MONITORING BY INDEPENDENT SCIENTISTS OF I COMMUNITY.DIRECTED TREATMENT WITH IVERMECTIN IN APOC COUNTRIES L

UGANDA

African Programme for Onchocerciasis Control

14 September - 3 October 1998

a

APOC Monitoring in Uganda - I Executive Summary

The African Programme for Onchocerciasis Control (APOC) was founded in December 1995 to coordinate disease control efforts using ivermectin in l9 endemic countries in sub-Sahara Africa. APOC is a partnership that involves the broader donor community, national, state and local governments in aflected countries, and various NGDOs. Phase I funding for APOC was made available rn 1997 . APOC has adopted as its main strategy Community Directed Treatment with Ivermectin. This approach requires a reorientation of the health system to embrace community empowerment and could form the basis for establishing PHC in remote rural communities that typify onchocerciasis endemic areas.

The need to monitor the implementation of CDTI in Phase I districts and states prompted the visit of a four-person Independent Monitoring team to Uganda in September 1998. The team was slated to visit all four Phase I districts, Hoima, Masindi, Kasese and Kisoro. Local hostilities prevented the visit to Kasese. This report concentrates on the findings from the three remaining districts based on the following terms of reference:

1 Succinctly document how ivermectin treatments were undertaken in a number of sampled communities/villages in DistrictslLocal Government Areas with approved CDTI projects.

2 Assess community involvement in - drug collection, decision making on the period and mode of distribution, the selection of distributors; and the willingness of the community to bear these responsibilities a.s designed in the CDTI process.

Ja Document community perceptions of CDTI processes, especially the issue of ownership, and expectations for onchocerciasis control, and based on these perceptions and expectations, determine the degree of satisfaction of the community with the different programme activities and outcomes.

4 Assess the quality of training received be community selected distributors (CDDs)

5 Examine the record books of the CDDs and assess the quality of record-keeping and their ability to keep accurate records. The same applies to the health services staff on the project.

6 Determine the number of communities ad eligibles treated and compare your findings with the records of the CDDs and the records at the other levels (e.g. district, central).

7 Determine whether the health personnel participated in ivermectin distribution, and assess the degree and quality of supervision by the health staff (and the quality of training and/or orientation of such staffto CDTI).

8 Identifu constraints in the distributions and make recommendations to the NOTF and the Management of APOC on corrective measures necessary before the next treatement

APOC Monitoring in Uganda - 2 9. Discuss the prospects of sustainability based on the findings above lnstruments used to collect data included a key informant interview schedule for village leaders, an in-depth interview of CDDs, village group discussion guides, household surveys and review of available records. Teams studied two categories of villages. Category A received in-depth study, while Category B villages received only brief household questionnaires. Teams were actually in the field from 21" through 29ft September.

The overall report must be interpreted in the context of the fact that mass distribution of ivermectin at the community level has been going on in Uganda for many years, specifically from 1992 and 1993 in the study communities. This means that CDTI was not introduced on virgin territories, but required an adaptation to the modes of distribution that had existed for five or more year. The team believes that future monitoring in new districts will better reveal the strengths and weaknesses of the CDTI approach. Given that limitation, the team offers the following summaries of findings from the three districts studied.

Hoima District

The CDTI procedure and steps in approaching the community had not been followed. Consequently, both the communities and the health personnel could not made a clear distinction between the CBTI and the CDTI procedures. There is some evidence of IEC activities but the emphasis seem to be only on making the villagers accept and swallow the drugs without observance of the laid down CDTI procedures. Community involvement in the decision making process regarding the selection of CDDs, when and how to distribute drugs, etc was minimal. Most decisions on these matters were made by the chairman, health worker or the CDD.

The CDDs were regarded by the community as experts in the area having undergone a training process, the purpose of which was primarily to assist the government execute it's programme. Consequently, they saw it as a responsibility of government and not themselves to carry out the necessary supervision and follow-up activities.

In general the communities have not made any financial and material contributions towards the work of the CDDs, primarily because they have not been made to see the programme as they own or even as a partnership with government. Training of CDDs were not adequately planned, uniformly executed and was not comprehensive enough for the functions required of the CDDs by the CDTI process.

Several errors and mistakes were identified in records of the CDDs resulting in improper accounting of the drugs and measurement of coverage. Wide discrepancies were found in the coverage rates reported in CDD records compared with those derived from our sample thus calling the statistics produced by the CDDs to question. There was evidence of supervision of CDDs by the health personnel although the effectiveness was not the same in all communities.

Drug management was problematic due primarily to improper record keeping by the CDDs. There was also uncertainties among the CDDs and health workers on how to deal with cases of

APOC Monitoring in Uganda - 3 people who were absent during drug distribution and those that failed to turn-up at central toiliction points. There is no clear indication of sustainability unless there is a remarkable change in the perception and attitude of the people towards the programme. Under the present environment the possibility of take over of the programme by the communities is far-fetched.

Masindi District

The Independent Monitoring exercise in Masindi District was undertaken in four Category A and 20 category B villages with a pilot study in one village. Overall, it was found that CDTI had not been established in Masindi District. Fundamentally, the communities persisted in their perception that ivermectin distribution is a govemment or World Bank progralnme, a misconception that prevents them from making required input into the process. This lack of contribution greatly reduces the motivation of the CDDs. The CDDs operate in a cultural environment where voluntarism is said to be an alien concept (a possible outcome of recent political and economic turmoil), and the absence of support from the communities willjeopardise the sustainability of CDTI over time.

With respect to decision making, there is strong indication that the communities are minimally involved in the process. Thru-out at village meetings was reported to usually be low, and this frustrates the sensitisation activities which could have enhanced participation. Most decisions are taken by village elders and/or health officials and presented to the communities for adoption.

There were no follow-up activities to discuss outcomes of distribution, review programme performance, or plan changes for subsequent distributions. Although the communities expressed general satisfaction with the treatment, there were complaints about side effects, which make continuous health education imperative.

CDDs were trained centrally (i.e. at zonal level) in groups of over 30 participants in just one day. Most participants had to travel over great distances to the venue of the training, thereby reducing the time available for the training itself. It is the team's view that the quality of training is compromised, since the CDDs have poor understanding of the CDTI process.

Records of treatment coverage examined at the zonal level (sub-district) were found to be inconsistent with those monitored in the villages (from which these figures were supposedly derived). They were even less consistent with independent estimates of coverage that emerged from the household surveys in Category A villages. In all villages visited, only one treatment register existed, irrespective of the number of CDDs, and this was observed to influence the accuracy with which the records were kept.

I Kisoro District

In Kisoro mass distribution has been under way since 1993, officially reported coverage has wavered over the years betw een 65.8oh (1997) and 81 .6% (1996). The most recent distribution of March-April 1998, and the main focus of this inquiry, achieved a reported population based coverage of 70.2o/o. A very valuable system of community based records had been established in

APOC Monitoring in Uganda - 4 the form of census and treatment registers. Therefore, it was possible to compare three sources of data on which to calculate coverage on seven villages, a national summary prepared by GRBP, a district summary prepared by the Onchocerciasis Coordinator, and extracted information from village census/treatment registers. Population and treatment figures varied, often widely, among the three sources. The differences between national summary and village based populations coverage calculations differed between +l8o and -23oh. It should be noted that treatment figures in the District Coordinators submissions were consistently lower than those in the national summary. The Coordinator reported that CDDs had trouble making summary reports, although he had retained no copies of these to show the team as evidence. The CDDs themselves claimed that they had little problem with keeping the registers. Effort needs to be made to ensure consistency in reporting at all levels.

Kisoro communities were found to have participated in some of the main decisions for initiating CDTI such as selecting their CDDs and choosing their points and dates of distribution, but there was a strong overtone of political influence in these matters from the Local Council I (village level) leadership. Existing CDDs were also often LCl leaders, and had been on the job since the beginning of the programme. Although reports from various sources indicated that they had at some point actually been elected to serve, there was a sense that their allegiance was primarily with the health system or with the LCI leaders. Efforts to reward or show appreciation for the CDDs were usually framed in cash terms (Ush 100/- per household), which was rejected by many community members. Charges of refusal of services based on non-payment of this monetary show of appreciation were commonly leveled in community discussions. It is likely that re-education and re-mobilisation of these communities is needed to resolve disputes concerning CDD accountability (i.e. to the whole community first) and culturally appropriate and acceptable means of showing appreciation.

Logistics in Kisoro presented the major stumbling block to any programme in that District. Many villages could be reached only after long treks on narrow mountain footpaths. Ofthe five endemic parishes, one had no villages that were accessible by road, and in a second, half the villages were inaccessible. Even those on the road extend ed 3-4 km inward. Also, two of the five parishes, the same with poor road systems, had no local health facility. This impedes supervision and accessing of ivermectin supplies. There was no question, for example, of villages paying transportation for CDDs who go to collect ivermectin or attend training, because there appears to be no public transportation system, and walking for many kilometres is the norm. No roads in the District are paved, and landslides commonly block the road, and in fact prevented the last scheduled day of fieldwork in the District. District level financial input into the last distribution period amounted to only ZYo of total programming funds received. None were received from the Ministry.

1 There was evidence of overlap (integration would be too strong a word) between the CDTI programme in Kisoro and efforts by other groups, notably CARE's Community Reproductive Health Project and a Catholic Mission community health programme These projects has trained Community Reproductive Health Workers (CREHWs) and Community Based Health Workers (CBHWs) respectively, whose duties were preventive in nature. The District has yet to develop a comprehensive village-based PHC system, and there are no village medicine kits, a major concern

APOC Monitoring in Uganda - 5 in all communities visited. In some cases CREHWs and CBHWs were also CDDs. This shows that the potential for an integrated PHC system at the village level exists, but has yet to be formally forged. A bone of contention is that the CARE progralnme apparently provides a healthy allowance for its village "volunteers" in contrast to the CDTI system that encourages community level support for the village worker/CDD.

In conclusion, the team learned several important lessons as outlined below

tr CDTI implementation in Phase I Districts in Uganda is actually a transition from existing community based mass distribution programmes. This history means that the Monitoring Team was not studying the initiation of CDTI in a new area, but the adaptation of CDTI to established procedures. Respondents often had difficulty separating former with "new" or "improved" community contacts and activities.

o The position of CDD has political and at times ethnic overtones in most communities where either the LC1 members, especially chairpersons, or their favoured candidates are serving. This does not necessarily inhibit delivery of the ivermectin, but does affect the type of reward that many CDDs expect, that is cash.

o The payment of cash/kind in appreciation of CDD effort is a bone of contention in many communities. Although the District Oncho Coordinators supposedly suggested other options to the communities, cash payment of Ush 100/- was the common choice. In many communities, people see this payment as a barrier to receiving treatment.

o Communities are able to maintain census and record books. There are valuable resources for any PHC programme. The problem comes in reconciling community level entries with statistics reported at the district level. CDDs and District Coordinators are ofvarying opinions about the capability of the CDDs to undertake reporting, but clearly more training and supervision is needed in this area.

