugs.

”အခေနာကးပငး ေတားေတားေတာ အဆငးးေပလာတယး အခကးခမရြဖ၊ စလပးလပးခငးကေတာ ခာလပတးက ရမးေနတာဘ ကယးကတငးေတာငးမလပးခငးဘ ထျကးေပခငးတအဆငးထဖစးတယး။ ကနးမာေရဌာနက ဆရာမ ေတျကလ ကေနားတေပၚ အယအၾကညးမရြဖ၊ သတက အရငးဒလနာကကငး ရေတာ ကေနားတ ညေန volunteer ကေပလကးရငးဘ သတအတျကး ပသာနာဖစးလာ မလာေပါ၊ အေတာ သတက volunteer က လနာမေပဖ၊ ေနာကးဆ သတကမႏငးမနငးေတျဖစးလာေတာမြ ေနာကးဆ volunteer ကေပတယး။ ကေနားတအေပၚ အယအၾကညးမရြဖ၊ အဓက သတန ပသာနာဖစးမြာစလေပါေနား၊ သတဌာနက volunteer ကညေနပငးၾကညးခငးမြ သတရ ေဘထျကးဆကကသႏငးမယး။ လနာအေၾကာငးလသရမယး၊ တစးေယာကးထ လပးတာထကး ၂ေယာကးေပါငးလပးေတာ သကးလသကးသာမယး ထေရာကးမယးေပါေနား အလမေပာလာ ေတာ အခကေတာမြ လကးတျလပးလာရင:းနမြ သတလအရမးအကညရမြနးသေတာ အဆငးေပသျာတယး အစက သတအတျကးပသာနာဖစးမြာစလ သတဖာသာ cover လပးျပေတာ လနာလမေပဖ။”(KII with

40

volunteers’ monitor from Township 2)

“Now, we (volunteers) are convenient working for CB MDRT care. When we start working,

there are many challenges as things are complicated. Sayama (BHS) from health centers

didn’t believe in us. If we provided evening DOTs to the MDRTB patients under their care,

they were afraid that there would be problems and troubles, and they didn’t want us to work

with them. Now, they have noticed that we can support to them, and share the burdens of

their tasks. So, now it is more comfortable than before” (KII with volunteers’ monitor from

Township 2)

Success of CBMDR TB care

Most key informants expressed the success of CB MDR TB care as follows:

• ReduceworkloadofBHS

• Ensure evening DOT for MDR TB patients

• Health education and Adherence counseling MDR TB patients

• Psycho social support MDR TB patients

Reduce workload of BHS

Most key informants from public sector and local NGOs convinced that

activities of community volunteers can reduce the workload of BHS.

အာသာခကးကေတာကမတ Midwife ေတျကအမြနးအတးငးေပာရငး ၁ရကး၂ေခါကးဆတာေတာ မလပးေပႏငးဘေပါ။သတကကယးကယးစာဝငးထမးေပတယးဆေတာလနာအတျကးေတာအကရြတာေပါေနား။တကယးတမးသျာမယးဆလနာအတျကး Dose လညးမြနးမယး။ အခနးမြနးမြနးလညး ရမယး။ျပေတာသျာၾကညးရငးန ဆရာမကမေပာရလကးတစကာေတျကအ Volunteer ကေပာပ လ ရတယးေပါ။ဥပမာဆရာမေဆထျပတအခနးမြာသတကမတာရြမယး။အစာမဝငးတာဖစးရငးဖစးမယး။ေပာခငးမြေပာပမယးေပါဆရာ။အဒါမေလေတျကေပာပလးကးတအခါမြာအVolunteerကေနျပေတာဒကလာတယးဆရာ။၁ပတး၁ခါသတလာတအခးနးမြာကမတကေပာလရတယး။(KII

with BHS-Township 1) “The strengths of using community volunteers in CB MDRTBC were BHS can reduce the workload. To be honest, we (BHS) couldn’t provide DOT to MDRTB patients several times. As the volunteers assist us, the patients have many benefits. The right dose of drugs can be given to the patients. Besides, patients can talk to volunteers especially the issues they are reluctant to talk to us. (KII with BHS- Township 1)

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Ensure evening DOT for MDR TB patients

Community volunteers provided evening DOT to (1656, 81%) MDR TB patients in 2015-2016in 37 townships of Yangon Region. Majority of respondents (both BHS and MDRTB patients) convinced evening DOT by volunteers was necessary. Some BHS stated that volunteerssometimeshelpedtoprovidemorningDOTifBHSwereengagedwithothertasks.

ကာကျယးေဆထရကးက၁ရကးကေန၇ရကးရြတယးဆရာ။ကမတကအဒေနေတျမကေတာကမတနနအခနးေႏြာငးသျာမယးေလဆရာ။ထေဆရကးသာပမြနးရေအာငးေပထတာ။ေသာကးေဆအခနးကေတာကေလေတျ(volunteers) ကမနကးပငးလညးကမကကေပတာရြတယး။

(KII with BHS Township 1) “The immunization was given in the communities in the first days of every month. On that day, we are late to provide morning DOT to the patients, where some volunteers help us providing morning DOT. (KII with BHS Township 1)

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သတလာေတာပအဆငးးေပတာေပါ၊သတလာေတာသတကယးတငးတကးသျာေတာကယးအတျကးစတးခရတယးကယးဖာသာေသာကးရငးေမရငးေမသျာမယးသတကတခအာရေရာကးသျာရငးေဆေသာကးတအခနးလႊရငးလႊသျာမယးသလာေတာ၅နာရဆ၅နာရပမြနးေသာကးဖစးတာေပါ၊ (FGD with MDR TB patients Township 3) It was very good that volunteers come and provide DOT at our home. By ourselves, we can forget to take drugs. Now, because of the volunteers, we can regularly take the drugs at the exact time every day. (FGD with MDRTB patients- Township 3)

