Community Based TB Care Experience From Temeke -Tanzania

THE UNITED REPUBLIC OF TANZANIA

MINISTRY OF HEALTH AND SOCIAL WELFARE

Community Based TB Care: Experience from Temeke, Tanzania

Empowerment and involvement of former Tuberculosis patients in Tuberculosis control

P. O. Box 9083 Dar es Salaam Tel : 255 22 2124500 Fax : 255 22 2124500 E-mail:[email protected] January, 2010

mailto:[email protected]�

Community Based TB care through former TB patients’ social clubs

Experience from Temeke Page i

Table of Contents List of Abbreviations .................................................................................................................................. ii Acknowledgement ..................................................................................................................................... iii Dr. Saidi. M. Egwaga ....................................................................................... Error! Bookmark not defined. Foreword ..................................................................................................................................................... iv Executive summary ................................................................................................................................... vi 1.0 NATIONAL TUBERCULOSIS AND LEPROSY CONTROL PROGRAMME .................................... 1

1.1 Organizational structure of NTLP ............................................................................................................ 1 1.2 Temeke Region ......................................................................................................................................... 1 1.3 Community Based TB care ...................................................................................................................... 2

2.1 COMMUNITY BASED TB CARE IN TEMEKE ................................................................................. 3 2.2 Background ................................................................................................................................................ 3 2.3 MUKIKUTE ................................................................................................................................................. 3

2.3.1 Objectives of MUKIKUTE ..................................................................................................................... 4 2.3.2 Organizational structure of (MUKIKUTE) .......................................................................................... 4 2.3.3 Membership ........................................................................................................................................... 6 2.3.4 Activities/tasks implemented by MUKIKUTE .................................................................................... 7 2.3.5 Support from Temeke Municipal Council........................................................................................... 8 2.3.7 Sources of funds for MUKIKUTE ........................................................................................................ 8 2.3.8 Monetary management within the organization .............................................................................. 10

2.4 Collaboration between TB clinics and MUKIKUTE ............................................................................. 10 2.5 Benefits obtained ..................................................................................................................................... 11 2.6 General Achievement ............................................................................................................................. 11

3.0 LESSONS LEARNT AND RECOMMENDATIONS ........................................................................ 14 3.1 Lessons learnt .......................................................................................................................................... 14 3.2 Recommendation .................................................................................................................................... 15

References ................................................................................................................................................. 17 Annexes ..................................................................................................................................................... 18

Annex 1: Terms of Reference (TOR) ................................................................................................................. 18 Annex 2: MUKIKUTE membership form ............................................................................................................ 21 Annex 3: Referral form to be used by traditional healers ................................................................................ 22 Annex 4: Phases for TB club establishment ..................................................................................................... 23 Annex 5: Job description for former TB patients in specified areas .............................................................. 25 Annex 6: MUKIKUTE registration certificates ................................................................................................... 27


Experience from Temeke Page ii

List of Abbreviations AIDS Acquired Immune-deficiency syndrome CBTC Community Based Tuberculosis Care CTC Care and Treatment Centre DAS District Administrative Secretary DED District Executive Director DMO District Medical Officer DOT Direct Observed Treatment DOTS Directly Observed Treatment Strategy DTLC District Tuberculosis and Leprosy Coordinator HBC Home Based Care KNCV Dutch Tuberculosis Association LHL Norwegian Heart and Lung Patients’ Association PASADA Pastoral Activities and Services for People Living with HIV/AIDS, Dar es Salaam

Archdiocese MDR-TB Multi-Drug Resistance of Tuberculosis MoHSW Ministry of Health and Social Welfare MUKIKUTE Mapambano dhidi ya Kifua Kikuu na Ukimwi – Temeke (fight against

Tuberculosis and HIV/AIDS in Temeke) NTLP National Tuberculosis and Leprosy Programme PLHIV People Living with HIV PMTCT Prevention of Mother to Child transmission RAS Regional Administrative Secretary RMO Regional Medical Officer RTLC Regional Tuberculosis and Leprosy Coordinator TOR Terms of Reference TB Tuberculosis VCT Voluntary Counseling and Testing


Experience from Temeke Page iii

Acknowledgement This document, “Community Based TB Care, Temeke experience” is one of the outputs of the National Tuberculosis and Leprosy Programme (NTLP) implemented in Temeke, Dar es Salaam by Temeke Municipal Council through TB control programme in partnership with the Norwegian Heart and Lung Patients Association (LHL). NTLP would like to thank all those who contributed in one way or another to the success of the programme. Special thanks go to Dr. Eliud Wandwalo who gave Community based TB care a priority in his PhD thesis and the LHL who funded the research and later keeps on financially support former TB patients in Temeke. The NTLP would also like to extend more thanks to the DMO, DTLCs, health workers in TB centres in Temeke and MUKIKUTE administration for their cooperation during the documentation. Likewise, the contribution of all MUKIKUTE members in the whole process of supporting TB patients and community sensitization cannot go unmentioned. Last but not least, more thanks are extended to the Temeke RTLC, Wailes TB/HIV officer and the DTLC for their valuable contributions towards documentation of best practice of community Based TB care in Temeke Municipality.


Experience from Temeke Page iv

Foreword Tuberculosis (TB) is among the top ten causes of global mortality and morbidity accounting for about 26% of all preventable deaths. TB is the third leading killer of adults behind Malaria and Acquired Immune-deficiency syndrome (AMMP, 2003). In Tanzania more than 63,000 new TB patients are notified annually and this is mainly fuelled by HIV epidemic. Other factors like population growth and urban overcrowding have also contributed to this increase. Case detection has remained below 50% compared to WHO estimates of 70% (Global report, 2009). This under reporting could be due to low community sensitization, stigma, and passive case finding approach. In Tanzania, TB patients are treated under health facility or community based Directly Observed Treatment (DOT). Community based DOT includes choosing a local ‘treatment supporter’ to supervise the patient when taking medications and encourage them to comply in the whole course of treatment. This approach goes beyond the existing health services and enhances more allies including cured TB patients. Community-based approach also empowers and involves former TB patients in their capacity to help other TB patients to overcome difficulties during treatment. Successful TB treatment requires at least 6-8 months of treatment to ensure cure and prevent the development of multi-drug resistant TB (MDR-TB). Thus compliance throughout the course of treatment is of paramount importance. Various studies on involvement of local TB treatment supporters conducted in different areas worldwide including Temeke, Tanzania. In Temeke the study involved former TB patients. The effectiveness of this approach revealed in 2004 in a randomized controlled trial conducted in Temeke region of NTLP where by the effectiveness of community-based DOT using guardians and former TB patients was done to compare hospital-based DOT in an urban setting in Tanzania. The findings from both DOT options gave similar treatment outcomes at a reduced cost. It was therefore concluded that community-based DOT was as effective as health facility-based DOT and can achieve good treatment outcomes (Wandwalo et al, 2004).