Village meetings are supposed to be the norm in Uganda under the present political climate, and offer an ideal means for introducing new programmes and

I making participatory decisions. While in most communities villagers reported taking part in CDTI decisions, in some, they felt that a powerful few were actually directing decisions. Local supervisors and coordinators need to play an active role in ensuring the participatory process is actually utilised.

o The lack of PHC and village based medicine kits was seen as a weakness of the programme by community members. They disliked trekking long distances for treatment of side effects and other common diseases.

APOC Monitoring in Uganda - 6 o The sense of ownership among communities varied widely. In many, people believed that ivermectin distribution is a goveffIment programme that the government should continue. In some, people felt that CDTI represented an effort by government to abdicate its responsibilities to the people. In a few, villagers said that they had been handling the prograrnme by themselves and felt confident continuing to manage it themselves. Obviously, communities have different "personalities," but it is also true that the level and quality of facilitation and supervision by health personnel affects community attitudes toward programmes. Efforts may be needed to re-introduce the progralnme in many communities. tr The reported financial contributions to CDTI at District and National levels does not appear to be in keeping with APOC desires to establish local commitment to running the programmes after five years. Ministries of Health and District Health Departments historically have been reluctant to put money into programming, but spend most of their budgets on overhead and recurrent costs. In addition, Districts generally have a poor local financial base. While such contributions as personnel look good on paper in APOC proposals, these will not be enough to guarantee an ongoing CDTI prograrnme.

The team found that the instruments need major revision including simplification. We decided that the short CDD interview in Category B villages was unnecessary. Sections of other interviews were repetitious and need to be rationalised. Some questions are difficult to frame in simple English, let alone to translate into a local language. CDDs in some areas had difficulty responding to the section on quality of training.

Finally, the team observed that monitoring is quite difficult in the rainy season. Futurl monitoring visits should be scheduled under more favourabie conditions.

The fotlowing recommendations are offered concerning the sustainability of CDTI in Uganda:

),..[ Retraining and supervision at all levels is needed to ensure accurate reporting of coverage from the village up through the national level as well as appropriate facilitation of community involvement by District level staff.

x The issue of appropriate show of appreciation for CDDs must be tackled promptly , as this appears to be holding coverage to only moderate levels. Re-education meetings are needed at village level where it is ensured that as many persons as i possible, male and female, are fully in attendance and contribute to the decision making process. This would also be a time to reinvigorate community commitment to the prograrnme, as it has not been fully established in all villages.

l For future monitoring, APOC should endeavour to identify some districts where ivermectin distribution is just beginning or one or two years old in order to get

APOC Monitoring in Uganda - 7 a truer picture of what the introduction of CDTI really entails

* APOC, Ministry of Health and the various District Health Departments need to re- evaluate their financial commitments to the CDTI process so that progralnme costs will actually be assumed by the local health system after APOC has phased out. A return to complete reliance on NGDO financial efforts after five years would represent a major setback for the programme.

),.( Effort is needed truly to establish PHC in these remote villages and integrate CDTI with it. The absence of village medicine kits, one benefit of PHC, is a major deterrent to participation in CDTI.

APOC Monitoring in Uganda - 8 TABLE OF CONTENTS

1. INTRODUCTION

1.1 Background on APOC

1.2 Country Background

1.3 Terms of Reference

2 METHODOLOGY

2.1 Population

2.2 Sampling

2.3 Instruments

2.4Instruments

3 RESULTS FROM HOIMA DISTzuCT

3. 1 Introduction to the Project Area

3.2 Sampling Process

3.3 Overview of CDTI Process

3 .4 Level of Community Involvement

3 . 5 Community Perceptions, Expectations and S atisfaction

3.6 Quality of CDD Training

3.7 Quality of CDD Record Keeping

3.8 Treatment Coverage

3.9 Health Personnel Participation

3 l0 Constraints to CDTI Implementation

3.1I Prospects for Sustainability

3.12 Summary

APOC Monitoring in Uganda - 9 3. 13 Conclusions and Recommendations

4. RESULTS FROM MASINDI DISTRICT

4.I Background to Masindi District

4.ZHealth System and Related Issued

4.3 Methods and Samples

4.4 Overview of CDTI Process

4.5 Level of Community Involvement

4. 6 Community Perceptions, Expectations and Satisfaction

4.7 Quality of CDD Training

4.8 Quality of CDD Record Keeping

4.9 Treatment Coverage

4. I 0 Health Personnel Participation

4.11 Constraints to CDTI Implementation

4.12 Prospects for Sustainability

5 RESULTS FROM KISORO DISTzuCT

5.1 History of the Programme

5.2 Selection of Study Communities and Team Orientation

5.3 Overview of CDTI Process

5.4 Level of Community Involvement

5. 5 Community Perceptions, Expectations and Satisfaction !

5 6 Quality of CDD Training

5 7 Quality of CDD Record Keeping

5.8 Treatment Coverage

APOC Monitoring in Uganda - l0 5. 9 Health Personnel Participation

5.10 Constraints to CDTI Implementation

5.11 Prospects for Sustainability

6. KASESE DISTRICT

7. OVERALL CONCLUSIONS AND RECOMMENDATIONS

7.1 Summary of Achievement of Monitoring Indicators

7.2 Conclusions

7.3 Recommendations

ANNEX: Sample Instruments

APOC Monitoring in Uganda - 11 List of Abbreviations

APOC African Programme of Onchocerciasis Control

CBHW Community Based Health Workers

CBTI Community-B ased Treatment (of onchocerciasis) with Ivermectin

CDD Community Directed Distributor

CDTI Community-Directed Treatment with Ivermectin

GRBP Global 2000 (Carter Centre) River Blindness Programme

LCI Local Council 1 - elected village level leadership council

LOCT Local Onchocerciasis Control Team

NGDO Non-Governmental Development Organization

NOCP National Onchocerciasis Control Programme

NOTF National Onchocerciasis Task Force

PHC Primary Health Care

SSI Sight Savers International

TDR Tropical Disease Research (UNDPAVorld Bank/WHO Special Programme of Training and Research in Tropical Diseases)

APOC Monitoring in Uganda - 12 1. INTRODUCTION

1.1 Background on APOC

1995, The African programme for Onchocerciasis Control (APOC) was established in December with the objectivi of setting up effective and self-sustainable community-based ivermectin 50 million treatment for onchocerciasis tlroughout 19 endemic countries in tropical Africa where people are atrisk of onchocerciasis. APOC is based on the Mectizan@ (ivermectin) Donation r {; .-, Programme of Merck and Company, Inc., and awarded its first country project glultt in p0' To late 45 projects have been approved, 36 of which are specifically devoted to field operations ,} on for Community Directed Treatment with Ivermectin (CDTI). Field project proposals are based (NOCPs) and a partnership between APOC, the National Onchocerciasis Control Programmes several Non-Governmental DevelopmentOrganzations (NGDOs). Each project is funded for a maximum of five years. Over this time it is expected that APOC support will decrease proportionately to that of the other partners, and that the cost per individual treated will reduce by 9Oo/o. Oncethis has been achieved, it is expected that the particular National Onchocerciasis Control programmes (NOCps) will continue to manage their own CDTI activities for upwards of l5 years to guarantee effective control ofonchocerciasis.

CDTI is an approach to community involvement in disease control that was field tested with support frornthe UNDP/lVorld Bank/WHO Special Programme on Research and Training in fropical Diseases (TDR) With CDTI, communities obtain their ivermectin from the health for ,.*i.., select their own distribution agents, or Community Directed Distributors (CDDs) training, determine both the date for and mode of distribution, and through their CDD, gather information about the coverage that helps determine programme success. The TDR projects found that communities were capable of managing their own ivermectin distribution with facilitative support from the health services and achieved as good if not better coverage than distribution activities organtzedby district health services centrally. It was concluded that CDTI offered the best hope for sustainable onchocerciasis intervention at the community level, and was thus adopted by APOC as its central strategy.

CDTI can be contrasted with the former approach of Community Based Treatment (CBTI). CBTI is a procedure wherein health providers determine the steps and the schedule to be followed. Activities are based in the community but not owned by the community. In contrast, CDTI is a process built on the experience of community members and thus enhances decision making and problem solving capacity. Activities are both in and of the community.

1.2 Countr.v Background

Countries with the earliest approved CDTI projects, and thus locations where implementation would have been ongoing for at least one year, include Malawi, Uganda, Nigeria and Sudan. The current Independent Monitoring exercise is focused on the latter three. This report describes the experiences and findings of the four teams that visited Uganda. Important background information is that Uganda had started community mass distribution of ivermectin since 1992 Thus CDTI was not introduced in a vacuum, but was adapted to what was on the ground. Two

APOC Monitoring in Uganda - 13 NGDOs collaborated in those early efforts and continue to be involved, Sight Savers International (SSI) and Global 2000 River Blindness Program (GRBP). Table 1. I traces the history of treatment in the four original districts, and those included in this study.

Table 1.1 Treatment History in Phase I Districts

DISTRICT Number Treated per Year

1992 1 993 1 994 1 995 1 996 1997 1 998

Hoima 15,100 34,378 40,274 42,637 nla 49,780 42,954

Kisoro 8,9't6 10,362 13,879 12,262 12,142 13,653

Kasese 32,135 37,615 49,307 48,059 46,935 started 9/98

Masindi 29,300 31,825 35,833 37,771 nla 37,268 36,877

TOTAL 44,400 107,2s4 124,094 143,594 146,12s

Table 1.2 shows current programming information on the four districts where the teams visited, that is Hoima, Masindi, Kisoro and Kasese. Prior to the teams' visits, the NOCP in Uganda reported for 1997, that in 373 hyper- and meso-endemic communities, 148,709 eligible persons had received treatment. This figure is adjusted from the figure of I 5 I ,9 I I available at APOC .

Prior to APOC, Onchocerciasis control activities based on mass distribution of ivermectin began in Uganda in 1991, with assistance from the German development agency, GTZ Over the ensuing six years, annual treatment rose from 3,5215 individuals to 96J,183 (1996) The target population is estimated to be 1.3 million people. At present, four NGDOs are involved in the NOCP including Sight Savers International (SSI), Global 2000 River Blindness Programme (RBP) (The Carter Centre), Christofell Blinden Mission (CBM) and World Vision International O[VI). On the local level, The East Ankole Diocese of the Church of Uganda is also involved.

The NOTF progress report dated i3 February 1998, noted that CDTI had not actually been applied in the four districts during the 1997 distribution due to, "delay in receiving funds from APOC." An attempt at CDTI was apparently undertaken in Kasese, but due to instability and insecurity in the area, people treated were based in camps. This concentration of people may have made it easier to undertake CDTI and may also have accounted for the extra people present to yield a coverage of l09oh. The Onchocerciasis Coordinator from Kisoro explained that distribution was undertaken in early 1997, using the previously established procedures even a though funds had not arrived, in order not to disappoint the community. A challenge to the Monitoring Teams was to learn whether, in the ensuing months since February 1998, CDTI had been instituted in the community.