ကမတ အမငးေပာမယးဆရငးေတာဒညေနပငးေဆတကးတအလပးကလကလအပးတယး၊ဘာဖစးလ လဆေတာအပငးဆရာမေတျကလညး အလပးအရမးမာတယး။ ဆရာမေတျမြာ တာဝနးေတျ တအာပတယး။ ပတအခါကေတာ ဆရာမေတျအေနနလညး မနကးပငးေပါ သတရ တခာ ကာကျယးေဆ ထေတျဘာေတျန သတရအလပးေတျ အရမးမာတအခါ ကမတ အဖျ စညးေတျခလ..ကမတအေနန လညးသတ မေရာကးႏငးတလနာအမးေတျကဆ ကမတက လညး သတငးအခကးလကးပေပေနတအတျကးသတ (ဆရာမေတျ) အရမးဝမးသာတယး။ ဘာဖစးလလညး ဆေတာ သတမအာတ ၾကာထကေန ကမတ ကအလပမြနးလ လပးေပေနတ အခါကေတာ သတကတဖကးတလမးကကေပေနတအတျကး သတကလညး ကမတ က ကးတယး။ကမတ ကလညးအခလညေနပငးေဆတကးေပတအတျကးလနာေတျကလညးေရာဂါသကးသာေပာကးကငးလာတယး။

(KII with volunteers’ supervisor from Township 1)

“From our opinion, the evening DOT is essential. Because the BHS were too busy with several tasks eg. Immunization to children in the communities in the morning. As we help them (BHS) reaching to the MDRTB patients where BHS are hardly reach, BHS are happy. Because of evening DOT by volunteers, MDRTB patients improve. (KII with volunteers’ supervisor from Township 1)

Health education and Adherence counseling MDR TB patients

Community volunteers provided health education and adherence counseling to MDR TB patients and referred 578 contacts of MDR TB patients. Among referral, 48 (8%) were diagnosed as Tb and 14 (2%) were diagnosed as Drug resistant TB. Both BHS and volunteers stated that health education activity of volunteers was crucial for treatment adherence and completion. Key informants explained that health education to MDR TB patients was essential because of long duration of MDR TB treatment, possibility of suffering side effects and risk of transmission to others.

Moreover, few key informants highlighted health education provided through

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volunteers was more effective because he/she stays in that community and gets more

opportunity to deliver health messages not only to MDR TB patients but also to the general

community.

HEေပမယးဆလညးဒပညးသလထထကလကပပညးသလထထကပနးစမးဝငးျပေပတာထေရာကးတယးဆရာ။ဥပမာသတကေဆတကးခနးမြမဟတးဘ။ေစသျာသျာ၊ရပးကျကးဓမၼာရမြာကစၥရြလဥပသးပသျာေစာငးေစာငးလစမလရြရငး HE ေပတာမ၊ဒ MDRTB ဆတာဘာလ။ ဘာက ေခၚတာ လ။ ဘာလပးရတာလအကေနအစချပေပာတာအလေပာတာေလေတျရြတယး။ဒါ HE ေပတာ လညးပညးသထကပေပါ။ဒရပးကျကးထကလေတျနပရပးကျကးထမြာ HE ပနးေပတ သေဘာပ ဆေတာထေရာကးတယးဆရာ။”

(KII with volunteers’ monitor from Township 1)

“Health education is more effective through community volunteers. They can often meet with people at market, social affairs, and religious affairs. They can share about MDR TB, what is this disease, how it is transmitted etc. It is effective that if health education was given by volunteers to the communities where they live. (KII with volunteers’ monitor from Township 1)

Psycho social support MDR TB patients

Most MDR TB patients appreciated psychological supports from volunteers especially while

they are suffering from side effects of drugs and social stigma.

တစးပတးမြာ၄ရကးေလာကးကကယးကယးကစတးဓါတးကတယး၊ေဆစေသာကးရငး၊ကယးကတနးတဆကးဆတလရြမြႏြစးးသမးအာေပတလရြမြဒေဆကဆကးေသာကးခငးတယး၊ေရာဂါေပာကးခငးစတးကဖစးတယး။”

(FGDwithMDRTBpatientsTownship2)

“At least 4 days a week, I am depressed. I feel better if there are people who are not discriminating us, and encouraging us. (FGDwithMDRTBpatientsTownship2)

Challenges

Although there are many successes, some challenges were also identified:

Weak coordination between LNGO and BHS for supervision of volunteers

Refusal of patients to take treatment Some BHS pointed out patients did not appreciate their care and more rely on LNGOs or volunteers

who provided them monetary supports Some BHS stated that they gave priority for selection of volunteers would usually assist them However, few key informants concerned volunteers would not assist them for other health activities

which did not pay any incentives (eg. Immunization, AN care) Few BHS could not provide injection at MDR TB patient’s home and very few community

volunteers were absent to provide evening DOT

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ကမတကေဆထ၊ေဆတကး၊HE အာေပါကးေအာငးေပာရ၊ဒါေပမသတ (လနာ) က ကယးကမကးစထ မမငးဘ၊ပကးဆေပတသဘေကဇတငးတာ။တခVolunteers ေတျကလ ကယးေတျေပာတာဂရမစကးဘေလ။ကမတကသတကsupervision မြ မလပးရတာ။ သတမြာကသတ supervisor သပးသပးရြတယး။

(KII with BHS)

“Although we (BHS) made big effort to take care for the MDRTB patients, they did not

appreciate us. They only thanks to people who pay money support for them (INGO).