Another study conducted in the same region in 2005 to determine the cost effectiveness of health facility and community based TB DOTS in an urban setting in Tanzania revealed that, the total cost of treating a patient with conventional health facility based DOT and community based DOT were $ 145 and $ 94 respectively. Cost fell by 27% for health services and 72% for patients. Indirect costs were as important as direct costs, contributing to about 49% of the total patient's cost. The main reason for reduced cost was less number of visits to TB clinics. Community based DOT was more cost-effective at $ 128 per patient successfully treated compared to $ 203 for a patient successfully treated with health facility based DOT (Wandwalo et al, 2005). These results persuaded NTLP in collaboration with the Norwegian heart and Lung Patients Association (LHL) to establish former TB social club known as “Mapambano dhidi ya Kifua kikuu na UKIMWI, Temeke” MUKIKUTE in 2005 for the purpose of strengthening community based


Experience from Temeke Page v

DOT in Temeke municipal council. The club is implementing a lot of activities and it has shown remarkable achievements concerning community based TB care. In view of these achievements, the Ministry of Health and Social Welfare (MoHSW) through NTLP decided to document Temeke experience, best practices and lessons learnt on community based TB care and share with different stakeholders. This document will also be used as the base for development of Terms of Reference (TOR) and training package for establishment and management of former TB patients’ clubs in other districts across the country.


Experience from Temeke Page vi

Executive summary Empowering and involving former TB patients in improving community TB care revealed to be an effective method of increasing TB case detection rates as well as improving TB treatment outcome. It is clearly connected to other priorities in TB control. In regards of involving former TB patients in community based TB care, Temeke was the first district to establish and maintain a successful former TB patients’ group, as the initiative of implementing community based TB care (CBTC) in the district. This document presents the best practices of community based TB care in Temeke. Multiple strategies were used to obtain relevant information for this document. The strategies included interviewing the regional TB and Leprosy Coordinator of Temeke, health workers in TB clinics and administration of MUKIKUTE (former TB patients’ organization). Available published, grey literature and reports on the empowerment and involvement of patients and former patients in TB control were also reviewed. The interview covers the general information of the organization, activities implemented by the organization, roles and responsibilities of members, source of funds as well as on how health workers including Regional and District TB coordinators work with and support the group. Cured TB patients from MUKIKUTE have been working in collaboration with health workers in Temeke NTLP region. They have been involved in social mobilization, providing treatment support to patients under home based DOT, shared their experience with TB patients under treatment brought suspected cases to the TB centre and assist TB patients to correctly follow their treatment. Norwegian Heart and Lung patients Association has been providing financial support, while Temeke Municipal Council provides financial and technical support. The major lessons learned include community involvement through former TB patients’ groups created and strengthened the sense of an individual, family and community responsibility in TB control. This also empowered the ex-patients to take on an active role in the fight against TB; enhancing community awareness through the use of former TB patients as informants and treatment supporters has contributed towards reducing default rates and improving cure rates. It has also contributed towards reducing stigma and discrimination of TB patients in the family and community. Former TB patients’ groups hardly ever empower themselves but need the involvement of stakeholders other than the TB programme.

The document recommends the establishment of former TB patients’ club for community TB care with major activities of conducting sensitization gatherings and trainings; defaulter and TB contact tracing; and supervising patients under home based DOT. Only committed former TB patients are recommended for enrolment. A joint plan for CBTC activities between the Councils and TB clubs is also recommended. Health workers are recommended to provide technical assistance and a maximum cooperation for capacity building among the former TB patients for taking up an active role in the fight against TB. TB control programme at district level advised to allocate funds, and looking for donors to support former TB patients. However, the Councils advised to assist clubs in establishing income generating activities for their sustainability.


Experience from Temeke Page 1

1.0 NATIONAL TUBERCULOSIS AND LEPROSY CONTROL PROGRAMME

1.1 Organizational structure of NTLP The NTLP is based on the central- local government structure of the MoHSW and that of the Prime Minister’s Office Regional Administration and Local Government (PMORALG). The major activities implemented by the NTLP is to mainstream TB control activities at lower levels from the region, district to community, basing on the stop TB strategy including community involvement and patient empowerment.

Fig 1: Organizational structure of the Tuberculosis and Leprosy control programme

1.2 Temeke Region Temeke is the largest Municipality among of the three Municipalities in Dar es Salaam city, covered 656 sq. km, with the population of 927,310. According to the NTLP, these Municipalities are taken as regions. Temeke region is located on southern part of Dar es Salaam city, and it has seven (7) NTLP districts namely Wailes, Mbagala (Kizuiani), Tambukareli, Kigamboni, Yombo Vituka, Keko and Rangi Tatu. Economically, the population in the rural part of Temeke is engaged in small scale farming, petty trading and fishing. A small proportion of urban inhabitants are employed by either government, parastatal or informal sector.

Prime Minister’s Office Regional Administration and Local Government

Ministry of Health and Social Welfare Directorate of preventive services (TLCU)

DMO (DTLC)

RMO (RTLC)

RAS

In-charge Health centre

DAS/DED

In-charge Dispensary

Community



The population in Temeke region is served by 116 government and non-governmental health facilities. A region has two TB/HIV Officers who are stationed at Temeke Hospital and at Rangi Tatu dispensary. Each district has a TB/Leprosy Coordinator. There are fourteen (14) diagnostic centers for AFB microscopy located at different levels of health facilities. Diagnostic centres owned by the government include Temeke, vijibweni hospitals; Kigamboni H/C; Kizuiani, Tambukareli, Yombo Vituka and Rangi tatu dispensaries. Private facilities include TOHS, Consolata sisters and PASADA. Keko prison, police kilwa road dispensary and JKT Mgulani belong to the military, while Bandari H/C is a para-statal health facility. There are thirty seven (37) treatment centres providing TB services and treatment is almost 100% ambulatory. Directed Observed Treatment (DOT) is provided in both facility and home based approach. The smear positive patients get treatment under health facility DOT for the first two weeks before transferred to home based DOT. Tuberculosis and TB/ HIV planned activities implemented by Temeke Municipal in collaboration with PASADA, MUKIKUTE and LHL. LHL provides financial support to MUKIKUTE in implementing community TB care in Temeke Municipal council. In the year 2008 the region notified 3,952 of patients of all types of TB cases of which, 1,464 (37%) were smear- positive (Regional report, 2008).