APOC Monitoring in Uganda - l4 Tabte 1.2 Summary of 1997 Programme Activities in Four Phase I Districts

From February 1998 DISTRICT Total Progress Report Hoima Masindi Kisoro Kasese

Number of 119 98 31 125 373 Communities

Coverage Rate 75% 80% 7s% l09Yo 86% (reported by NOCP)

Supervisors Trained l0 1l 8 11 40

Number of CDDs 266 268 ll5 324 973 Trained*

NGDO SSI SSI RBP RBP *at least one CDD per community

At the present time, 19 Districts are under treatment from Phase I through Phase IV. Ten of those districts receive NGDO assistance from GRBP, 4 from CBM, 3 from SSI and 2 fromGTZ Other areas of the country do not appear to be endemic from the REMO maps. Most of the endemic areas are in the west, with the exception of Mbale in the east.

1.3 Terms of Reference

At present, TDR is sponsoring additional research to identiS potential indicators for sustainability of CDTI. The monitoring of ongoing APOC projects in the field offers another avenue for determining the factors and processes that enhance implementation and sustainability of CDTI With this potential in mind, APOC set the following terms of reference for the monitoring teams:

1 Succinctly document how ivermectin treatments were undertaken in a number of sampled communities/villages in DistrictslLocal Government Areas with approved CDTI projects.

2 Assess community involvement in - drug collection, decision making on the period and mode of distribution, the selection of distributors; and the willingness of the community to bear these responsibilities as designed in the CDTI process.

J Document community perceptions of CDTI processes, especially the issue of ownership, and expectations for onchocerciasis control, and based on these perceptions and expectations, determine the degree of satisfaction of the community with the different programme activities and outcomes.

4. Assess the quality of training received be community selected distributors (CDDs)

APOC Monitoring in Uganda - 15 5 Examine the record bootis of the CDDs and assess the quality of record-keeping and their ability to keep accurate records. The same applies to the health services staff on the project.

6 Determine the number of communities ad eligibles treated and compare your findings with the records of the CDDs and the records at the other levels (e.g. district, central).

7 Determine whether the health personnel participated in ivermectin distribution, and assess the degree and quality of supervision by the health staff(and the quality of training and/or orientation of such staffto CDTI).

8 Identify constraints in the distributions and make recommendations to the NOTF and the Management of APOC on corrective measures necessary before the next treatment

9 Discuss the prospects of sustainability based on the findings INDICATORS FOR I NDEPENDENT M ONITORING above. EFFECT

E1 Number oftarget communities which decided on the It should be noted that items 3 and 9 were period or method oftreatment planning and added to the original terms at a E2 Number of target communlties that declded on the criteria instrument development meeting of the for CDD selection Independent Monitors on 14-15 September 1998, in Ouagadougou, Burkina Faso, OUTPUT o1 Number of refusals two months after diskibution headquarters of APOC. 02 Number eligible persons that dropped out of the treatment due to - Cost (Cameroon), feeling of well being (all 2. METHODOLOGY countries) firom year 2] o3 Number of at-risk villages treated The methodology for the Independent o4 Cost per person treated o5 Number of Communities where CDDs were changed by Monitoring was developed at the meeting of the community after the first treatment nine of the Monitoring Team members in o6 Number of communities in which the CDD is a part of or is Ouagadougou from 14-15th September 1998, supervised by the primary health care system with facilitation from the APOC Management 07 Number of target communities which received health ivermectin Team. The team considered the nine education about importance of extended treatment in the terms of reference above and objectives o8 Number of children 5 years and above who received compared them to the various process ivermectin indicators developed by APOC Management for Independent Monitoring as seen in the INPUT ll Number of communities with trained CDDs attached box. The team was also guided by t2 Number of communities/projects that experienced late Treatment I the manual, Community-Directed supply or shortage of ivermectin

with ectin: a Practical Guide for l3 Number of projects which experienced late supply of Trainers of Community-Directed Distributors, funds published by APOC in 1998 It should be t4 Number of target communities which collected ivermectin the health centre noted that while the Guide was not available from t5 Number of CDDs with measuring device for height programmes at the time they began to country t6 Number of treated communities with summary forms

their CDTI efforts, the basic content was 17 Number of health centres without records

APOC Monitoring in Uganda - 16 presented during training oftrainers sessions in each country through handouts, lectures and videos.

Team members worked in groups of three to address the terms of reference and subsequently to l) develop indicators for each, ensuring that those appearing in the box to the right were included, 2) identify variables for each indicator, 3) design questions, observational techniques and/or record reviews to measure the variables, and 4) determine target groups for each question. The group convened as a whole to merge all questions and items addressing a particular target group, thus forming instruments. These were then reviewed and streamlined to ensure that all indicators and objectives were covered.

2.1 Population

Four broad groups of persons were studied including l) village leaders, 2) household heads and members, 3) CDDs, 4) health personnel in the Local Onchocerciasis Control Team (LOCT) The primary nature of the Independent Monitoring was process documentation of the potential of sustainability of community-directed efforts at onchocerciasis control. Therefore, in-depth, qualitative study of a total four communities in two sub-districts was undertaken. These four communities were designated "Category A" villages.

In addition, in order to address some of the more quantitative indicators, the Monitoring team visited additional communities briefly to determine whether CDTI had in fact been introduced and whether the CDDs had been performing as trained. These additional communities were termed "Category B" villages.

2.2 Sampling

Sampling of Category A villages was based on maps and lists of villages in each district. Two sub-districts or parishes with endemic communities were selected by ballot from each district. Within each of those selected parishes, two villages were randomly selected after stratification based on nearness to a health facility (near: within 5 km., far: beyond 5 km.) Within each strata, one village was selected by balloting. In parishes without nearby health facilities, two communities from within the whole parish were selected by balloting. This yielded four Category A villages per district.

Category B villages were selected based on convenience due to the short time period available for the activity. Effort was made to visit up to five villages surounding each Category A village for administration of two simplified instruments. Thus, there was a maximum target of 20 Category B villages in each district.

2.2.1 Category A Villages

r Concerning CDDs, all those found in the villages were interviewed where available

I Households for coverage surveys were selected by a two-step process. First, from the

APOC Monitoring in Uganda - 17 centre of the village, a direction was chosen by spinning a bottle. Secondly, within each dwelling only one household was selected. Where more than one household lived in a dwelling, one was chosen by balloting. Each dwelling was visited in the chosen direction until a total of 350 persons were recorded. In cases where there were not enough dwellings in a particular direction, the interviewer returned to the centre of the community and chose a second direction. Household was defined as a group of people who eat from the same pot.

r The most senior male leader and most senior female leader were interviewed in each village. Where these were not available, the next most senior person was interviewed.

r For group discussions, one adult male group and one adult female group were formed purposively by asking for 6-8 community members from different sections of the village.

2.2.2 Categorv B Wlages

r A minimum of two convenient households were visited in each village, and the head or another senior household member was interviewed, primarily to determine whether distribution had taken place (i.e. an assessment of coverage of villages).

2.2.3 Health Personnel

r In each district, the onchocerciasis coordinator was interviewed.

r At least three other LOCT members were interviewed. Effort was made to ensure that at least one person based in each parish was visited.

2.3 Instruments

Seven basic instruments were developed as outlined below. A summary of instruments and samples are found in Table 2. The instruments are appended to the report.

o In-depth Interview and Record Review for CDDs in Category A villages

Major issues covered included experience on the job, nature of training received, information of CDD selection process, drug management, management of side- effects, procedures, and quality of record keeping including verification procedures, and attitud toard the work.

In-depth interview of health personnel and Record Review

Health workers were asked about their orientation to CDTI, meetings with the community, supervision, constraints, management procedures and quality of record keeping.

APOC Monitoring in Uganda - 18 tr Community Group Discussion Guide in Category A villages

Discussions covered the full experience of or$anising and implementation of the CDTI programme in the village with an aim of ascertaining the level and nature of community involvement.

tr Household Head Brief Knowledge Survey in Category B Villages

A few of the issues covered in the Category A discussion groups were posed to Category B household heads to determine whether CDTI had been inplemented

Household Coverage Survey Form in Category A villages

A format that had been field tested by APOC was used to determine the number of household members who had received ivermectin at the last distribution.

o Key Informant Interview with Village Leaders

Leaders were asked about how the prograrnme started, the distribution process, health personnel roles, village decision making, and CDD selection and performance.

Table 2.1 Summara of Instruments and Sampling Issues

INSTRUMENT SAMPLE

In-Depth Interview and Record Review with CDD all available CDDs

Household Coverage Survey minimum of 10 households or until 350 persons counted per village

Brief Household Head Survey convenience sample of 2 households in Category B Villages only per village

Key Informant Interview of Village Leaders 1 most senior male available 1 most senior female available per village

Group Discussions 2 groups per village. 1 male, I female Note that due to time constraints, group 6-8 persons per group representing discussions were sometimes alternated by different sections of the community gender in the selected villages

Health Personnel Interview and Record Review 1 Onchocerciasis Coordinator per District 3 LOCT members

APOC Monitoring in Uganda - 19 2.4 Procedures

Teams consisted of at least one independent monitor, one local counterpart and field assistants hired locally in each district. The Public Health Department of the District helped make advanced contact in selected villages. On arrival in a district, the Public Health Department staff assisted in identifying field assistants. Meetings were held with these field assistants to review the questionnaires and make local language translations. The Calendar in section 2.4.1 summarises the team activities from planning in Ouagadougou through to field implementation.

2.4.1Time Frame t

::;, 'i-r-:llltl:i i 1 :j::i::::::::::::.:i::. :::Mg.i{iii:::ii:::i:'::i:ii:::: .

13 t4 l5 l6 l7 18 19 Arrive planning planning finance - depart Ouaga in transit arrive Ouaga meeting meeting preparations Uganda

20 21 22 23 24 25 26 Preliminary Meeting with Travel to Orientation Village Village Village meetings NOCP, field sites; of teams, Visits Visits Visits with team WHO, etc.; Meeting Notification travel to sites LOCT of Villages

2',7 28 29 30 I 2 3 Village Village remaining return to preliminary preliminary Departures visits; Visits Village B Kampala report report preliminary and health writing writing, data analysis worker present to interviews NOTF

4 5 6 Departures Departures Arrival at home

2.4.2 Team Memberships

Table 2.2 Independent Monitoring Team Composition

Hoima Masindi Kisoro

Independent Daniel Obikeze Bamikale Feyisitan, William R. Brieger Monitors Oka M. Obono

Local Counterparts Josephine Nambose Grace Kyomuhendo Simon Arumadri

Interviewers/ Businge Francis, Nyakato Kabyanga, Frida Ndimo, Assistants Namirembe Gorret Kansime David Fabian Kabizi

APOC Monitoring in Uganda - 20 3. RESULTS FROM HOIMA DISTRICT

The review team was led by Prof. D.S. Obikeze from the University of Nigeria and Dr. J Namboze, of WHO/Kampala ofiice and a member of the NOTF.

3.1 Introduction to the Proiect Area

Hoima district was created out of the former Bunyoro District. It is located towards the Western borders of Uganda, 180 kilometers from the state capital, Kampala. The projected population is 250,000 (1998), and is located on the central part of the western border of Uganda.. Administratively, Hoima district is made up two counties, 11 sub-counties, 46 parishes and 119 villages. Each village is administered by a nine membership local council headed by a chairman.

Farming is the major occupation in Hoima district with tobacco as the main cash crop. Christianity and Islam are the two major religions in the district. Hoima is a multi-ethnic district with the Banyoros, the Alurs and the Lugbaras as the most important groups.