Sometimes, volunteers did not care about us as we cannot supervise them. They have their

own supervisors.” (KII with BHS)

Refusal of treatment

Some volunteers and key informants mentioned that few MDR TB patients refused to take

treatment even after repeated counseling.

ကျနးမလနာတစးေယာကးရြတယးေဆကျပခါနေနျပ follow up သျာဆတာ မသျာေတာ ေဆလမေသာကးေတာဖတ ဆရာမေတျေရာ၊ မနယးအပငးဆရာေတျေရ ာ လာဆငးေပာ သကမေသာကးေတာဖတ သအေဖကလ အေရာဂါနဘဆသျာ သတရျာမြာဘသကလ ဒေရာဂါနဘအေသခမယးတသမသာစကလမေပာေတာဘ။ (FGD with volunteers)

“I have one MDRTB patient who is almost complete the treatment. He refused even for the follow up visits. The team from township health department makes counseling to him to finish the treatment. However, he resists to continue treatment, and his family also fails to make it. “ (FGD with volunteers)

Few key informants also pointed out some inappropriate behavior of patients made volunteers

embarrassed.

A: တခ လနာက ဆတယး volunteer အေပၚမြာ... Q :ဆတယးဆတာက ဘယးလမလ A: ဆတယးဆတာက ဟဟာေပါ character ေပာရမြာေပါ။character ေလေတျပါတယးေပါေနား Q : character ဆတာ ဘယးလမက ေပာတာလ၊ ကေနာက ရြငးပပါဥ A :အတညးပ ေပာလကးရမလာ (ရလကး)၊ တခလနာေတျက အလ ေဆတကးတဆရာမေလေတျက ရညးစာစကာေပာတာ။ အလမေလေတျဆရငး ဒဆရာမေလေတျန ဆ အဝငးအထျကးသပးမေကာငးဘ။ ထနးေပရတာ ရြတယး။တေယာကးဆ တစးအမးထမြာ သတစးေယာကးထပ။ အမးၾကကလညး ကယးတယး။ ခၾကကလညး အရြညးၾကဝငးရမယးဆရငး သနေနတငးပမြနးေတာ မဖစးဘေလ။ မသာစဝငးေတျက အပငးအလပး သျာေနတာဆေတာ….

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A: Some patients are bad on volunteers Q: How? A: Their character Q: Character? How? A: (Laughing) Some male patients make a propose to young female BHS. It was not good for the BHS. You know, there is a male patient who lives alone in a big house. For him, it is not good for BHS to take care of him at his home every day. Other family members are going out for work

Incentives or identified volunteers…

About one third of BHS concerned incentives for volunteers may have negative impacts.

They expressed that few volunteers were not willing to help their activities other than MDR

TB after getting incentive from CB MDR TB projects. Such issues are especially related to

volunteers who were AMW or CHWs previously.

However, some BHS revealed that incentives from CB MDRTB project helped their existing

volunteers to assist their activities.

A: အခ Larva Control ေတျလပးေနျပ။ DHF အတျကးေနား။ Abate ခတးတေနရာမြာ လညးသတပါရမယးေလ။အကနးသငးထာျပျပဆရာ။ လဥေရသနးေခါငးစာရငး ေကာကးပါရမယး။ အခကမတဟဟာေပါ JE စာရငးအတျကး လညး ကမတ ကေလစာရငးေတျလညးေကာကးေနျပ။ဆရာမကကညေပဖေလဆရာ။အဒါေတျမြာလညးအကနးလပါရမယးေလဆရာ။မပါႏငးဘဖစးေနတယး။သတကညေန၅နာရထမြတကးရတဥစၥာကမနကးဖကးမြာလာမကေပႏငးဘ။

Q: ၁၀ေယာကးမြာဘယးႏြေယာကးကလာမကေပႏငးဘလ။

A:ဆရာအဒါေတာ။၁၀ေယာကးမြာ၅ေယာကးေပါဆရာ။ ဒမြာကမတမျမးမေခၚလကးျပဆရငးေတာအကနးေပၚခလာတာဘဆရာ။

A: Now we start Larva Control activities for DHF prevention. Volunteers are expected to

involve in those kinds of activities (eg. Abate). They all are well trained. Eg.in Census data

collection, JE campaign, etc. We need the help of volunteers. But they could not. They have

to provide evening DOT only in the evening. But they fail to help us in the morning.

Q: Out of 10 volunteers, how many fails to help you?

A: Half. 5 out of 10. But when we invite them for refresher trainings, they all attended.

BHSအလပးမာေတာ volunteer ကMDR TB အတျကးကေပႏငးတယးေပါ။ဒါေပမ ….BHS

ခငးတာကတခကေတာသတမလပးခငးၾကဘ။ဥပမာ BHS က ဒမြာတဘလနာေပာကးေနတယး သျာရြာေပပါအဆ အနညးအကငးေပါ၊ တေယာကးႏြစးေယာကးေလာကး ေတာ ရြာေပတယး၊ လတငး ကေတာမလပးေပဘ။ (KII)

“As BHS were busy, volunteers can help for MDRTB care. But sometimes, volunteers refuse to do what BHS have requested. For eg. BHS requested volunteers to trace lost to follow up TB patients, not every volunteer willingly help BHS. (KII)

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Providing Injection

Another challenge is providing injection for MDR TB patients. There are few cases that

injective were not given at patients’ homes.