1.3 Community Based TB care Community involvement and patient empowerment is one of six components in Stop TB strategy. Community involvement in the context of TB care implies establishing a working partnership between the health sector and the community, particularly TB patients, both currently on treatment and the cured. Experience and documentation from different countries reveal that TB patients play central role in helping fellow-patients to cope better with their illness and working closer with NTPs in delivering services responsive to patients’ needs. Community involvement ensures that patients and communities are informed about TB and enhances general awareness about the disease and sharing responsibility for TB care which ultimately result to effective patient empowerment and community participation and hence increasing the demand for health services and bringing care closer to the community.



2.0 COMMUNITY BASED TB CARE IN TEMEKE

2.1 Background Temeke Municipal Council has been involved in community TB control particularly former TB patients since 1st July 2003 to date. The collaboration started during the study conducted by Dr. Elliud Wandwalo in the year 2003 which was done collaboratively with Temeke Municipal Council and PASADA. In the study a total number of twenty (20) former TB patients recruited (two per district) for the study and later were oriented on TB and TB/HIV management including supervising patients under home based DOT. Each of them was given allowance of 2000/- Tshs per week making a total of 8000/- Tshs per month. The study showed a nice treatment outcome among the patints who have been supervised by former TB patients. The study funded by LHL. Following these remarkable achievements, Temeke region facilitated the formation of former TB patients’ organization known as MUKIKUTE in 2005. Responding to the recorded study results, in year 2006 the region increased the number to 40 former TB patients. As the demand increased, in year 2008, the region increased the number up to 60 former TB patients. Fifty (50) former TB and TB/HIV patients out of 60 are currently involved to support 230 (11%) TB patients under home based DOT. According to Temeke regional annual report (CBTC report, 2008) 2,912 patients were registered as new cases and out of this, 2,180 (%) were supervised under home based DOT (Temeke region annual report, 2008). The Council allocates about 7,000,000/- Tsh. per year to support community TB care activities in Temeke.

2.2 MUKIKUTE

MUKIKUTE is a non–governmental organization working in the community of Temeke Dar-es-Salaam to combat further spread of TB and HIV; and mitigate its impact among the community members who are infected. MUKIKUTE was established on 22nd February 2005 with 20 members who participated in the study in 2003 as mentioned earlier. Through the support of Temeke Municipal Council and PASADA in 2007 the organization was legally and officially registered, as a non-governmental organization aimed at increasing community knowledge/awareness on TB and TB/HIV and promoting positive attitude and support towards people living with HIV (PLWHIV) and Tuberculosis. MUKIKUTE stands for “Mapambano ya Kifua Kikuu na Ukimwi – Temeke”, meaning fight against Tuberculosis and HIV/AIDS in Temeke. The organization has a constitution which it operates on and currently, there are 60 registered members.



2.2.1 Objectives of MUKIKUTE The main objectives of MUKIKUTE are: • To create awareness on TB and HIV/AIDS among the community members. • To work against TB and HIV/AIDS stigma in the community. • To supervise patients who take TB drugs under home based DOT. • To assist/encourage TB patients to comply and complete treatment. • To create awareness in the community on the proper care of TB patients and PLWHIV

Support formation of TB clubs in the community.

2.2.2 Organizational structure of (MUKIKUTE)

a) b)

Fig 2: a) Organizational structure; b) Leadership chart of the club (MUKIKUTE) i) Board of Directors

This consists of 2 Doctors including RTLC and any other doctor interested with the club Duties:

- Advisory body - Provide technical Support

ii) General assembly:

This involves all MUKIKUTE members Duties

- Main decision making organ - approving policies, financial plan, budget and report.

- Selection of six (6) members to form the executive committee - Selection of three (3) signatories of the organization - Approve contributions proposed by the executive committee

Secretary General Treasurer

Committee

Former TB and TB/HIV patients

Supporting staff

President/ Directors

General Assembly

Management Team

Executive Committee

Former TB and TB/HIV patients

Supporting staff

Board of Directors



Meetings The organization has three types of meetings namely annual general meeting, special general meeting and extra ordinary meeting. The General meeting is held at least once in every calendar year usually in the first quarter where by all MUKIKUTE members attend the meeting. In the event of urgency, the secretary in consultation with the Chairperson may call an extra ordinary general meeting of the organization. Special general meetings convened when there is a special issue to be discussed. All these meetings need a quorum of 50% of eligible members.

iii) Executive committee

The executive committee consists of: o Management team o Six members selected by the general assembly Duties:

- Run day to day affairs of MUKIKUTE - Prepare annual budget and other budget - Employ and deploy staff - Review of financial reports - Accountable on the organization assets including those hired by the organization - Prepare agenda for the General assembly

The executive committee meetings take place at least four (4) times per year.

iv) Management Team These are office bearers and is comprised of three (3) members who are o Chairperson o Secretary o Treasurer

These are elective positions to run the office for 5 years. Re-election of a member is acceptable. These also are the members of the executive Committee by virtue of their titles. Duties: a) Chairperson

- Spokesperson of the organization - Convene special and emergence meeting as deemed necessary - Preside meetings and casting votes - Topmost official in the organization who deals with all matters pertaining the

organization and rules

b) Secretary - Chief executive - Prepares and keeps records of all activities of the organization - procure goods and services for the organization

c) Treasurer

- Accounting all funds belonging to the organization - One of the four signatories of the organization.



- Issue all cheques - Keeps all financial records. - Prepare annual statement of accounts for the organization

v) Former TB and TB/HIV patients

Duties: - Active case finding - Defaulter tracing - Support treatment to TB patients under home based DOT - Community sensitization as informants

vi) Supporting staff

These include office attendants and driver Duties:

- Provide support in various office activities

2.2.3 Membership

(i) Criteria:

Anybody who has been treated and cured from Tuberculosis with/without living with HIV/AIDS and has: • To be ready to give a testimony on being diseased and cured from TB. • To be ready to give services/support to TB patients • Arleady exposed his/her HIV/AIDS seral status to the community. • To be acceptable by the community • To be ready to learn about various issues concerning TB and HIV/AIDS.