Onchocerciasis mass treatment started in the area in 1991 undertaken by an NGO, AVSI. The NGO withdrew from the area in 1992 and was replaced by the Ugandan Foundation for the Blind. There were later joined by Sight Savers International. APOC is working with Uganda NOTF to implement CDTI, to which Sight Savers is a member. The programme to implement CDTI formally took offin 1996. However due to the late release of funds, and inadequate orientation of those executing the programme, the CDTI process could not be started in 1996. Implementation was actually started in 1997 .

3.2 Sampling Process

Two parishes were randomly selected from the endemic communities. Then the villages in each of these were grouped into the near (less than 8 km) and the far (8 km and more). Using random sampling one in each of these categories was chosen. The parishes chosen were Bulyago and Kisukuma.

In Kisukuma , the two core villages (category A) chosen were namely Kyakasatu (near) and Bukona (far). In Bulyago, the two chosen were Kyakabale (far) and Kiraira (near). Following the design, five adjacent villages to each core village were surveyed to validate the observations in the core villages. Those around Kyakasatu (category B villages) were. Namudeija, Haibale, Bwikya and Kisukuma. Around Bukona the following category B villages were visited: Marongo, Kanyira, Buhirigi and Kitunga.

The five adjacent villages for Nyakabale were: Kikonoka, Mbarara, Kaboijana, Kyakataba and Bulyago. Around Kiraira were: Katikara, Bugadere, Bineneza, Kalyago and Busunga. This is summarized in Table 3.1 below.

APOC Monitoring in Uganda - 2l Table 3.1 Parishes And Districts That Were Sampled And Visited

Kisukuma Kyakasatu Namudeija (near) Haibale Bwikya Kisukuma

Bukona Marongo (far) Kanyira Buhirigi Kitunga

Bulyago Kiraira Katikara (near) Bugadere Bineneza Kalyago Busunga

Kyakabale Kikonoka (far) Mbarara Kaboijana Kyakataba Bulyago

3.3. Overview of CDTI Process

The CDTI process requires that certain initial steps be followed namely - contact with community leaders by the health personnel to appraise them of the CDTI process and secure an appointment for meeting with the entire community. In the four villages of Hoima district visited, we found no evidence that these steps were strictly adhered to. Further discussions with officials at the district level revealed that a slightly dif[erent procedure was followed in Hoima district. This is elaborated in the following quotation by one of the ofiicials:

It is important to note that the ivermectin distribution has been on-going in this district since the lasl six years and some structures for this distribution have been in place. When we were asked to change to CDTI process of distribution, we first contacted the village chairmen requesting them to summon all members of the community. At that meeting, we explained to them the components of the CDTI process and requested them to elect CDDs from among themselves. The CDDs were not elected in our presence at those meetings, rather the communities promised to undertake the elections andforward the names to the office. Subsequently, names of CDDs from the communities were sent to us for troining.

From the above, it was clear that the health personnel were not in position to certify on how CDDs were elected.

APOC Monitoring inUganda - 22 Furthermore, it was evident from interviews that the discussions at that meeting, did not register in the minds of the audience a clear distinction between the CDTI and the previous CBTI approaches. One apparent consequence of this was that in s6me communities the old CBTI pior.r, was still being followed while in others, the new CDTI process has been adopted in the selection of the CDDs and other decisions regarding the timing and mode of distribution of ivermectin. Thus in six of the villages the selection of CDDs was reported as having been done by the health workers, in three by the village meeting, in five others it was done by the chairman and in eight villages the respondents were not sure how the selection was made.

It follows therefore, that no uniform procedure was followed in all the villages in the district in the selection of CDDs, and furthermore, only l3% of villages selected their own CDD in accordance with CDTI guidelines. Nevertheless, the distribution of ivermectin in this district is being carried out in a fairly well organized manner.

3.4 Level of Communi9t Involvement

There are notable variations in the level of community involvement in the decision making process among the various villages. On the whole, the involvement of the communities in deciding the timing and method of distribution of ivermectin was minimal. Major decisions on these issues were reported to have been made by the CDDs and the health workers.

Furthermore, there was an instance where ivermectin was distributed all the year round and individuals were free to decide when to go and collect the drugs as they wanted. Thus a woman leader in Kiraira, when asked how the time for distribution was decided on, said:

No such decision was made. You lcnow when your period has expired and you go to the distributor to collect the drug when you want. This is usually every.six month or three months depending on the severity of your illness.

This therefore poses a very dangerous situation with regard to dosage, accountability and measurement of coverage.

In all the communities, we observed unwillingness on the part of the communities to share responsibilities in the execution of the CDTI process. Thus, with the exception of announcements at churches and other ceremonies to aid public mobilization, no other form of material, financial or logistical support was rendered to the CDDs in carrying out the services to the community. This arises as a result of the fact that the communities have not come to regard the CDTI as their own project to be supported by themselves. This may indicate a failure on the part of both the health personnel and CDDs to properly inform communities of their responsibilities in the project One participant in the Bukona women's focus group discussion had this to say:

We don't assist the distributors. This is because we l

APOC Monitoring in Uganda - 23 about 100/- per family. Even i/ it is as simple as tea, during the distribution we will be able to provide this.

On the same issue, a participant at the men's focus group in the same area said, "If we can be educated about the process, we will contribute but now we do not know anything about it." Further, there is no evidence of follow-up or supervision of the activities and functions of the CDDs by the communities. The communities rarely held discussions with them nor planned future programme improvements. All these have far reaching implications for sustainability and eventual takeover of this project by the communities.

3.5 Co mmuniUt Per c eptio ns, Exp ectatio ns and S atisfactio n

Whereas the community members/villagers see ivermectin distribution as an important health service, they have not come to regard it as different from any other health programmes of the government to be organized, financed and executed by agents of government. This partly explains why their expectations from the programme are limited to receiving the drugs and making no contributions towards its success especially in the assistance for the CDDs. To that extent, the communities appear satisfied with being passive recipients or benefactors of CDTI programme. Arising from this perception of the purposes and ultimate objectives of the programme, it was not possible for the communities to generate indicators of success/achievement. However, the following measures /indicators of progralnme success could be extracted from in-depth interviews and discussions from some of the groups;

Sustained increase in coverage until 100% is achieved; a Steady reduction in number of persons with onchocerciasis disease; a Observable increase in positive attitude of the community and their willingness to contribute to it's success, Reduction in the number of persons with side effects.

3.6 Qudi9t of CDD Training

In depth interviews with CDDs showed that there were two training sessions which were in many ways qualitatively different. We identified the two training sessions as Trl andTr2 Trl was organized for the CDDs initially selected by the communities whereas Tr2 was organized for CDDs recruited later in the programme and most often selected by the local chairman or the local health worker.

It was found that the Trl sessions were fairly well supplied with training materials comprising about 60o/o of the listed items. On the other hand, Tr2 sessions were far less equipped with I training materials comprising only of about20Yo listed items. With regard to training method, both groups adopted a mixture of passive, non-participatory and active, participatory approaches. In both sessions the class size was very large, ranging from 40 in Nyakabale to 60 in Kiraira, contrary to the CDTI recommended class size of about 15 for this cadre of trainees The training venues were adequate and familiar but the one day duration reported by most respondents fell short of recommended period of 2-3 days for that class size.

APOC Monitoring rnUganda - 24 The course content in both training sessions was found to be satisfactory. Between 50-80% of listed recommended topics were covered during the training sessions.

3.7 Oualiry of CDD Record Keeping

In all the villages visited the CDDs had notebooks and exercise books for their own record keeping. Their knowledge base was inadequate and the record books were found to be improperly kept. Gaps and errors were observed in some of the records. These included omissions of names and mis-recording of absence as refusal. Furthermore, we found discrepancies between what CDD were taught to keep and what was required of them in the manual and in the monitoring tool. For instance, while the manual recommends sex as the third column of the record book, the CDDs were instructed not to record this information, hence the records inspected had no column for sex.

Secondly, while the monitoring instrument for CDDs page 5 (C-C3), requires them to keep a summary of distribution statistics, the CDDS were not taught to keep such statistics. These were considered to be the responsibility of the health worker who is the sub-county supervisor. Consequently, any distributional malpractices by CDDs were not reflected in the records kept at sub-county level. Due to these errors and lapses in record keeping, the CDDs do not have a clear view on coverage at any particular point in time. They do not have proper accountability of the drugs delivered to them.

3.8 Treatment Coverage

From the Table 3.2,it can be observed that the coverage reported by the CDDs (64%) for the four sampled villages is higher than that derived from our monitoring sample (48.8%). However, further analysis shows that the main differences come from the two sampled villages, Kyakasatu and Bukona in Kisukuma parish. In both of these, there is tendency of over-reporting with a difference of about 24.4% percentage points in Kyakasatu and 35.4% percentage points in Bukona, between the reported and observed coverage rates.

Table 3.2 Treatment Coverage in Hoima District

Village House- Sample No. % Treated Village Bo. CDD % Treated holds Pop. Reported in Sample Census Reported by CDD sampled Treated from CDD Treated

Kyakasatu 18 103 56 54.4 605 489 80.8

Bukona 14 101 38 37.6 550 402 73.0

Nyakabale 20 106 59 55.7 696 383 55.0

Kiraira 18 103 48 46.6 396 510 52.2

TOTAL 70 413 201 48.7 2787 1784 64.0

APOC Monitoring in Uganda - 25 The differences between sampled and reported figures in the villages of Nyakabale (0 07Yo) and Kiraira (-5.4%) in Bulyago parish were within tolerable margins. The gap was great in Kyakasatu (-26.4%) and Bukona(45.a%). None of the survey sample'results and two of the CDD reported results achieved the desired minimal coverage of 65%o. Based on the analysis above, the reported coverage rates from the district as a whole maybe questionable.

Also it should be noted that th oficial report obtained from Sight Savers indicated that in 1998, eleven villages received no treatment.

3.9 Health Personnel Participation !

The following health personnel were interviewed for this data: the District Oncho Coordinator and three sub-county Oncho Supervisors, one of whom was stationed at the district office.

AII the health personnel received CDTI orientation as well as training for trainers during which all the relevant issues and topics on CDTI procedures were covered.

IEC activities carried out were not exactly in accordance with CDTI procedure. For instance, instance people were given wrong messages on the management of epilepsy using ivermectin. In addition, a number of the major aspects of CDTI process, including partnership, were not adequately communicated to the communities.

There was evidence that the health personnel at both the district and sub-county levels carried out some supervisory activities of CDDs. In at least one case, the health worker also held discussions with community members on problems facing CDTI implementation after discussing with the CDDs. However, there was also an instance of a community (Bukona) where it was said that nobody has ever come for oncho activities even though health workers visited for other health matters. According to one key informant:

The health workers do not come to supervise activities of the distributors. Thry only visit our community for sanitation activities. When they want to talk with the distributor, they call him in their ffice at the health centre.