(၅)- ေဆရရကးခနးတကးတအခါတခါတေလကရငးထေပလကးတယး။ေဒသႏရမြာပ။

(၇)- ရကးခနးတကးတေနကေတာ အေစာၾကသျာရတ ေန ကရငး ေဒသႏရမြာပ ထေပလကးတယး။

(၁၂)- ေဆရရကးခနးေဒသႏရက သျာရမယးဆရငး ဆရာမက ေဒသႏရထ လကးထေပတယး။ ေဆအခနးေစာငးသျာမြာစလ၊ လကးခတယး၊ ဆကးကာနဘာန သခမာလာတယး။လာျပေဒသႏရမြာပထတယး။ဘယးေနရာထထမကးရညးကေအားငရတာပ။ဘယးလမြဟနးမေဆာငးႏငးဘ။

(FGD with MDR TB patients)

(5): Especially on the day of follow up visits at urban health center, injection was given at

the urban health center.

(7): Injection was given at the urban health center on the day of follow up visit to urban

health center.

(12): Sayama (BHS) gave injection at the urban health center when we have to go follow

up visit at the urban health center not to delay the time of injection in the morning. As

injection was painful, it always tears. (FGD with MDR TB patients)

လကးရြကေတာတစးေယာကးပရြတယး။ကနးတသေတျကအးမးမြာပထၾကတာ။အခတစးေယာကးဒကေခၚထတာကသကကေတာအမးပငးမရြဘ။အပေလပဆေတာ အမးက အခနးငြာ ေနတာ တစးရကးကႏြစးေထာငးေပရတယး။အေဆာငးပစမေလပ။အမးခနးကဥးေလပ။ေပာငးဖတငဥပတးတေရာငးတာေပါ။အဒါလပးစာတာေပါ။အမးပငးမရြေတာ အခကးအခ ရြတယးေပါ။ သကယးတငးကဒမြာလာထလရလာလေတာငးဆတာနဒမြာပထေပလကးတယး။ (KII with

BHS)

Now I have only one MDRTB patient in injection phase to which injection was given at health center due to her request. She stayed at a hostel, and it was not convenient for her to receive injection at this place. The rest of patients were given at their homes. (KII with BHS)

Few BHS highlighted that giving injection at health center has some advantage for patients to

meet other patients and get social support.

ေဆကေတာကျနးမတကသျာဖလတလကသျာေပလကးတယး။တခ ကေတာအမးအ၀ငးအထျကးခကးတလေတျကေတာေဆခနးမြာပစရပးလပးျပေဆခနးေဆာကးလကးတယး။ကျ နးမတဆရာမေတျကယးဟာကယးစျပေဆခနးေဆာကးလကးတယး။

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မနကးဆလနာေတျလာထတယး။မနကး၆နာရဆသတထျကးလာတယး။၆နာရန၇နာရချၾကာမြာအကနးျပသျာျပ။ဆရာမေတျလညးအဒမြာပအကနးစျပလာႏငးတလ၊လာခငးတလကပဒကေခၚတယး။မလာခငးတလကအမးလကးတယး။ကျ နးမဆရငးေတာအကနးလလလလာတယး။အကနးလာတယး၊သတကဒကပလာခငးတယး။ထျပလdose ပညးတာေတာငး ဘာဖစးလလဆေတာ သတက ဒမြာကေတာဆရာမေတျကလညးအာေပတစကာေတျနတ၊ေနာကးတစးေယာကးကတစးေယာကးေဆျ ေႏျတစကာေတျနကေတာအခငးခငးကတစးေယာကးနတစးေယာကးအာေပၾကတာေပါ။အေရြကလနာကသဘယးလခစာခရတယး။ေရမာမာေသာကး၊အစာမာမာစာ၊အာမငယးနကျနးေတားတလညးဒလကေနတကးလာတာဆေတာတစးေယာကးနတစးေယာကးသတရ ခစာတေ၀ဒနာေလေတျကဖလြယးရငးဖလြယးရငးနရငးႏြမြလညးရတယး။ဘာပေပာေပာအာလညးရြၾကတာေပါ။တစးေယာကးနတစးေယာကးအာေပၾကတာေပါ။မနကးမနကးဆသတလာထတယး။ကျ နးမတ၆နာရစထရငး၇နာရေလာကးဆအကနးလျပျပ၊ (KII with BHS)

Injection was given at MDR TB patients who are in needs. For some patients who are

difficult to receive injection at their residence, MDRTB patients are gathered at one area at

health centers. In the morning MDRTB patients come and receive injections. Around 6 am,

patients come, and between 6 and 7 am, everything was finished. BHS are gathered at this

place. MDRTB patients who are difficult to come to this place, we (BHS) go to their homes.

All of my MDRTB patients come as they prefer this place even after they finished injection

phase. Because, here in this place, patients can discuss among themselves about their

diseases. Moreover, BHS can encourage them. (KII with BHS)

Evening DOT

Very few patients revealed that volunteers did not provide evening DOT for every day. There

were few days in a week that they had to take their drugs by themselves.

၇။တစးခါတစးေလကေတာေလသတေလေတျအကနးမလာတာကေတားေတားဆတယး။

၅။ေနာကးဆသတမလာႏငးရငးဖန းဆကးျပေတာေပာတယး။

၇။ေဆေသာကးရမယးအခနးေရာကးရငးသတလာမလာေစာငးတယးမလာရငးလညးကယးဟာကေသာကးလကးတယး။လာေတာလညးလာေပါေနားစကာေလေတျဘာေလေတျေပာေပာျပေတာပနးေပါ။

၉။ကယးေတျကေတာမေပာပါဘညေနပငးလညးကလညးကယးဟာကယးလညးေသာကးတာလညးရြတယး။

၇။ေဆပတးရငးေတာေဆပတးေနျပငါကလပးေပဥဘာညာဆေတာသတကလပးေပတယး။ေဆပတးေနျပကမဘယးမြာသျာထတးရမြာလညးကမကနညးနညးပါပါဆကးသျယးေပပါဥေပာရတယး။အခေနာကးပငးဆရငးေတာေဆေပတဆရာနရငးႏြေတာလညးကယးဟာကသျာျပေတာထတးလကးတယး။


7: Sometimes, volunteers don’t come to our homes.