(ii) How to apply

An applicant has to do the following: • Write an application letter

o The letter should describe briefly the reason of why he/she want to join. • Fill a membership form under supervision of the secretary general. • Pay an application fee of 10,000/- Tshs • Pay a membership fee is 1,000/- Tshs per month. • Pay any other contributions agreed by the organization (any contribution has to be

discussed by the executive committee and approved by Annual General meeting)

(iii) Termination of membership

Member is eligible for termination on the following reasons: • Death • Resignation or retirement in writing • If convicted of criminal offence • Proved mentally un-fit • Misuses of organization money, assets and anything belongs to the organization



• Failure of paying membership fees consecutively for more than 6 months without any notice

2.2.4 Activities/tasks implemented by MUKIKUTE Currently MUKIKUTE is implementing the following activities: • Community mobilization/sensitization

o Conduct meetings and community gatherings in which TB, TB/HIV and HIV/AIDS facts provided using former TB patient’s testimony and pamphlets, brochures, leaflets. Gatherings conducted at least once per year per ward. Edu-entertainments are used including drama, performance talks, role plays, testimonial from former TB patients and PLHIV addressing TB control; TB/HIV; HIV/AIDS and stigma.

MUKIKUTE drama group, performing during community sensitization event in one of the wards in Temeke.

The MUKIKUTE Chairperson (Mr Joseph Mapunda), sensitizing the community about TB and TB/HIV in one of the wards in Temeke.

o Sensitize community members/leaders to understand and accept TB patients and

PLWHIV in the community. o Sensitize TB suspects; and refer them to health facility for screening and laboratory

investigations.



o Visit TB patients and their contacts for education on TB signs and symptoms; and encourage the contact to attend at health facilities for screening whenever they show the signs and symptoms.

• Orient and work with traditional healers in identifying and referring patients with TB signs

and symptoms to health facilities. The former TB patients expedite the process of patients accessing health facility and discourage TB treatment by traditional healers.

• Support and supervise TB patients under home based DOT • Defaulter tracing - this has been done in collaboration with District TB and leprosy

Coordinators.

2.2.5 Support from Temeke Municipal Council MUKIKUTE gets support from Temeke Municipal council in the following areas: • Collaboration in trainings for community empowerment including refresher training to

MUKIKUTE members twice a year on TB and TB/HIV • Community sensitization

o Temeke Municipal through RTLC and DTLCs collaborates with MUKIKUTE in community sensitization. Sensitizations conducted in the presence of the Coordinators for responding on technical questions posed by the community.

o The RTLC facilitate the training on TB and TB/HIV to influential people including traditional healers, Councilors, wards executive officers.

• The council has been receiving funds from partners and disburses them to MUKIKUTE till when MUKIKUTE registered as legal operating organization. To date the funds from partners goes direct to MUKIKUTE.

• The Council and MUKIKUTE conduct a joint plan for community based activities to be conducted during a respective financial year.

2.2.6 Collaborating partners

MUKIKUTE works collaboratively with the following national and international organizations: − Norwegian Heart and Lung Patients Association (LHL) − National TB and Leprosy programme of MOHSW Tanzania − KNCV (Dutch TB foundation) − PASADA − Temeke Municipal Council. − ICAP

2.2.7 Sources of funds for MUKIKUTE The organization derives funds and income from fees, contributions from members, sale of publications/properties, gifts, grants, aids from donors.

• Application and monthly fees from members (explained above in 2.2.3 ii)

• Contributions from members



Sometimes members agree to pay some money for development activities. For example, Kigamboni club contributed the initial cost for flower garden development.

• Economic and income generating activities MUKIKUTE has created different projects for income generation. These include: o Drama club which has been used for community sensitization and also it usually lent out

in different occasions o Lend out generators, modern music system and amplifiers o The organization makes “tie and die” clothes (batiks) and sell them for generating

income

MUKIKUTE members looking at the “tie and die” clothes (batiks) developed by the club.

• Donation from other partner organization

LHL has adopted and active supportive role and used a combination of methods and approaches in its cooperation with MUKIKUTE. These include: o Skills enhancement through seminars, workshops, and training, o Involvement of patients, former TB patients and service providers in development of IEC

materials, o Consultative visits by LHL officials to observe the programme activities and meet

stakeholders and patients, o Provision of on-site advice, support and mentoring, o Facilitating opportunities for participation in seminars and conferences locally, regionally

and internationally, o Nurturing and promoting local talent/expertise such as in the production of locally

responsive IEC materials (TB booklets).



2.2.8 Monetary management within the organization Bank account Bank account opened by the name of the organization. There are four signatories of the organization. All revenues of the organization are deposited to the bank. All cheques and orders for payments from the account have been signed by at least two signatories. The organization financial year ends on 31st December, every year.

2.3 Collaboration between TB clinics and MUKIKUTE

• Community mobilization/sensitization During community sensitization, MUKIKUTE works hand in hand with health personnel including DTLCs. Before sensitization is done MUKIKUTE and health care providers work together to prepare massages for drama and talks. During the course of sensitization, health care providers have the role of clarifying and responding to issues rose from community members.

• Orientation/training community leaders During training/orientation workshops of influential people which are organised in collaboration between MUKIKUTE and Temeke Municipal, health personnel facilitates the trainings.

• Selection of treatment supporters Smear positive patients who opt for home based DOT and those who have no relative to support them during treatment, health care providers have to communicate with MUKIKUTE leaders for select the treatment supporter from the organization who is living closely to the patient for easy accessibility.

• Health education This is provided to treatment supporters who come for refill of medications. In Temeke, is provided on Tuesdays and Thursdays (drug refill days). This helps to remind treatment supporters their responsibility and to properly handle patients in different situations. The education is provided by health care providers and one or two selected member(s) from MUKIKUTE.

• Intensified Case Finding (ICF) MUKIKUTE brings TB suspects obtained by either screening TB contacts or identifying them from the general community (active case finding forms available). Health workers facilitate investigations for diagnosis. • Defaulter tracing Health workers provide a list and addresses of defaulters to MUKIKUTE leaders. The former TB patients have been given the responsibility of tracing them basing on their residential locations. The health workers usually accompanied the former TB patient and use that opportunity to educate the whole family and other TB contacts.