All the health personnel interviewed reported the existence of adequate facilities for drug storage. They had no storage constraints. The health personnel normally delivered the drugs to the sub- counties of their catchment areas. The quantity of drugs delivered at each occasion was estimated using the formula [Total population x 3] for the three milligram tablets. According to them, drugs were normally received on time except early this year when delivery was delayed due to logistic problems in changing from the 6mg to the 3mg formulation.

However, we observed confusion in at least two of the communities arising from the change of 6mg to 3mg formulation. Both the distributors and villagers did not clearly understand the change as was indicated by one participant in a women's focus discussion in Nyakabale:

We do not understand why they keep changing the drugs. It may be because lhey

APOC Monitoring rnUganda - 26 are making them stronger. This is because they started grving us one tablet, after our bodies got used they gwe us two tablets. Now they have made a stronger drug that has to be taken in two doses of two tablets each twice q year.

The drugs requirements by the communities are calculated by the health workers at sub-county level and not the CDDs. There is uncertainty among the health workers and the CDDs on the mode of treatment of absentees during distribution, as well as those missed out during central distribution.

3.10 Constraints to CDTI Implementation

The major constraints reported at the village level were refusal to take the drugs arising from adverse side effects and fears generated by them. There are also problems of improper orientation which impede proper implementation of CDTI process. Secondly, the intra-village roads were very bad and in some cases impassable leading to inaccessibility of some homes. Constraints highlighted at the CDD level include:

a Inadequate training, particularly with regard to record keeping; Lack of stationary for proper record keeping and other working materials; Transport problems; Lack of incentives from the communities; a The practice of some villagers discouraging others from taking the drug.

At the district level, delays in drug delivery were due to temporary absence of offrcer in charge of storing ivermectin. The major constraints identified in sub-county and district levels were transportation difficulties and the absence of CDDs from base due to involvement in other economic and social activities. It was also revealed that some CDDs deliberately keep away from the health personnel to prevent them from inspecting their badly kept records.

In addition to these, we also observed constraints to proper CDTI implementation arising from ethnic composition of the villages. IT was noted that the recruitment of CDDs followed ethnic lines. This no doubt has effects on the pattern of ivermectin distribution among various ethnic groups in the community.

3.ll Prospects for Sustainabili?t

There was no clear evidence of community follow-up and supervision of CDD activities as a demonstration of their commitment to the sustainability of the programme. However, the following indications of future prospects of programme sustainability could be deduced from members of the community:

a Increasing awareness of the usefulness and effectiveness of ivermectin for oncho treatment through village seminars and IEC activities;

Continuity of house-to-house delivery approach is likely to encourage community

APOC Monitoring tnUganda - 77 interest in CDTI as requiring the community members to walk long distances to obtain the drug may discourage especially those who are not sick;

There is a general promise and expression of intention to continue participation in the CDTI process by CDDs and Health personnel interviewed. Among the health personnel, reasons given for this intention to continue included service to humanity and the fact that they were already working as health workers as one of the health personnel put it:

I am already a health worker and therefore cannot refuse to serve the community in the eradication of onchocerciasis, under the CDTI process.

3.L2 Summary of Results from Hoima District

l) The CDTI procedure and steps in approaching the community had not been followed. Consequently, both the communities and the health personnel could not made a clear distinction between the CBID and the CDTI procedures.

2) There is some evidence of IEC activities but the emphasis seem to be only on making the villagers accept and swallow the drugs without observance of the lard down CDTI procedures.

3) Community involvement in the decision making process regarding the selection of CDDs, when and how to distribute drugs, etc was minimal. Most decisions on these matters were made by the chairman, health worker or the CDD.

4) The CDDs were regarded by the community as experts in the area having undergone a training process, the purpose of which was primarily to assist the government execute it's programme. Consequently, they saw it as a responsibility of government and not themselves to carry out the necessary supervision and follow-up activities.

s) In general the communities have not made any financial and material contributions towards the work of the CDDs, primarily because they have not been made to see the programme as they own or even as a partnership with government.

6) Training of CDDs were not adequately planned, uniformly executed and was not comprehensive enouph for the functions required of the CDDs by the CDTI process.

7) Several errors and mistakes were identified in records of the CDDs resulting in improper accounting of the drugs and measurement of coverage.

8) Wide discrepancies were found in the coverage rates reported in CDD records compared with those derived from our sample thus calling the statistics produced by the CDDs to question.

APOC Monitoring in Uganda - 28 9) There was evidence of supervision of CDDs by the health personnel although the effectiveness was not the same in all communities'

l0) Drug management was problematic due primarily to improper record keeping by the CDDs. There was also uncertainties among the CDDs and health workers on how to deal with cases of people who were absent during drug distribution and those that failed to turn-up at central collection points.

change in 1 l) There is no clear indication of sustainability unless there is a remarkable the perception and attitude of the people towards the programme. Under the present environment the possibility of take over of the progralnme by the communities is far-fetched.

3.13 Conclusions and Recommendations for Hoima

1) Undertake an enlightenment campaign to explain further the main features of CDTI.

2) A programme of education involving community leaders, interest groups in the area such as women, church and youth groups should be planned and carried out with a view to making them to see the progralnme as their own and accept responsibility to contribute to it's success and continuation.

3) All forms of CDD training should be standardized in terms of planning, organization, materials used, content, method and duration.

4) In training of CDDs, special attention and emphasis should be placed on record keeping and basic monitoring statistics of drugs.

s) A uniform policy should be developed to guide late treatment of those who were missed during the primary distribution.

6) There is need for the NOTF to constantly monitor the programme activities with visits to particularly those communities reporting very good and low coverages

7) The timing for distribution should be clearly agreed on by members of the community so that there is no confusion caused by variations in individual treatments,

8) Intensive awareness campaigns must be undertaken by the NOTF to ensure that explanations on the drug formulations are made clear in the community.

APOC Monitoring inUganda - 29 4. RESULTS FROM MASINDI DISTRICT

The Monitoring Team that visited Masindi District consisted of O.M. Obono and B. Feyisetan, as Independent Monitor, and Grace Kyomuhendo as local counterpart.

4.1 Background of Masindi District

Masindi District is located in the mid-western part of Uganda, approximately 208 kilometres from Kampala. It borders Gulu District in the North, Kiboga in the South, Hoima in the South-west, and the Democratic Republic of Congo in the West, The District is located at an average altitude of 1295m, situated between latitudes 1"22' and 2'20'North of the equator, longitude 31"22' and 32"23' East of Greenwich. It comprises a total area of 9,326 sq. km., of which 8,087 sq. km. is land area. The arable land covers a total areaof 7,332 sq. km.

The climate is favourable to farming activities, with a bimodal rainfall pattern that leaves the district with about 1200mm of rainfall annually. Wide inter-annual variations among high rainfall, medium rainfall, and low rainfall areas have been recorded. Thus the natural vegetation is forest, dry and humid savannah with elephant grass prolific throughout the year.

Masindi District has an estimated population of 333,800 people, with an annual growth rate of 2.41%. Current projections put the population at 369,600 by AD 2000. The distribution pattern ranges from sparse in most parts, with a small urban concentration of 5.5%. Densities range from 0-4 persons per sq. km. to 250, or 35 persons per sq. km. of land. The highest concentrations (of 250+) are found in the three sub-counties of Karujubu, Nyangahya, and Masindi Town Council. 53o/o of the total population is aged <15; 15.3% is aged 65*, 4161 44o/o ts within "the productive years". The female population is higher than the male population at ages below age l5 years, but lower at ages above it. According to the 1991 Ugandan census, the crude birth rate (CBR) stood at 52.4 per 1,000 population, with an indication that 18.6lYo of all births were to mothers aged 12-19 and 12.26Yo of the total births were to mothers aged 35+.

An overwhelming 94 syo of the Masindi population is engaged in agriculture, mostly at the subsistence level. Less than 6Yo are involved in petty trade and other commercial activities. The educational level is markedly low, with 37 l% of the population aged 6+ never attending school. The illiteracy rate is higher among the female population, although enrollment has generally increased with the introduction of the Universal Primary Education (UPE) scheme, an observation that points to the implication of widespread poverty in the district's crisis of underdevelopment. The drop-out rate is nevertheless high. There are 163 Government Aided Primary Schools, 1l Private Primary Schools, 7 Government Aided Secondary Schools, I I Private Secondary Schools, I PTC, I NTC, and 2 Technical Institutions.

Masindi is an area of rich ethnic and linguistic diversity, with a combination of over fifty-six distinct groups. The most dominant of these are the Banyoro/Bagungu, who constitute nearly 60% of the total district population. The Alur/Jonam/Aringa form another ethnic cluster constituting 5.3o/o and the Baruli form 4.5o/o of the population. Nearly all ethnic groups are reportedly represented in varying degrees of significance in Masindi. The district also harbours

APOC Monitoring in Uganda - 30 many peoples from other countries who over time have permanently settled there. These latter category include Rwandans in the Kimengo Sub-County, Kenyans in Kiryandongo, Sudanese and Zureans in Mutanda, and some Somali peoples in Kigumba Sub-County. The implications that this broad ethnic mix hold for communication within the region are obvious from the viewpoint of the current CDTI monitoring exercise.

The patterns of migration and permanent settlement preclude the exclusive development of traditional systems of rulership. The community leadership structure is organised around the Local Council (LC1) at the village level, complemented by clan heads.

4.2 The Health System and Related Issues

Important health related problems in the area include chronic malaria, resulting in high cause- specific infant mortality, tuberculosis, onchocerciasis (locally referred to asfararia, or kisararu), and a possibility of high levels of HIV/AIDS.

Prior to APOC, Onchocerciasis control activities based on mass distribution of ivermectin began in Masindi in 1991, with assistance from the German development agency, GTZ. The present report describes the experiences and findings of the Independent Monitoring Team that visited Masindi District in Uganda. Prior to the team's visit, the NOCP in Uganda reported thatin373 hyper- and meso-endemic communities covered by APOC, l5 1,91 I eligible persons had received treatment, an APOC coverage rate of 86% Of this, Masindi is recorded as having a district total of 36,877 eligible persons who had received treatment, or 74Yo of total population of areas affected in the district, and24.3Yo of the national total.

Coverage figures have been steadily declining since 1995, from37,771 in that year to 37,268 rn 1997, and36,877 in 1998. Between L992 and 1998, however, general annual treatment in the district rose from 29,300 individuals to 36,877 , reflecting a 25.9o/o increase over a reporting period of six years. At present, Sight Savers International (SSI) is the agency involved in ivermectin distribution in Masindi under APOC, although its earliest contact with the endemic communities dates to 1991.

A coverage rate of 80% is reported by the NOCP for the 98 hyper- and meso-endemic communities in Masindi under the first phase of APOC funded activities. Our independent monitoring activities however indicates that the number of communities for records exist is actually 96. Kinyambaka village in Kinyara Sub-County was displaced by the establishment of a sugarcane plantation in the area. In addition, figures do not exist for Kimanya village in Kasongoire Sub-County because the treatment records were burnt in a fire incident that destroyed

D the house in which the records were kept.