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5: At last, they made a call to us that they could not come to us. 7: We waited for volunteers, but when they failed, we took by ourselves. When they come, we can talk each other. 9: Sometimes, if they don’t come to us, we take the drugs by ourselves. 7: We can ask volunteers where to take drugs when the medications become out, these days, as we know how to do it, and we do it by ourselves. (FGD with MDR TB patients)

Opinion and suggestion

All patients viewed positive towards CB MDR TB Care in general. They appreciated

activities of volunteers and support package.

Majority of key informants stated that CB MDRTB Care was supportive for patients and

BHS. Most effective activity of CB MDR TB care is evening DOT. Majority highlighted

health education and counseling by volunteers was important. All convinced that

monetary support for patients is necessary. Few pointed out that incentive was provided

only for MWs and not for TB focal persons at township health department although

he/she was also taking care of MDR TB cases.

Patients’ preference on existing support package

Rank Type of supports Reasons for preference by patients

1 Monetary support -Supportive not only for the patient but also for

the family

-Reduce burden of family

2 Evening DOT -Not missing the pills

-Volunteers remind to take the pills at the exact

time

3 Adherence counseling -Becoming strong enough to bear the

sufferings from the disease or side effects

4 Side effect monitoring -Know what to do if patient suffers from some

side effects

5 Infection control -Know how to prevent family by getting

TB/MDR TB

6 Nutrition -Quality of rice and Nutrition support was poor

and cannot eat

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Monetary support

Almost all patients gave priority for monetary support during ranking exercise. The most

common reason was this monetary support helped while they loose or reduced earning

due to their illness.

(၁၂)- ေငျေၾကကေတာ အေထာကးအကဖစးတာပ။ အလပးမြမလပးႏငးတာ၊ အေထာကးအကဖစးတာေပါ။

(၅)- ကယးစာခငးတာစာလရတာေပါ။

(၄)- အရငးတနးကဆရငး လစာ၂သနးနပါေလာကး ရတယးေလ။ အခညမေလက အလပးမလပးတာ၁၀လပညးေတာမယး။

(၅)- ေဆစာေတာအလပးမလပးႏငးေတာေငျေၾကကအဓကအေထာကးအပဖစးသျာတယး။

12: Money is supportive as we cannot work. 5: Money is helpful as we can buy what we want to eat. 4: In the past, we earn almost 2 lacks a month. Now, I cannot work for 10 months. 5: Because of the disease, I cannot work, so monetary support was the main supportive.

ကေနားဆအခဘယးလလပးလကးလဆေတာသမေလက (၂)တနးကရႈငး တကးေနတယးေလ။ အေတာATMကဒးကအမသမလကးထပထညးထာလကးတယး။သမေလကဒလစဥးကရြငးလခေ

ပါ၊ကရြငးလခကကေနားေခါငးထကထတးထာလရတယး။ေခါငးထမြာအပတစးခေပါသျာတယး။ဒ

ဖယးရခကသာကေနားလစဥး၁၅၀၀၀....၁၅၀၀၀ကဒရြာတထကဖေပတာေပါ။

Now, what I have done was, my daughter was in third grade. The supported ATM was given to my wife to support the tuition fees for my daughter. I don’t need to worry about her tuition fees. Only for my transportation charges 15000, I have to find it.

Evening DOT

ကယးဟာကေဆေသာကးရငးေတာနာရဝကးၾကာရငးလညးၾကာမယးတစးနာရၾကာရငးလညးၾကာမ

ယး။ပမြနးေတာမဖစးဘေပါ။ဟ.. အမးကစၥရြလသျာလကးရငးလညး အဒမြာ အခနးကနး သျာရငး လညးကနးသျာတယး။တကယးလသ ငါနာရကျကးတလာေတာမယး ဆရငး ေအားသလာေတာမယး ကယးကေပတယး။ေလစာမႈရြတာေပါေနားကယးက။အေမေရ..ေဆတကးတဆရာမကေရာကးေန

တယးအမးမြာဆရငးဖတးဖတးဖတးနကယးကေရာကးလာတယး။

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As we took the drugs by ourselves, it cannot be regular as we go to and from in the communities. As volunteers come to our home at exact time very evening, we are aware the exact time to take the drugs every evening. When one of the family members remind that the volunteers are here for you, I go back home immediately from where I am.

Health education and adherence counseling

ေဖဆသ (၅)ကနးမာေရပညာေပတာကကယးနာမလညးတာကေပာပေတာေကာငးတာေပါ။

ေဖဆသ(၄)- သတေပာပေတာနာလညးသျာတာေပါ။

ေဖဆသ(၃)- ဘယးလေနရမယးဆတာသသျာတာေပါ။

ေဖဆသ(၆)- ေနထငးေရ၊အစာအေသာကးေတျကအစသသျာတယး။ 5: Health education is good as they explain to us that we don’t understand before. 4: Yes. We are clear when they give health education. 3: We know how we have to behave. 6: We know very well what to eat, how to behave.