• Health talks Health workers support former TB patients to conduct health talks and give their testimony to TB patients at diagnostic and DOT centres. Former TB patients assign themselves at least two



per centre. Prior to the talk, topics are prepared and during the talks Health workers assist former TB patients in responding to questions raised from TB patients. Health care providers in Temeke Municipal are positively recommending MUKIKUTE and other small former TB patient’s clubs in TB control strategy. They also recommends some more motivations to them especially some allowances, means of transport like bicycles for those supporting patients under home based DOT as well as financing their projects for their sustainability. For instance, Kigamboni former TB patients’ club has established vegetable garden as income generating activity for the club, but they need funds for buying bicycles for vegetable distribution.

2.4 Benefits obtained Temeke Tuberculosis Programme: Apart from community sensitization and training, the council work together with MUKIKUTE in defaulter tracing and active case finding. MUKIKUTE members bring TB suspects for sputum examination and defaulters for treatment. The intensified case finding forms are available in TB clinics and MUKIKUTE office. • MUKIKUTE the first ever former TB patients’ organization in Tanzania • Retention of all 19 founder members to date in the organization (one died). • Good relationship with partners -LHL, PASADA, Temeke Municipal Council and ICAP • Good reputation- internationally, nationally and the community at large • The organization is able to generate income through hiring of motorcycle, 2 generators,

modern music system and amplifier • MUKIKUTE members have been getting some allowances as TOTs in which some amount

have been paid to the organization. Individual benefits • Earned respect from health workers and community at large by being TOTs in CBDOT, and

home based HIV management • More knowledge and skills on TB and TB/HIV control • Some of members do attend international conferences outside the country • Members have acquired knowledge and skills in income generating activities including

making of tie and die clothes.

2.5 General Achievement Temeke Municipal • The first district to establish former TB patients’ organization in Tanzania. • Increased case notification rate (average of 3% of cases per year) • Cure rates increased from 78% (2004) to 87.5% (2008) Note: This should be understood that former TB patients’ involvement in community TB care has contributed to the above achievements align with other TB control activities in Temeke municipal council.



MUKIKUTE: Up to the end of the year 2008, the organization has been implementing the following community TB care activities:- • Tracing TB contact of smear positive patients • Prepare and print referral forms to be used by traditional healers • Organize training on TB and TB/HIV to 40 traditional healers and 480 other influential

people in 16 wards out of 24 wards in the district. • Organize refresher trainings to 320 former TB and TB/HIV patients on TB and TB/HIV. • Conducted community sensitization in all 24 wards in Temeke. More than 6500 people

sensitized. • Provided community DOT to more than 200 patients • Conducted active case finding, and they managed to bring 601 TB suspects for diagnosis

where by 43 among those were new smear positive TB cases. • Developed 5000 booklets to impart knowledge about TB among to patients, which have

adopted by the Ministry and other organizations in different countries including Zambia and Namibia.

• Promoted TB agenda locally and internationally • Other 3 TB clubs to including Ilala, Kinondoni Municipalities and Kisarawe district in Pwani

region have been formed under guidance of MUKIKUTE. • Spear heading establishment of National former TB patients’ clubs referred to as “MKUTA”

2.6 Opportunities MUKIKUTE has managed to achieve its objectives by using the available opportunities to include: • Good collaboration with Temeke Municipal Council • National and world commemoration days such as World TB and HIV days • Readiness of media organs to work with MUKIKUTE to include TV/Radio talks • Good cooperation with health care providers in conducting Health talks at health facilities • Willingness and availability of partners/stakeholders to work with MUKIKUTE • Political will at different levels to work with MUKIKUTE • Readiness of the community to work with MUKIKUTE

2.7 Challenges facing Community based care in Temeke Temeke Municipal • Still low community awareness in about TB and this has been contributed by the fact that

some community members do not want to attend the sensitization gatherings. • Stigma to TB and TB/HIV patients is still high in Temeke • Some treatment supporters send patients to collect weekly drug supplies whenever patients

show improvement.(identify reasons/ causes of this problem) • Some treatment supporters just provide the drugs for the whole week to the patients for self-

supervision. (state the reasons for this problem) • Some relatives (treatment supporters) think that they are wasting their time when waiting for

the refill of drugs for their patients • Shortage of health care providers results to limited visits to home based DOT patients



• Some patients under home based DOT, move to other regions, and hence difficulties in supervising them

• Shortage of food among TB and TB/HIV patients MUKIKUTE: • Mistrust among traditional healers and health care providers • Low economic status among members • Poverty among TB and TB/HIV patients to include shortage of food and money • Inadequate motivation among former TB patients • Difficulties in tracing patients due to incorrect addresses • Insufficient funds to cover more patients and communities • Poor recording system – difficult to trace data about the activities conducted.

13.0 Future Plans MUKIKUTE in collaboration with Temeke Municipal council is planning to work on the following strategies to address the fore mentioned challenges: Temeke Municipal Council • Exploring more partners to support former TB clubs in Temeke • Strengthening municipal support to the organization • Trainings of more treatment supporters on home based DOT • Strengthening referral system among the home based DOT patients to health facilities MUKIKUTE • Expand MUKIKUTE activities including counseling and testing for HIV to TB patients • Expediting formation of National former TB patients’ organization known as MKUTA

“Mapambano ya Kifua kikuu na Ukimwi Tanzania” meaning, fight against TB and HIV in Tanzania.

• Assist other districts across the country to form TB clubs • Innovate new income generating activities and strengthen the existing ones for sustainability

of the organization • Advocacy and promote activism for patients’ rights to e- TB patients and community at large • Strengthen referral system of TB patients from traditional healers • Strengthening recording system within the organization



3.0 LESSONS LEARNT AND RECOMMENDATIONS

3.1 Lessons learnt

• Major CBTC activities implemented by MUKIKUTE in Temeke Conducting sensitization gatherings, trainings and health talks; defaulter and TB contact tracing; and supervising patients under home based DOT have played the major role in the scaling up of CBTC in Temeke.

• Ccommunity responsibility in TB control The involvement of former-TB patients as treatment supporters in the program has significantly contributed to empowerment of former-patients to take active role in the fight against TB. Community involvement through former TB patients’ groups is effective in creating and strengthening the sense of individual, family and community responsibility in TB control. Testimony of a person who has experienced signs and symptoms of TB and cured builds a kind of trust among TB suspects to early seek for care from health facilities.