APOC Monitoring in Uganda - 3l Eleven Supervisors and 268 Community Directed Distributors (CDDs) were trained under this phase of the prograrnme. The distribution of the trained Supervisors is summarizedin Table 4.I below. Further details of our monitoring exercise as it concerns quality of training are provided in a subsequent part ofthis report. Table 4.1 Distribution of Trained Supervisors in Masindi

ZONE NUMBER OF 4.3 Methods and Samnling SUPERVISORS

In-depth, qualitative study was undertaken in Biiso J four villages in Masindi, with an extra fifth serving as a pilot. These four communities Kinyara J were designated "Category A" villages, to Nyantozi 2 distinguish them from the twenty villages

("Category B") where we sought to address Kasenene 1 some of the more quantitative indicators. In Kasongoire I the latter group of villages, the team used rapid assessment procedures to determine Kibwoona 1 whether CDTI had in fact been introduced and whether the CDDs had been performing TOTAL 11 as trained.

Sampling of Category A villages was based on maps and lists of villages which were provided first at the meeting of Independent Monitors in Ouagadougou by APOC, and later by Sight Savers International (SSD in Kampala (attached). Two parishes with endemic communities (Biiso and Nyantonzi) were selected through a simple random procedure from the list provided. Two villages were then selected from each parish after all villages within it had been stratified according to nearness to a health facility.

On the basis of our consultation with the District Onchocerciasis Control Coordinator, communities were classified as "far from health facilities" if they are five or more kilometres from the health facility. Communities classified as "near" are those within 0-4 kilometres from the nearest health facility. Within each stratum, one village was selected by balloting. Through this procedure, we identified Biiso Centre and Waaki (in Biiso Parish), and Katugo II and Rwangara (in Nyantozi Parish). Biiso and Katugo II represent near communities while Waaki and Rwangara represent far communities.

Five category B villages were selected from a list of villages surrounding each of the Category A villages. This procedure gave us a total of twenty Category B villages. Table 4.2 shows the distribution of selected villages by parish.

The CDDs in the four villages visited (as well as in Kibwoona) can be classified as functional or non-functional. In all the Category A villages except Kibwoona, CDDs who were selected before APOC took over the implementation of the onchocerciasis control programme have continued to

APOC Monitoring inUganda - 32 perfbrm in this capacity and they are the ones that can be classified as functional. They distribute the drugs and keep records of treatment. The ones selected after APOC took over programme implementation have not been playing an active role in drug distribution and hence are classified as non-functional.

Table 4.2 Distribution of Sampled Villages in Masindi District

PARISH CATEGORY A CATEGORY B

Biiso Biiso Centre (near) Itutwe Katumba Kihuha Nyamasoga A Nyamasoga B

Waal

Nyantozi Katungo ll (near) Kababito Kabale Katanga Katugo I Nyantozi Centre

Rwangara (far) Binenza Kimanya II Rwentale I Rwentale II Siiba

Kibwuona Kibwoona nla (used as pilot, but yielded valuable information)

None of the non-functional CDDs was available for interview, a situation which reinforces their non-functionality. The four functioning CDDs (one in each village) were interviewed. Kibwoona presents a promising case of CDTI activities, possibly because intervention and distribution commenced in 1996. The effectiveness with which CDTI seems to have taken root in Kibwoona could be related to the recency of distribution there, and the fact that the earlier community-based

APOC Monitoring in Uganda - 33 (rather than commuruty-directed) onentation had not developed. It is only in Kibwoona, for example, that the community itself actually selected its CDDs. In the other communities visited, the health ofiicials, often in collaboration with village leaders, had selected the CDDs with the result that, in 2 out of the 4 Category A villages visited (i.e. Waaki and Rwangara), the CDD and the LCI Chairman are one and the same person. The connection between drug distribution and politics may not always be in the best interests of a community, especially where total coverage of eligible persons is desired.

Households for coverage surveys were selected through a two-step process. First, because of the dispersed nature of the settlements, we undertook a reconnaissance of each village to determine the locations of the housing units and each village was then divided into two sections. Each section was covered by an assistant. Secondly, within each section, a maximum of eight dwelling units to be visited by an assistant were identified by a process that ensured that no two adjacent dwellings were selected. Within each dwelling unit, only one household was selected. Where more than one household lived in a dwelling unit (which was not common in the villages visited), one was chosen by balloting. Each identified dwelling unit was visited until a total of 85 to 90 persons were recorded. In cases where there were not enough persons in the selected dwellings, the assistant selected other dwelling units. In one of our villages, Rwangara, it was not possible to record more than 58 persons at the end of our visit. We were able to make up for the deficiency in Katungo II where 125 persons were recorded. Household was defined as a group of people who eat from the same pot.

The most important male leader and female leader were interviewed in each village.

Two group discussions, one with adult males and the other with adult females, were held in each village. Six to eight community members were selected from different sections of the village to constitute each group The Assistants or a local guide transcribed and translated the group discussions.

Two households were visited in each Category B Village, and the head or another senior household member was interviewed, primarily to determine whether distribution had taken place

Ilealth Personnel interviewed included the District Onchocerciasis Control Coordinator, Mr. Byruhanga Cosmas, was interviewed. Three other LOCT members were interviewed. At least one health person based in each parish was interviewed.

4.4 Overviao of CDTI Process

a. Approaching the Community

In the endemic communities of Masindi district, the programme for onchocerciasis control was first introduced by Sight Savers International in 1991. The identification and selection of the community-based distributors were facilitated by supervisors at the parish (zonal) level. The outcomes of these selections were then conveyed to the communities. The supervisors and the programme district coordinator were reported to have visited the villages at the initial stages of

APOC Monitoring in Uganda - 34 the programme to give talks on the disease and its treatment with ivermectin. The villagers were enjoined to cooperate with the distributors.

Shortly after the takeover of the programme by APOC, the district coordinator of the onchocerciasis control programme held meetings with the supervisors to discuss changes in prograrnme orientation and implementation strategy. The changes in orientation centred around the idea of community ownership of the programme while the changes in implementation centred around the mode of operation, especially in terms of the role and responsibilities of the community in the distribution of ivermectin. At the meetings, supervisors were asked to work closely with the distributors in order to sensitize their communities towards the new orientation of the onchocerciasis control programme. The communities were also to be mobilized to attend meetings where salient issues would be discussed.

The initial meetings between the coordinator (accompanied by the supervisors) and the community members were arranged by the supervisors in collaboration with the local council I chairmen, who are in many cases the distributors. Information from the distributors, supervisors, village leaders and the district coordinator indicates that meetings were held with the communities early in 1998 to discuss the new orientation of the onchocerciasis control prograrnme (though there was low turn-out in Biiso and Waaki). In Biiso and Waaki, majority of the group discussion participants could not recollect attending meetings where the new orientation of the programme was discussed. Few could recall that such meetings were convened at all.

b. Evidence of IEC

IEC activities are meant to educate the people on the onchocerciasis control programme: its objectives, the partners and the responsibilities of the partners. It was gathered from the group discussion participants that community members were largely sensitized about the programme through informal interaction with the CDDs. This does not mean that there were no organized meetings/channels through which certain information was passed to community members. In Rwangara and Katugo II, for instance, the church was used by the CDDs and supervisors to educate and pass information on the progralnme.

In Biiso Centre, it was reported that the CDD sensitized the community about the new programme when she was distributing the drugs in March 1998. Asked why sensitization and distribution activities were combined, the CDD explained that it has been extremely difficult to arrange meetings in the village. Because the turn-out at such meetings was usually low, a decision was taken to educate members individually or in groups of individuals while distributing. Waaki is another village where it has been difficult to arrange formal meetings.

The difficulty in arranging and sustaining a formal village meeting was reflected in the statement of one of the women participants in a group discussion who said that "when we went for one meeting, they spoke to us in Swahili, a language we do not understand; we left the meeting". The CDD, who is also the Local Council 1 chairman, has provided some education to the members through informal interaction.

APOC Monitoring in Uganda - 35 It must be noted that members of these communities demonstrated high levels of knowledge about the disease: cause, symptoms and treatment. They also demonstrated a clear understanding of who are eligible and ineligible and the side reactions. Knowledge of the management of side effects was low and the communities have not been adequately oriented to perceive the progralnme as their own. They could not understand why height rather than weight is now used to determine dosage. Many participants expressed preference for weight. There are also some misconceptions about the consequences of treating HIV infected individuals with ivermectin.

c. The Distribution Process

! The present onchocerciasis control programme in Masindi district is a transition from previous community based mass distribution programme of Sight Savers International. Distribution began in the villages in 1992 and has been carried out once a year since then. The first distribution throughout Masindi after the take-over of the prograrnme by APOC was in March 1998. Because of the dispersed nature of the settlements as well as their patterns of migration, it took more than a month to complete the distribution. Ivermectin has continued to be distributed free of charge and community members continue to express their satisfaction with the drug. What is lacking thus far is a commitment to the prograrnme that goes beyond an exclusively recipient role to one that expresses a firm willingness and ability to assume greater responsibility for the distribution process.

A major problem which confronted the distribution in March 1998 (that is, after APOC took over the onchocerciasis control prograrnme) was the delay in the delivery of the drug to the district office which consequently led to a two-month delay in the distribution of the drug in the villages. The delay in distribution was noted to result in low coverage. The communities, we were told, were mobilizedto receive the drugs in January 1998 (the off-peak farming season) but distribution did not start until March 1998 (the planting season).

By the time distribution started, many people had been disenchanted and many others had gone out of the village to other places where their economic activities are usually carried out. Others simply refused to take the drug because of the fear that the drug would weaken them and hence would render them incapable of carrying out their economic activities for a few days at such a crucial farming period. Coverage was thus lower than what would have obtained had distribution taken place in January.

Another problem which has persisted for some time is the refusal of some community members to take the drug because of the fear that persons with HIV virus (assumed to be sick) would die if they take the drug. Since many of them are not sure of their infection status, they are scared to take the drugs. A few community members have also complained about the side effects and the distributors were reported to have allayed their fears about these. Furthermore, the change from 6mg tablets to 3mg tablets and the use of height rather than weight for the determination of dosage created some confusion in the communities.

APOC Monitoring in Uganda - 36 4. 5 Level of Involvement

a. Decision Making: lssues and Processes

Although some meetings were reported to have taken place between the communities and programme managers/health personnel (in charge of onchocerciasis control prograrnmes), there was no evidence of significant community involvement in decision making processes before and after the take-over of the onchocerciasis control prograrnme by APOC. It was learnt that before the take-over of the prograrnme by APOC, meetings were usually held to inform the communities of the need to control onchocerciasis. Distributors were usually identified and selected among members of the community by the supervisors and their choices were usually communicated to community members during meetings. Usually the choices were approved by community members. The selected distributors then decided the mode of distribution which was usually based on convenience or the desire to reach many people: central or house-to-house mode of distribution.

The procedure for the selection of distributors and the mode of distribution has not changed much since the take-over of the programme by APOC. In the four villages visited, it was reported that the distributors under Sight Savers prograrnme were presented to community members for approval and they (the community members) were asked only to select additional distributors to assist them.