Monitoring side effects

ကယးမသတာေတျရြရငးလညးသတကေမရငးေပာပတယး။သမသရငးလညးသအထကးကသေတျ

ကပနးေမေပျပေတာတစးခအေၾကာငးအရာေတျကေပာပတယး။ကယးကမခစာဖေတာဒလဒ

လဖစးတယးေဟဘယးလဘယးလဖစးတာလဆလရြရငးသသရငးလညးသေပာပတယး။သမသရငး

လညးအမရယးကမေမေပဥမယးဘာေလေတျလပးရငးဘာညာသေမေပတယး။အလေလေတျ

သလပးေပပါတယး။


“They explain to us when we asked what we are not sure about. If they (volunteers) don’t

know about we asked, they asked to their superior persons. We share that what we are

suffering and they explained to us why it happens. (FGD with MDR TB patients)

Home based infection control

ႏြာေခါငးစညးကလညးအခာလေတျကမကစကးရေအာငးလဒါကတပးေပါေနား။ကာကျယးဖ၊ကးယး

ရ ညအစးကေမာငးႏြမေတျ၊ေဘပတး၀နးကငးေတျကလဒေရာဂါမကစကးႏငးေအာငးလ

…..ဒါကလညးဆရာမေတျကေပာပေပေတာေကာငးပါတယး။


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It is good that volunteers ask us to wear the facial masks to prevent transmission to other

people especially to our family members and the neighboring. (FGD with MDR TB patients)

Nutritional support

Almost all patients did not like the quality of nutritional support they received. Most

complained about rice and they said that they sold it out and bought better rice. About

half of patients did not eat cereal powder.

“ဒအတငးေတာငး ေဆကရတာအစာအေသာကး အရမးပကးတယး၊ အာေခါငးေတျနာ၊

အစာေတျ မေၾက၊ အလခနးမြာဒါနပပျပအဆငးေပေအာငး စာရတာေလ၊

ဆရာမကေပာပါတယး၊ ဒဆနးကဒလ ေ၀ဒနာရြငးေတျ အတျကး

ထတးထာတာစာသငးတယးေပါ၊ အာဟာရရခါစကေတာ စာမယးေပါ၊ တစးရကး ကေန ႏြစး

ရကး သရကးေပါ၊ တကယးတမးေတာ လပးရတာအဆငးမေပေတာတာန မစာဖစးေတာတာ” (FGD with MDRTB patient)

“Because of the disease, I have always loss of appetite, sore mouth, inability to digest. I

have to eat this provided rice no matter what has happened to me. Sayama (volunteers)

told me that this nutritional support (rice and other) are particularly made for MDR TB

patients, and we should eat it. I tried at first, but after few days, because of difficult in

preparation, I failed to continue eating it. (FGD with MDR TB patient)

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Suggestions

Most common suggestions from participants on CB MDR TB care were as

follows:

• Capacity building for volunteers

• Continue providing Incentives (for volunteers and patients)

• Selection criteria for volunteers

• Comprehensive approach

• Strengthening Coordination among LNGOs, BHS and volunteers

Capacity building ေတျကပလပးေပသငးတယး။အခကေတာ refresher training

တႏြစးတခါလပးတယး။၃လတခါေလာကးquarterly meeting လပးရငး refresher

လပးရငးပေကာငးမယး။တႏြစးတခါမြေပေတာတခကေမတယး။ (KII)

“Capacity building for volunteers are needed more. Now, refresher trainings are done once a year. It will be better if the refresher training is done every quarterly meeting. As it was given once a year, some people forget. (KII)

(၇) ကျနးမတ Volunteer ေတျအတျကးကေတာ Training မာမာေပဖ

Q: Training ပလတယးဘယးလမ Training ေတျအဓကလခငးလ?

(၂) အဓကကေတာ Counseling Training သတကႏြစးသမးေဆျေႏျ ဖ (၂) ဟတးႏြစးသမးေဆျ ေႏျဖအမာစကဒေဆဒဏးကေၾကာငးစတးကတာေပါစတးကတ Side Effect

ရြေတာအဒအတျကးေၾကာငးလတယး။

(၄) Refresher training လမာမာလပးေပါ။ (FGD with volunteers)

7: We, volunteers, want trainings. Q: What kind of trainings do you want? 2: Especially counseling training to make counseling for MDRTB patients who are depressed due to side effects 4: More refresher trainings are needed (FGD with volunteers)

ေနာကးတခကေတာ incentive၊အဒါမပါဘနေတာ ကယးအပးထက စကးျပဒအလပးက ေရရြညး လပးႏငးမြာမဟတးဘေလ။ခဏတဖတး၁ရကး၂ရကးလပးရတကာကျယးေဆထလမကincentive

53

မေပလရခငးရတယး။ဒါေပမေနစဥးၾကေဆသျာတကးေပဖကေတာincentive မေပဘ မလပးႏငးဘ။ (KII with BHS from Township 2)

The incentive. Without incentive, volunteers cannot stand long term. For activity which last one or two days, incentive is not needed. For eg.Immunization. But to provide DOT every

day, incentive is essential. (KII with BHS from Township 2)

MDR TB လနာက supports ေတာလတယး။ monetary incentive

ေပတာလသတအတျကးေတားေတားအေထာကးအကဖစးပါတယး။ေရာဂါေၾကာငးအလပးမလပးႏငးဘ

၀ငးေငျမရြတအခါ၊ဒါေလကလအာထာစရာေပါ။ (FGD with volunteers from Township 3)

MDR TB patients need supports. Monetary incentives are supportive for them. As they cannot work because of disease, they rely on monetary support. (FGD with volunteers from Township 3)

Selection process ကလအေရၾကတယး။ေရျကတညးကေသခာေရျထာရငးsustain

ဖစးပါတယး။၁၅ေယာကးလရငးပေခၚရတယး။တကယးစတး၀ငးစာတသ၊လပးႏငးမသကေရျ ရတာ။

လပးရမလပးငနးေတျေသခာရြငးပျပရငးတ၀ကးေလာကးေလာသျာတာမလရြတယး။ (KII with

Local NGO 1)

The selection process for volunteers was very much important. If they are chosen very carefully at the start, volunteers can sustain. If we need 15 people, we need to recruit more than that. We have to choose those who actually interested in. When we explain about the nature of MDRTB care activities, half of the recruited volunteers become lost. (KII with local NGO 1)