• Community mobilization/sensitization

Enhancing community awareness through the use of former TB patients as informants and treatments supporters has significantly contributed towards reducing default rates and improving cure rates. It has also contributed towards reducing stigma and discrimination of TB patients in the family and community as observed in Temeke

Edu-entertainments have revealed to be very important for creating people gathering. It has been also observed that edu- entertainments are good methods to convey messages concerning TB and TB/HIV to community. They portray the message that people have been cured from TB with or without HIV can live normally and engaging him/herself in any kind of activities.

• Referral system of TB suspect A number of patients seem to be kept by traditional healers. Conducting training and working with traditional healers with the emphasis of referring TB suspects for diagnosis is much considered as a potential point of entry to reach many TB patients and hence increased case detection rate in Temeke Municipal.

• Funding former TB patients’ clubs

Former TB patients’ groups hardly ever empower themselves but need the involvement of stakeholders other than the TB programme. These stakeholders might be nongovernmental organizations, activists for PLHIV and academic institutions. Temeke region has been allocating funds for community based TB care activities. The CBTC activities have been planed and implemented in collaboration between the Council through TB programme and former TB patients’ organization, MUKIKUTE and LHL.

• Nutritional support

Most of the TB patients revealed to have positive altitude in drug taking, but the problem has been shortage of food. The club in collaboration with the Council and other stakeholders can



organize the funds of which some poor patients can be provided with food for better treatment results through referral and linkage systems.

• Collaboration between health workers and former TB patients in TB control

All the activities concerning TB control implemented by MUKIKUTE have been planned before in collaboration with the Council through TB control programme. The health workers including the programme coordinators should be present especially during sensitization meetings and trainings, to ensure the correctness of the messages provided by former TB patients as well as responding to the technical issues rise. In trainings, the coordinators are mostly used as the TOTs in all issues of TB control at district and community levels.

Health workers accompany with former TB patients of the respective area in defaulter tracing. This collaboration provides the testimony that TB is a curable disease as long as the whole course of treatment has taken as instructed. This has also providing the opportunity of educating the whole family and other TB contacts, showing them that they are also responsible in TB control. Health education and talks at the centres have been successfully conducted by former TB patients with the guidance of health workers. The sessions have to be short like 30 minutes to avoid boring the patients. The topics have to be well pre-planned.

The sharing out of former TB patients for home based DOT patients’ support is usually base on the residential areas of the patient and the supporter for easy supervision. One former TB patients is allocated to not more than three patients.

3.2 Recommendation

• All districts are recommended to establishment former TB patients’ clubs to be involved in community based TB care, basing on the MUKIKUTE experience. The major activities for the clubs are recommended to include conducting sensitization gatherings and trainings; defaulter and TB contact tracing; and supervising patients under home based DOT.

• Only committed former TB patients have to be enrolled to the club. This is recommended

basing on the fact that, most of the time especially in initial stages, they will be volunteers and they will be needed to contribute for the club as well. This could be successful only if former TB patients are well informed and trained on TB control activities without promising for any incentives.

• Club registration is recommended for easy management, functioning and for acceptability by the partners and the community at large.

• Former TB patients have to be involved in community TB care activities at community,

district and regional levels. It is better for the CBTC activities to be planned together between the Councils and TB clubs. Health workers are recommended to provide technical



assistance and a maximum cooperation for capacity building among the former TB patients for taking up an active role in the fight against TB.

• TB control programme at district level is recommended to allocate funds through CCHP for former TB patients’ support to strengthen community based TB care in their respective districts Councils should also assist the formed TB clubs in establishing income generating activities for their sustainability. The programme at district and regional level should also assist them in mobilising resources from donors. Edu-entertainments is important to establish as them can be used both for sensitization and hired in different occasions as a strategy for income generation.

• Conducting training and working with influential people like traditional healers is

recommended. There should be a defined mechanism for capturing data of TB suspects referred by traditional healers and their sputum examination results.

Conclusion The involvement of former TB patients as informants and treatment supporters revealed to be effective in TB control. Empowerment of TB patients has enabled them to be ambassadors in public gatherings and has increased their importance and become role models in combating the disease through their testimony. This situation has motivated other TB patients to participate in TB control activities. Involvement of ex- TB patients has impacted the reduction of stigma and hence encouraging early care seeking behavior among TB patients.

In view of this experience from Temeke, all councils across the country are encouraged to adopt this approach for effective scaling up of community TB care.



References Global Tuberculosis Control report (2009) Temeke Annual Community TB Care Report (2008) The constitution of the Non-Governmental Organization of MUKIKUTE (2005) Wandwalo, E., Robberstad, B., Morkve,O. (2005). Cost and cost-effectiveness of community based and health facility based directly observed treatment of tuberculosis in Dar es Salaam, Tanzania. J Pub Med 3 Wandwalo, E., Robberstad, B., Morkve,O. (2004). Effectiveness of community-based directly observed treatment for tuberculosis in an urban setting in Tanzania: a randomised controlled trial.



Annexes

Annex 1: Terms of Reference (TOR)

UNITED REPUBLIC OF TANZANIA MINISTRY OF HEALTH AND SOCIAL WELFARE

NATIONAL TUBERCLOSIS AND LEPROSY PROGRAMME Terms of Reference: Documentation of Community Based TB Care in Temeke district 1.0 Background

1.1 Tuberculosis (TB) is among the top ten causes of global mortality and morbidity

accounting for about 26% of all preventable deaths. In Tanzania, more than 62,000 new TB patients are notified annually and TB is the third leading killer of adults behind Malaria and Acquired Immune-deficiency syndrome (AIDS). The rapid increase of TB in Tanzania is mainly attributed to the HIV epidemic, but factors like population growth and urban overcrowding have also contributed. However the number of cases decreased as it compares with 65,665 cases in 2004 and 62,092 cases in 2007.

1.2 Successful TB treatment requires at least 6-8 months of treatment. Compliance throughout out the whole course is important in order to ensure cure and prevent the development of multi-drug resistant TB. Traditionally, patients were admitted to hospital for the first 2 months of treatment (intensive phase) and then discharged home with tablets for the next 4-6 months (continuation phase). However there are several problems to this approach, which can actually contribute to increased spread of TB. The problems include: • Increasing rates of TB have resulted in many hospitals overflowing with TB

patients. • The resulting overcrowding increases the chance of TB being spread amongst

hospital patients. • On discharge, many people felt that they were cured and stopped their

continuation phase too early, resulting in later recurrence and increasing rates of multi-drug resistant TB.