In Waaki and Rwangara, the CDDs are Local Council I Chairmen and it would have been impossible for the community to disapprove of their selection even if they wanted a change. Unfortunately, the new nominees have not participated fully in the distribution programme in all the villages visited. The mode of distribution was also not discussed at any meeting or as a group As it was during the pre-APOC era, the mode of distribution has continued to be decided by the distributors.

b. Specifi c Contributions

Information gathered from all sources indicates that the communities have not made any significant contribution to the onchocerciasis control programme either before or after the take- over of implementation by APOC. The distributors have not received any support from the community towards their training, the provision of health education to the community, mobilization of the community for distribution, and, transportation for distributors. While the distributors attributed this situation to lack of appreciation of their services, the community members reported that they could not see any reason to contribute to a government programme/worker.

Even though they reported to know that the programme was initially implemented by Sight Savers and now by APOC, the communities still perceive the programme as a government programme which does not require any further support from them. The CDDs are perceived as government/health workers.

APOC Monitoring in Uganda - 37 c. Follow-up Activities after Distribution

There was no evidence of follow-up activities after distribution. Information from different groups of people indicates that the community and the distributors/supervisors/onchocerciasis control coordinator did not hold meetings after distribution to discuss outcomes of distribution, review programme performance or plan changes for the subsequent distribution. Although there were complaints of minor reactions to the drug after each distribution, such complaints were made individually to the distributors.

Asked why there have not been fora for feedback, the health personnel and the distributors reported that such activities were not built into the onchocerciasis control programme, further indication that the CDTI orientation had not effectively been internalized. Discussions of progralnme performance, side effects and modifications in implementation strategy are usually held during quarterly and annual meetings of onchocerciasis control coordinators, supervisors and the implementing agency (Sight Savers).

Moreover, the migratory nature of the population and the usually low turn out at meetings (especially during peak farming seasons) make holding of such meetings almost impossible. The supervisors are general health workers who are involved in other health prograrnmes in the communities and hence do not have the time to organize such feedback meetings. Almost all the supervisors are responsible for mobilizing communities for immunization, treatment of other diseases and general health education (especially the prevention and treatment of STIs, including Hrv/ArDS).

4.6 Communi*t Perceptions, Expectations and Satisfacfion

a. Perceptions of Programme Purpose

In the four villages visited, the general conception is that the onchocerciasis control programme is meant to treat and reduce the burden ofonchocerciasis (kisararu orfararia) in their areas. The programme is thought to be a humanitarian programme meant to help fight onchocerciasis and the free distribution of the drug reinforces the humanitarian conception. Indeed, a male group in Katungo II pointed out that, if the programme were not government-owned or externally controlled, then the distribution could not be free.

The perception of the external ownership of the prograrnme is so strong that many members complied with treatment because they feared that further government support would not be forthcoming if they did not take ivermectin. Community members reported that they were told as far back as 1992 when the programme started that the best way to reduce the incidence of skin and ocular infections in their areas is to take ivermectin tablet. Asked if they were told of other objectives of the programme, they said no. When asked further if they were informed that the community would have to take over the responsibility of distributing the tablets after some years, they reported that the nature of the takeover has not been explicitly explained to them. It was not clear to them why community members are being asked to take over a government programme.

APOC Monitoring in Uganda - 38 b. Expectations

It was clear from the various discussions that the greatest expectation of the community is to have their skin lesions cleared and their eye problems rectified within a short period of time. In order to have a quicker solution to the ocular and non-ocular problems, some members (especially in Biiso Centre) suggested that the tablet should be taken more than once a year - after all, "we have been earlier informed by somebody that the tablet could be taken thrice ayeaf'. Another major expectation is that the tablet will continue to be distributed free of charge and that distribution would take place during off-peak farming season (preferably in January of every year).

In Biiso Centre, the men would want dosage to be determined by weight (as was previously done) and not by height as is presently done. Asked to explain why they preferred weight to height, no reason was given. But during the after-group-discussion chat with some men, it became apparent that some people received lower dosage with the use of height to determine dosage.

c. Local lndicators and their Achievement

As already noted, the communities perceive the objective of the prograrnme to be the treatment of Kisararu. Consequently, all the participants perceived the indicators of success as "clear and smooth skin, " and "improved eye sight/vision. " In response to a question on whether the ivermectin distribution prograrnme has recorded any success so far and how the success can be measured, two women in a group discussion stated: "my skin was so horrible, people feared to come near me, but now it's all cleared;" "I used to see stars or small flies but now I can see clearly."

Many participants showed their bodies with pride to convince the moderator that their skin lesions have cleared. Ivermectin was perceived as a wonder drug, capable of doing many things. The only problem now is that many people felt that they are already cured; hence there is no need for them to continue with treatment. More education is needed on this aspect since many participants did not know how long they should take the drug.

4.7 Oualiry of CDD Training

a. Organization of Training

Training of distributors has always been an important component of the onchocerciasis control prografllme since it started rn 1992 in the various communities. The CDDs reported that they have taken part in a series of training to update their knowledge of the disease and its treatment and improve their skills in ivermectin distribution (especially with respect to the determination of dosage and management of side effects).

Since the takeover of the programme by APOC, each CDD reported to have attended a training. Because of the directive from APOC that NGDOs should handle training activities, the training of CDDs in 1998 was facilitated by Sight Savers. Unlike in previous years when training was organized for a few CDDs at a place very close to their communities, the training in 1998 was

APOC Monitoring in Uganda - 39 organized at a central place for all CDDs in each zone. This arrangement has the implication that some CDDs had to cover considerable distance to reach the training venue and many CDDs were trained at the same time. The training for all CDDs in Biiso zone took place in Biiso Centre and for cDDs in Nyantozi zone, the training took place in Nyantozi centre.

The CDDs reported that during training they were supplied with notebook, pencil, pen, chalk, pictorial form and stick. The method of training was basically lecture combined with demonstration/practical. During demonstration/practical sessions, CDDs were asked to demonstrate, among others, how to measure heights. AII the CDDs reported to have been actively involved in doing things during training and that their opinions were sought by the trainers. They also reported to have worked in groups. Although not all essential materials were supplied to the CDDs during training, the manner in which the training sessions were reported to have been conducted indicate some adherence to APOC training guidelines.

It must, however, be noted that the CDDs reported large group sizes at the training sessions. The CDD for Biiso Centre could not recollect the actual number of participants but indicated that the group was large. The CDDs in Waaki, Katugo II and Rwangara reported group sizes of 30 or more. For a one-day training, these groups were too large especially since a considerable part of the day was spent on travel by those who came from long distances. Majority of the CDDs indicated that the venue of the training was far from home and that they sat in rows. The space was considered adequate for training activities.

b. Content of Training

The CDDs reported that the following topics were covered during the training: cause/etiology of onchocerciasis; symptoms of onchocerciasis; ivermectin as treatment of onchocerciasis; and the supply and distribution of ivermectin. It must be emphasizedthat the CDDs were able to provide most of these answers after probing.

4.8 Oualiy of CDD Record Keeping

a. Evidence of Census and Record Keeping

The CDDs were able to present notebooks in which demographic data and distribution outcomes were recorded. There is a notebook per village and it is kept with the "most senior" CDD. Other CDDs were expected to enter their observations (especially distribution outcomes) on sheets of paper and have them transferred later to the notebook. We noted that this arrangement which may have created a feeling of "inequality" among the CDDs may be one of the reasons why the 'Junior" CDDs have not been participating fully in distribution activities. In addition, the arrangement has created a situation in which many records have not been transferred into the notebook as at the time of the survey. We discovered this when trying to match survey data with the records of the CDDs.

The notebooks were generally neat. In tkee of the villages, there was no evidence that the census data have been updated. In Katugo [I, there was evidence that the census data have been

APOC Monitoring in Uganda - 40 updated. A new register which excludes the names of those declared as dead/migrated in the old register has just been prepared. In addition, the new register has a list of new households. The main deficiency of the new register is that it does not have nirmes of persons born between 1995 and 1998. The data in the register can, therefore, not produce a good estimate of the coverage level.

In Waaki, there were no data on age and sex and data were not recorded by household for a significant proportion of the population. It was thus difficult for us to match survey data with the records of the CDD. Not only that, it was impossible to verify the eligibility of those who were reported to have been treated on the basis of age. In Biiso Centre, the register contains information on narne, age, number of tablets given and reason for not receiving treatment but not on sex. Information on name, age, sex, number of tablets given and reasons for not receiving treatment was available in Rwangara. However, the register showed that under-five children were under-reported.

b. Knowledge of Census and Record Keeping

The CDDs'knowledge of census and record keeping was determined by asking them to explain the different entries in the notebook/register. Each CDD interviewed was able to provide an adequate explanation of the different entries and the rationale for having the different types of information. On census data, the CDDs provided detailed description of the steps involved in collecting information on household members. They noted that the census data are needed to determine the number of people who would be treated. In Biiso Centre, Rwangara and Katungo II, the CDDs reported that information on age was needed to determine eligibility as people under the age of five are not supposed to be treated. As earlier indicated, information on age and sex was not available in Waaki, and in Biiso Centre, information on sex was missing. In Katungo II, where data on age and sex were available, the CDD was not responsible for the collection of the initial data. The register was handed over to him about two years ago when the foimer CDD left.

On outcomes of distribution, the CDDs were able to explain the different entries. According to them: figures 1 to 4 stand for the number of 3mg ivermectin tablet given to a person; A stands for Absent, implying that the individual was away from the community at the time of distribution; M stands for migration (i.e the individual has left the community); S stands for "Sick" (the individual was ill at the time of distribution); P stands for pregnant; C stands for child (that is, an individual was aged below 5 years at the time of distribution);B stands for breastfeeding (that is, the person was breastfeeding an infant aged one week or less at the time of distribution); and D stands for death (that is the individual was dead between the penultimate and the last distributions). Those who.receive the tablet late could, however, not be determined from the CDD records. The CDDs reported that they have started treating pregnant women as a result of recent directives to do so.

c. Accuracy of Records

In all the villages visited, treatment registers were examined to determine accuracy of records. It was clear from the entries that the CDDs understand the distribution outcomes and how to enter them. However, the usefulness of the records of the CDDs to estimate coverage level and

APOC Monitoring in Uganda - 4l monitor prograrnme perfbrmance over time is limited by several deficiencies. For instance, six months after the last distribution was supposed to have taken place, data on distribution outcomes are grossly incomplete in Biiso Centre, Waaki and Katugo II.' There are several names on the register against which no distribution outcomes were recorded and this is true for all the years in the register.

It was discovered from the matching of the household survey data with the records of the CDDs that some of the individuals against whose names there were no distribution outcomes in 1998 had actually received treatment; unfortunately, data on their treatment were not entered into the register. In Biiso Centre, the CDD reported that the supervisor gave the tablet to some I community members when she was ill and records of those people have not been entered into the register.

In addition to missing data on distribution outcomes, there are inconsistencies in the distribution outcomes recorded for individuals who were reported to be 3 or 4 years old in 1996. While some of them were reported to have received treatment in 1998, others were still classified as child. We also picked up about ten cases of those who would have been less than five years of age in 1998 (on the basis of the ages recorded for them two to three years ago) and were reported to have been treated. In response to the question on why such children should be treated, we were told that their ages were initially underestimated and that the ages used for treatment have not been reflected in the register.