တကယးတမးကေတာ BHS ေတျကအလကာကညေနတ Volunteer ေတျလရြတယး၊ ကမတေပာတာ BHS ေတျနအဆငးေပတယးဆတာ အဒလလမကေပာတာေလ။ ကမတEpiသျာရငးသတကကေလေခၚေပတယး၊ဒါမြမဟတးရငးကမတတဘလနာရြာေပပါဆရငး

သတကရြာေပတယး၊လဥေရစာရငးလရငးလညးသဘ၊ဒါေပမကမတကအခေၾကေငျမေပႏငးဘ

။သကအျမတမးကညေနတသဆေတာအေထာကးအပရမဟာမဆရငးသတကဥစာေပေစခငး

တယး၊အဒလမဆပပအဆငးေပတယး၊ဘယးျမ နယးဘဖစးဖစးေပါ၊ျမ နယးတငးမြာေတာဒလမ

လေတျရြတယး။ (KII)

Actually there are volunteers who help BHS without any incentive. They gather children for immunization activity, tracing lost to follow up TB patients, census data collection. We cannot give any incentive for them. As they always assist us, we would like to make priority for them for the activity which they can get incentives. It will be much better. (KII)

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ဒCBMDR TB ကခသငးတယး။ခရငးလ sporadic ဆမထေရာကးဘ။ Comprehensive approach

ဘသျာသငးတယး။ဆလတာက TA ၃၀၀၀၀support ေပရနမရဘ၊ကနးတ activities ေတျevening

DOT, health education, adherence counseling, side effect monitoring, volunteer supervision

အဒါေတျအာလပါမြေအာငးမငးမယး။ (KII with Local NGO 1)

This CBMDRTB can be extended to other townships. But it will not be effective if sporadic. It should be in the comprehensive approach. What I mean is supporting Travel allowance 30 USD is not enough. Other activities such as evening DOT, health education, adherence counseling, side effect monitoring, volunteer supervision should be included. (KII with local NGO 1)

Strengthen coordination with focal person, BHS and volunteers

and Clarify roles and responsibilities

volunteerေတျဆကဆရာမေတျကreport လပးတာမရြဘဆရာ၊

monthlyလမရြဘ၊လနာေတျနပတးသကးတာဘာမြ reporting လပးတာမရြဘ။လနာမြာ side

effect ေတျရြရငးေတာေပာပါတယး၊အဒကတဘဆရာ၀နးကေပာတယး၊ဆရာမတDOT provider

ကေတာမေပာဘ၊Volunteer နကဒမြာေတာ ေဆလာယတအခနးတငး ေတျရတယး။ ေဆကအပတးတငးေသာၾကာေနတငးေဆလာယရတယး။အဒအခနးမြာေတျဖစးတယး။ပနးျပ

report လပးတာမေတာမရြဘ။ (KII with BHS from Township 1)

There is no direct report from volunteers to us (BHS), not even monthly. They don’t inform MDRTB patient data, but when MDRTB patient suffered side effect, they informed us. We again inform to medical doctors. We (BHS) meet with volunteers every Friday when we collect drugs for MDRTB. But there is no report from volunteers. (KII with BHS from Township 1)

ကမတကSupervision, monitoring လပးရတာမရြဘ။သတစာအပးမြာေဆထတးတအခါ Sign

ထေပရတာေတာရြတယး။ (KII with BHS from Township 1)

We (BHS) don’t do any supervision or monitoring to volunteers. When they collect MDRTB drugs, we have to sign at their book. (KII with BHS from Township 1)

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ပညာေပလပးငနးေတျအမာၾကလပးသငးတယး TV တလမဒယာကေန TB

အေၾကာငးကအခလရကးေပမယးအျမမလႊငးႏငးေတာမထေရာကးဖ၊ HE ေတျကမာမာ campaign

သေဘာမေကာငးေတျကေဟာေပာပျေတျလပးတာမအလမလပးသငးတယးေပါေနား။ကေနားတ

ကေကာငးေတျကလပးေပေတာကေလေတျရ behavior change ေပါေနား၊ မမေခာငးဆ၊ ႏြာေခတငး လကးကငးပ၀ါအပးရမယး၊အဒါကကယးတငးတာ၀နးယရမယး။အလပညာေပလကးတအ

ခါကေတာေတားေတားေတာေအာငးမငးတယးေပာတယး။သျာရငးဘာမြမပါရငးေတာငးမြအလမေလ

(ပါစပး၊ႏြာေခါငးလကးကအပးျပ) အဒါက TV တလမဒယာတ၊ channel တကေန လႊငးေပရငးေတာ ေတားေတားမာမာကာစရငးဒါမေတျသလာရငးသတကယးတငးလမလပးရငးရြကးတတးလာမြာေပါ

ေနား။ ဒတငးကေတာဖစးလာမြ လနာေတျကလပးေပတာေပါေနား ကာကျယးဖအတျကးလပးရငး ပျပေတာထေရာကးမယးလထငးတယး။ (KII with volunteer supervisor from Township 1)

We need more health education sessions. Through TV channels, it was not effective because

it cannot be released always. Health education campaign, health talks at school needs to be

done for the behavior change of school children for eg. to cover their mouth with towel etc.