• If the hospital is full, patients are crowded together and a person with sputum positive TB may pass the infection onto others before his treatment starts.

In order to tackle these problems the WHO has recommended a community-based approach to TB programmes called “DOTS” which includes appointing a local ‘treatment supporter’ to supervise the patient taking their tablets and encourage compliance for the whole course.

1.3 The National Tuberculosis and Leprosy Programme (NTLP) in collaboration with the

Norwegian Heart and Lung Patients Association established Ex TB Social Club known as “Mpango wa Kuzuia Kifua Kikuu na Ukimwi Temeke” (MKIKUTE) in Temeke district to strengthen community based DOTS.



Effectiveness of community-based directly observed treatment for tuberculosis in an urban setting in Tanzania revealed in 2004 through a randomised controlled trial conducted in Temeke district. The Objective of the study was to evaluate the effectiveness of community-based direct observation of treatment (DOT) using guardians and former TB patients compared to hospital-based DOT in an urban setting in Tanzania. Both DOT options gave similar treatment outcomes. It concluded that Community-based DOT is as effective as health facility-based DOT and can achieve good treatment outcomes (Wandwalo et al, 2004). Another study conducted in the same district in 2005 to determine the and cost effectiveness of health facility and community based TB DOTS in an urban setting in Tanzania revealed that, the total cost of treating a patient with conventional health facility based DOT and community based DOT were $ 145 and $ 94 respectively. Cost fell by 27% for health services and 72% for patients. Indirect costs were as important as direct costs, contributing to about 49% of the total patient's cost. The main reason for reduced cost was less number of visits to the TB clinic. Community based DOT was more cost-effective at $ 128 per patient successfully treated compared to $ 203 for a patient successfully treated with health facility based DOT (Wandwalo et al, 2005). It is envisaged that when such initiatives are well documented, they will form the basis for scaling up the approaches to cover the whole country in future. In order to achieve the goal, the NTLP seeks to hire a consultant who will develop the document.

2.0 Objectives of the proposed assignment The objective of the proposed assignment is to document community based-care practices in Temeke district. 3.0 Scope of work

3.1 In documentation process, the team will carry out the following tasks:

a) Visit MUKIKUTE office and Selected TB clinics in Temeke with the particular attention of: • Interviewing the administration of the organization, the health workers

working in TB clinics in Temeke and the community. • Go through the important documents of MKIKUTE such as constitutions,

reports, etc • Identify the best community based care practices

b) Document the best practices on MUKIKUTE and Temeke TB clinic c) Prepare a document and submit it to the Programme Manager of NTLP.

3.2 Format of the Document • Cover page • Table of contents



• Executive summary • Introduction • Structure of the TB Control Programme (staring with head quarter to community) • Description of MUKIKUTE as a social support club/group including:

- Its information - Structure of the club - Roles and responsibilities of members including leaders - Functioning of the organization including engaged activities - Source(s) of funds. - Benefits (individual and as organization), - Collaboration with the Government and other organizations. - Development of IEC materials including:

i. The source of the idea to develop such materials ii. The process of development iii. The acceptability of the materials by the patients and community in

general. • Progress made in improving TB case detection and treatment outcome in relation

to the functioning of the organization (MUKIKUTE). • Lessons learned and recommendations • References • Annexes

3.3 Professional requirements for the assignment

The team will work in close collaboration with the Regional TB and Leprosy Coordinator (RTLC) of Temeke.

3.4 Level of effort

This work is supposed to be finished in 10 working days. It will be done as an office work.

3.5 Reporting

3.5.1 The draft shall be available within two weeks (1 week, field work and

another 1 week, report writing) for review and comments from Programme Manager of NTLP.

3.5.2 The team will make necessary corrections responding the comments which might arose from Programme Manager..

3.5.3 The team will prepare and submit a final document, both in soft and hard copy to the programme Manager of NTLP.

3.5.4 The obtained information will be disseminated in a form of presentation aimed at facilitating the development of TOR for former TB patients’ social support clubs/groups establishment and TOT training manual for the groups.

4.0 Expected Output The documenters are expected to yield a document (with the format outlines in 3.2 above) describing the issues outlined in 3.1 above.



Annex 2: MUKIKUTE membership form

P.O BOX 45232 DAR ES SALAAM TANZANIA EAST AFRICA. TEL: 022 -2856512 MOB: 0756 - 934750, 0784 – 505637 Email: [email protected]

MAOMBI YA UANACHAMA Jina kamili………………………………………………………………………………… Umri………………… Elimu yako……………………………… Nimeolewa/ Sijaolewa (kata isiyohusika) Je, uliwahi kuumwa Kifua kikuu? Ndiyo/Hapana. Kama ndiyo taja mwaka…………………. Je, Unaishi na virus vya Ukimwi? Ndiyo/ Hapana. Kama ndiyo, taja jina la Azaki yako……………………………. Je, utakuwa tayari kutoa ushuhuda mbele ya jamii kwamba wewe unaishi na virusi vya ukimwi ama uliwahi kuumwa TB? Ndiyo/Hapana Nitashirikiana na wenzangu katika shughuli za chama bila kulazimishwa. Nitajielimisha na kutoa elimu mpya nitakapopewa nafasi ya kujiendeleza. Nitatoa mchango wa chama bila kukosa. Nitakuwa mwminifu na mwadilifu katika kutunza mali za chama. Nitaheshimu na kutekeleza majukumu yote nitakapopewa na uongozi. Nitaheshimu maamuzi wa kikao cha juu cha kikatiba bila kulaumu. Nitashiriki tendo lolote la uvunjaji wa amani wa chama. Nitatunza siri za vikao na sitakuwa tayari kuhujumu asasi. Mimi …………………………………………………nakubaliana na yote. Sahihi ya mwombaji…………………………………… Tarehe……………………………. Jina la aliyepokea………………………………………….. Sahihi ……………………………….



Annex 3: Referral form to be used by traditional healers

P.O. Box 45232 Dar es Salaam Tanzania East Africa Tel: 022 -2856512 mob: 0756 - 934750, 0784 – 505637 email: [email protected]

.

27/OCT/2009 MPANGO WA TAIFA WA KUDHIBITI KIFUA KIKUU NA UKOMA. FOMU YA RUFAA KUTOKA KWA MGANGA WA JADI/TIBA MBADALA. Jina la mgonjwa………………………………………………………………………… Umri………….Siku……………Mwezi………….Mwaka……………. Mahali anapoishi mgonjwa, Wilaya………………Mkoa……………………………. Namba ya nyumba………………………………… Jina la Mjumbe/Mwenyekiti wa Serikali za Mtaa……………………….......................... Sababu ya rufaa: Kifua Kikuu/Mengineyo…………………………………………… Anatumwa kwenda kituo cha tiba cha……………………….tarehe……………………. Tarehe mgonjwa alipofika Kwa mganga wa jadi………………………………………… Jina la mganga wa jadi/tiba mbadala……………………………………………………… Anwani…………………………………………………………………………………….. Marejesho Jina la mganga wa jadi……………………………………………………………………. Anwani………………………………Namba ya simu…………………………………… Jina la mgonjwa……………………………….tarehe ya kupokelewa…………………….. Matokeo ya uchaguzi…………………………………………………………………….. Jina la Mratibu………………………………………………………................................. NB: Mgonjwa aonane na Mratibu wa Kifua Kifua Kikuu na Ukoma



Annex 4: Phases for TB club establishment

P.O BOX 45232 DAR ES SALAAM TANZANIA EAST AFRICA.

TE TEL: 022 -2856512 MOB: 0756 - 934750, 0784 – 505637 Email: [email protected]

ESTABLISHMENT OF TB CLUBS In order to establish TB clubs, the following phases should be followed. PHASE ONE − To identify Former TB Patients (FTB) and People Living with HIV/AIDS (PLHIV) who will be

members of a TB Club (Strictly TB Club members must be either FTB or PLHIV). Identification of those volunteers should be conducted in collaboration with the RHMTs (Regional TB and Leprosy Coordinator - RTLC) and the CHMTs (District TB and Leprosy Coordinators - DTLC, District TB/HIV Coordinators - DTHC, DMO and ICAP regional office)

− Identification of FTB and PLHIV will be conducted according to the geographical area to be covered with the education programme

− FTB and PLHIV will be contacted; selection will ensure gender balance, it will prioritize among those in good health and those motivated to ensure long term support

− FTBs and PLHIV readiness to support the education programme will be assessed through individual interview

− Among those available FTB and PLHIV a list of volunteers will be developed with the contact information

− FTBs and PLHIV who are volunteer to participate to the education programme will be briefly oriented by MUKIKUTE association central office from DSM

PHASE TWO − Interim Leadership of the TB club will be established (be sensitive on religion, political stand,

tribalism and gender) − Among the volunteer, the TB club coordinator will be identified and oriented on his/her tasks − Direct link between the volunteers, RHMT/CHMT, HCW focal person at HF level, ICAP

regional team and MUKIKUTE regional project assistant and MUKIKUTE site project coordinator and MUKIKUTE Central office in Dar Es Salaam will be established

PHASE THREE Introduction of TB Clubs and Recognition − Local Authority (RHMT/CHMT, ICAP) will be informed with an official letter from MUKIKUTE

central office DSM upon the establishment of TB club; the term of reference of the volunteers will be attached to the letter

− MUKIKUTE central office DSM will ensure that members of TB clubs are linked to local Community Based Organizations (CBOs), village/religious leaders, school teachers and traditional healers



PHASE FOUR − Members of TB Clubs will be trained on the education programme and IEC material will be

distributed to support them during the education sessions and community and HF level. − The code of ethics of TB Club members will be provide them − MUKIKUTE central office will provide onsite support to the TB clubs during the initial phase

when the education programme will start to be rolled out



Annex 5: Job description for former TB patients in specified areas

P.O BOX 45232 DAR ES SALAAM TANZANIA EAST AFRICA. TEL: 022 -2856512 MOB: 0756 - 934750, 0784 – 505637 Email: [email protected]

Tasks at Care and Treatment Centres (CTC) - Provide health education on TB, HIV and TB/HIV. - Provide proper education on prevention of TB spread through coughing technique. - Provide advice on compliance of ART for HIV/AIDS patients and DOT for TB patients. - Encourage and consol TB/HIV and HIV/AIDS patients. - Advice HIV/AIDS patients on living with hope and being free to expose their health status - Accompanying patients to various sections in health facility whenever necessary. - Advice and bring TB contacts for investigations for TB and HIV infection. - Assist in non technical activities with the guidance of health workers at health facilities. - Address self stigmatization and hygiene among the clients.

Tasks at TB clinics - Provide health education through health talks; providing leaflets, TB booklets, and testimony

on TB, HIV and TB/HIV. - Sputum collection and follow-up the lab results for patients - Support patients during treatment course by providing supervision under community DOT

approach. - Advice and bring TB suspects and contacts for TB and HIV investigations. - Provide education on side-effects of TB drugs and ARVs and how to deal with them. - Encourage TB patients for voluntary Counselling and testing for HIV infection. - Provide proper education on prevention of TB spread through suitable coughing technique

including the importance of enough light and adequate ventilation. Tasks at PMTCT - Provide health education on TB, HIV and TB/HIV. - Assist in non-technical activities at PMTCT e.g. registration, accompanying clients to various

sections within the facility etc. - Encourage and consol clients who are found HIV positive and/or TB smear positive;

providing education on how to live with HIV/AIDS (with testimony). - Provide education on safe infant feeding and compliance of ARVs. - Sensitize male participation on PMTCT activities and on the importance of investigating the

whole family members. - Address self stigmatization and hygiene among the clients. Tasks at community level - Advice the patients to join groups and other services provided in the community. - Defaulter tracing. - Facilitate in establishment and management former TB patients groups.



- Community sensitization on TB and HIV/AIDS services. - Fight against stigma - Educate on proper coughing technique - Community sensitization on VCT and sputum examination fro Tb suspects. - Work with traditional healers in identifying and referring patients with TB signs and symptoms

to health facilities - Income generation activities The selection of the villages/Wards where to conduct education is conducted in agreement with the District AIDS Control Coordinator (DACC), District TB and Leprosy Coordinator (DTLC) and District TB/HIV coordinator. Other tasks - Participate in meetings at health facilities and at regional/district level whenever necessary.



Annex 6: MUKIKUTE registration certificates

Documents

Community Based TB Care Experience From Temeke -Tanzania