So that, school children can understand its their responsibilities. It can be said that this

approach is effective. People can be aware of the importance of covering mouth while

coughing through the health education from TV channels. (KII with volunteer supervisor

from Township 1)

56

57

Discussion

58

Discussion and Conclusion

Brief summary of findings

This is the operational research done in Myanmar to assess the community based MDR-TB

care package. Providing Evening DOT by community volunteers assisting to basic health

staffs result in the high and successful treatment outcomes of MDR-TB patients. Very low

rate of attrition among recruited volunteers across different organization was found. Out of

different health care activities provided by community volunteers to the MDR-TB patients, it

was reported that health education to MDR-TB patients and their contacts as well as in their

communities was the most effective one. The significant role of volunteers in community

based MDR-TB care was they were supportive to reduce the tasks and workloads of basic

health staffs. Monetary support was reported by most of the patients as the most essential and

supportive one by CB MDRTB care program. However, this study revealed some challenges

in implementing community based MDR-TB care. They included 1) weak coordination

between LNGO and BHS for supervision of volunteers, 2) refusal of patients to take proper

treatment which may indicate more counseling was needed, 3) low incentive provided for

community volunteers, 4) few BHS could not provide injection at MDR-TB patient’s home

and very few community volunteers were absent to provide evening DOT, 5) conflicting role

between BHS and volunteer supervisors.

Strength and limitation of study

Strengths of this study are it includes two years program’s data of three LNGOs providing

CB MDR TB care in Yangon Region, and it truly represents the perspectives of MDR-TB

patients who received the care, as well as the perspectives of community volunteers,

community supervisors, and public health staffs (TMO, TBC, BHS) that provided the care.

However, the comparison between the program’s outcomes of townships with CB MDR TB

care and that without CB MDR TB care was unfeasible to conduct.

59

Possible reasons for findings

Globally, the treatment success rates among MDR/RR-TB patients are poor at ~50%, largely

due to high rates of mortality and loss to follow-up. Myanmar has the high treatment success

among MDR TB patients which was obviously much higher than the global rate. This study

also found the treatment outcomes of MDR-TB patients under community based MDR TB

care was high (>80%). Supportive measures by NTP and partners organization through

international donors might be the reasons for having high treatment success rate.

In Myanmar’s health care sector, community participations are encouraged to deliver the

comprehensive health care to the communities. Provision of community based health care

deliveries through community volunteers have been practicing for communicable disease

control (TB/HIV/Malaria), and maternal and child health. Because of the nature of

volunteering, the sustainability of them is a big concern in that kind of delivering care

including community-based TB care (11,12).

However, in this study, very low rate of attrition among recruited volunteers was found. The

findings for the possible reasons of low rate of attrition are also revealed and reported that it

was related to the selection process. Majority of community volunteers recruited for CB

MDR TB care in Yangon region were previously retired health staffs, community health

workers, auxiliary midwives, and members of organizations (MRCS, MMCWA, MWAF).

They had been actively involved in health related activities in the communities as well as

social activities at their townships before by assisting the basic health staffs. Therefore,

recruiting this kind of people as community volunteers has lesser chance of drop-outs.

Another reason might be because of their existing jobs. The main reason for attrition is

reported as getting paid jobs. In this study, there was very low percentage of volunteers with

no paid jobs, and the drop outs among them make the overall attrition very low.

Few participants responded that a low incentive for community volunteers was reported as it

can be one of the barriers for their sustainability. However, several considerations has to be

made to increase incentives because of limited funding support.

This study found that community volunteers are supportive to basic health staffs not only in

providing MDR-TB care, but also at other health related activities such as provision of

60

immunization in the communities, disease control activities etc. This might also be due to

most of the recruited people were already working closely with basic health staffs before.

Health Education to the MDR-TB patients as well to their close contacts was reported as the

most effective services by community volunteers. Myanmar people in nature are reluctant to

communicate with basic health staffs to discuss on their health. With community volunteers,

patients can have more frankly, transparent and effective communication to ask about their

diseases. One of the activities of community volunteers is referring close contacts of MDR

TB patients for screening of TB. In this study, it was found that considerable numbers of

close contacts were referred for further investigations for diagnosis of TB and MDR-TB. Out

of the referred cases, 8% and 2% detected as TB and DR-TB respectively. It reflects the

important role of community volunteers referring the risk contacts of MDR-TB.A global

qualitative study reported that community-based and patient-centered MDR-TB care are

preferable among health care providers and patients themselves because it is safe, conducive

to recovery, facilitating psychosocial support and allowing more free time and earning

potential for patients and caretakers (15).

Among the supportive measures through community based MDR TB care, monetary support

was reported by most of the patients as the most essential support for them. Because of

inability to work during long term MDR TB treatment, the families of MDR TB patients face

financial hardship, and the minimal monetary support help them most of the MDR TB

patients in poverty solving their social problem.

There are 20% of MDRTB patients who refused to receive care from volunteers. It is because

of; 1) occupation of some patient (eg. Doctor) want to take self-medication and,

Company/office staff prefer BHS wearing uniform. 2) other cause is that there was no trained

volunteers closed to MDR-TB patient's residence. 3) some patients totally refuse to take

MDRTB treatment. According to a study done in China, the possible reasons to refuse MDR-

TB treatment included out-migration for work, concerns about work and studies and belief

they were cured after undergoing drug-sensitive TB treatment (16).

61

Conclusion and Recommendations

To conclude, the assessment from this operational research found high treatment success rate

among MDR TB patients who received the community based MDR TB care through local

NGOs. For the challenges, we would like to make several recommendations. First, we would

like to recommend strengthening coordination among local NGOs, volunteers and basic

health staffs especially for close supervision and monitoring of community volunteers by

routine reporting of volunteers’ activities to township health department. Second, we strongly

recommend continuing monetary support for MDR TB patients. Third, we would like to

recommend to clarify role and responsibilities of BHS, volunteers and volunteer’s supervisor

by conducting proper meetings among them. Last, we would like to recommend to expand

CB MDR TB care in comprehensive manner while human resources at public health sector is

still limited.

62

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Assessment of Community-based MDR TB care in Yangon …...Multi-Donor Trust Fund (3MDG Fund) coordinating and collaboration with National TB Program.In 2015, MMA has continued implementing