Data on age were also missing in the CDD records. In Waaki, ages of all community members were not recorded and in Biiso Centre, data on age were missing for 86 persons. Rwangara and Katugo II also have few cases of missing data on age. It is difiicult, in the absence of age data, to verify whether all individuals who were treated should have been treated. The CDD records do not have data on sex in Biiso Centre and Waaki. Thus, the populations of the two villages cannot be classified by sex.

Another major deficiency observed is the under-reporting of individuals aged 0-4 years. We observed that the register did not have names of persons born, especially after 1996. With the under-reporting of ineligible persons, coverage levels estimated from the records of the CDDs will be biased upwards. The CDD records can also not be used to verify the accuracy of dosage given to individuals since data on height were missing. For instance, it was not possible to explain why an individual reported to be nine years old would receive 2 tablets and another individual reported to be ten years old would receive one, especially when the two individuals came from the same family

We did some verification in Rwangara and Waaki by measuring the height of ten randomly chosen individuals with a view to determining the number of tablets that should have been given. In only one of ten cases was there a difference between the number of tablets that should be given and the number recorded against their names. In Biiso Centre, the CDD was not around to provide the stick and the register (the register was collected at alater date) and in Katugo II, the CDD told us that the measuring stick has been damaged.

APOC Monitoring rnUganda - 42 4.9 Treatment Coverase

a. Coverage within Villages Based on CDD Records

In spite of the deficiencies observed in the CDD records, attempts were made to estimate coverage levels from them. Coverage levels from the CDD records were then compared with coverage levels estimated from survey records. The results are presented in Table 4.3. Coverage levels, estimated from the CDD records are 24.7yo,37 .3o , 560/o and 760/o in Biiso Centre, Waaki, Katugo II and Rwangara, respectively. The differences in coverage rates tend to emanate from two sources: actual differences in the proportions of the populations treated and differences in the level of completeness of the data.

Because the survey results, presented below, also indicate significant variations in coverage levels by community, there is every reason to assume that there are significant variations in the proportions of the populations that were actually treated in March 1998. However, in the case of Waaki, the survey results tend to suggest that coverage level estimated from the CDD records would have been higher had the data on distribution outcomes been more complete. In Rwangara and Katugo II, the coverage levels estimated from the records of the CDDs would have been lower had children 0-4 years of age not been under-reported. We found a positive correlation between the degree of completeness of data on distribution outcomes and coverage level estimated from CDD records.

Table 4.3 Coverage Levels Estimated from Household Survey Data and Records of CDDs

Village House- Sample Number Percent Village Number Percent holds Pop. Reported Treated in Census CDD Treated Sampled Treated sample From Reported by CDD CDD Treated

Waaki 14 96 59 61.5 898 335 37.3

Biiso 13 91 45 49.5 679 168 24.7 Centre

Rwangara 12 58 42 72.4 42s 323 76.0

Katugo ll 19 125 67 53.6 450 252 56.0

Total 58 370 213 57.6 2452 1 098 44.8

b. Coverage Within Villages Based on Survey

The household survey data yield coverage rates of 49. syo, 53 .60 , 6l .5yo and 72.4Yo for Biiso Centre, Katugo II, Waaki and Rwangara, respectively. Table 4.3 shows that coverage levels estimated from the household survey data are significantly higher than those estimated from the records of the CDDs in Waaki and Biiso Centre. Coverage levels estimated from the records of the CDDs in the two villages would have been higher had the data on treatment outcome been

APOC Monitoring in Uganda - 43 more complete. As indicated earlier, a matching of household survey and CDD records revealed that some individuals who claimed to have been treated during the household survey (and who were actually verified to have been treated) had no record oftreatment in the CDD register. This is an important aspect of reporting that must be looked into immediately.

It must also be noted that coverage levels obtained at the district offices for these villages are significantly different from those estimated from the household survey or from CDD records (see Table 4.4). This is unexpected since coverage levels obtained at the district office are expected to be based on the records of the CDDs. It is still not clear how the coverage levels at the district office were calculated.

Table 4.4 Coverage Levels Estimated from Household Survey Data, CDD Records and Records at the District Oflice

Village Coverage Level

Household Survey CDD Records District Office Data

Waaki 61.5 37.4 83.3

Biiso Centre 49.5 24.7 72.6

Rwangara 72.4 76.0 82.0

Katugo ll 53.6 56.0 69.8

c. Coverage of Vi!lages

In addition to the four villages where in-depth studies were undertaken, a rapid assessment of the level of implementation of the CDTI programme was undertaken in 20 other villages through a household survey. The villages are those surrounding the core villages. Data from the household survey show that all the villages have also had one treatment round since APOC took over the programme.

4.10 H ealth Personnel Particip ation

a. Orientation of Personnel

Two categories of health personnel are involved in the CDTI programme at the district level: the coordinator and supervisors. The coordinator of the onchocerciasis control programme is responsible to the District Medical Officer (DMO) on matters related to onchocerciasis control, he coordinates the activities of the supervisors, facilitates the training of supervisors and distributors, ensures that ivermectin tablets get to the zonal (parish) offices and identifies problems in the implementation of onchocerciasis control programme with a view to addressing such problems to the DMO for solution.

APOC Monitoring inUganda - 44 The supervisors, on the other hand ensure that ivermectin tablets get to the CDDs, facilitate the training of CDDs, supervise distribution activities and the records of CDDs and organize, in collaboration with the local council I chairmen, meetings in the communities to discuss issues related to the onchocerciasis control programme. The district coordinator of the onchocerciasis control programme and three supervisors were interviewed in order to determine whether they were oriented towards the CDTI programme.

The district coordinator's involvement with the onchocerciasis control programme predated the take-over of the programme by APOC. He reported to have received a general orientation to CDTI through a series of workshops in which he participated. The first workshop was in Kasese in 1996. The workshop, facilitated by Dr. Uche Amazigo focused on what CDTI means. During the workshop, it was made clear that APOC was in partnership with the Government of Uganda, NGDOs and the community. The results of CDTI studies in Kaduna (Nigeria) and Uganda were used to illustrate the benefit of community designed prograrnmes over externally designed prograrnmes.

According to the results of the studies, community designed prograrnmes appear to be more sustainable. It was also made clear at the workshop that APOC would not meet the salary of the field workers and that after five years, APOC will hand over the management of the programme to the government but drugs would continue to be delivered free of charge. Following the Kasese workshop, there was another one in Enugu, Nigeria in 1997. In Enugu, the CDTI methodology as it applies to different countries was designed and finalized. Shortly after the Enugu workshop, there was another workshop in Mbarara (Uganda) to standardize and harmonize APOC methodology in Uganda. This meeting was attended by the coordinators of the four project districts in Uganda - Masindi, Kasese, Hoima and Kisoro - and the supervisors. Training on standardization of accounting procedures and programme activities was conducted in Kampala shortly after the meeting in Mbarara. There has not been any special training of trainers. Training of supervisors has usually been done by applying APOC's guidelines as contained in the training manual.

Like the coordinator, the supervisors were involved in the supervision of onchocerciasis control activities before APOC took over. They had also received some on-the-job training. With the take over of the programme by APOC, a two-day workshop was held for the supervisors in Hoima on February ll-12,1998. The workshop was reported to have been facilitated by Dr. Peter Okwarre, the coordinator of the onchocerciasis control programme and staffof Sight Savers. The supervisors reported that the important points covered in the workshop include: onchocerciasis as a disease; symptoms and transmission of onchocerciasis; treatment of onchocerciasis with ivermectin; distribution of ivermectin and the role of the community in the distribution programme; determination of dosage; side effects and their management; determination of ineligibles; data collection and updating of registers, supervision of treatment activities and records; and sensitrzation of the community towards the new orientation of the programme. The supervisors were able to recollect the various issues discussed spontaneously.

The supervisors reported that training on how to train the CDDs was part of the training received during the workshop in Hoima. Using sticks, they were trained how to measure heights, and

APOC Monitoring in Uganda - 45 materials such as notebooks, pencils, rulers and pens were provided for practical sessions on record keeping.

b. IEC and Outreach Activities

At the workshop in Hoima, supervisors were instructed to go back to their communities to arr4nge meetings for the discussion of the APOC implementation guidelines with community members. The supervisors, in collaboration with Local Council I Chairmen (village leaders) allanged the meetings. According to the district coordinator, a meeting was usually arranged for two neighbouring villages at a place agreed upon by the leaders of the two villages to minimize expenses and ensure that all villages were covered before distribution started. The coordinator and the supervisors reported that there was low turn-out in some of the meetings. The coordinator was usually informed of the venue and date of meetings.

The coordinator attended about half of the meetings and in the other half, he was represented by the supervisors. The facilitating team was usually introduced by the local council 1 chairman. The discussion of the programme under APOC (especially the role of the community in the distribution prograrnme) was then undertaken using participatory approach.

c. Training and Supervisory Activities

Questions on training and supervisory activities were asked from three groups of people: the CDD, health personnel and the village leader. The CDDs reported that the supervisor (health personnel) pays supervisory visits to them on a regular basis. The supervisors reported that as health workers involved in different health programmes (especially now that the integrated health programme is being implemented), it is mandatory for them to visit the villages (and consequently the CDDs) on a regular basis. The CDDs are visited not only during distribution but also before and after distribution. During such visits, the records of the CDDs are examined and data are collected. The major constraints to supervision are inadequate means of transport (especially since the villages are sometimes far from one another and several bicycles need to be repaired) and lack of incentives.

d. Drug Management

Ivermectin tablets are usually brought to the district health office in Masindi by Sight Savers. From there, they are taken to the zonal health offices by the District Coordinator. Each zonal office has adequate space for the storage of ivermectin. It was reported that there are no constraints to storage since tablets are not stored for long at the zonal health offices; the tablets are usually taken to the communities for distribution immediately they are received to prevent further delays in distribution. The tablets are taken to the villages by the CDDs who are usually invited to do so immediately the tablets are delivered at the zonal health offices. The estimation of the number of tablets required by each village (or district) has been based on the total population of that village (or of the affected villages in the district) When the 6mg tablets were being distributed, the number of tablets required by each village was estimated by the supervisor as the total population of the village multiplied by 1.5. At the district level, the number of tablets

APOC Monitoring in Uganda - 46 required was estimated by the coordinator as the total number of persons in the affected communities multiplied by 1.5. With the introduction of the 3mg tablets, the required number of tablets is estimated as the total number of persons multiplied by 3.

There has been a delay in the delivery of the drug to the district health office since APOC took over the onchocerciasis control programme. The last delivery was expected in December 1997 but did not come until the end of February, 1998. As a result of the delay in drug delivery, distribution within the communities was shifted from January 1998 to March 1998. As previously noted, the shift in distribution time had adverse effects on the proportion of the population that was reached. It is important that APOC, the NOCP and the district coordinators ensure that the drug is delivered on time so that distribution can be done at the time that is most convenient to the community members (usually the off-peak farming season).

4.11 Constraints to CDTI Implementation

a. Constraints in Village Level Organization

Information from various sources suggests that a major problem confronting adequate implementation of CDTI at the village level is lack of orientation of the people to the idea that the prograrnme belongs to them and as such have a role to play in its implementation. It was clear from group discussions that the prograrnme is still being perceived by the people as a government prograrnme in which they have little or no role to play. They have not participated fully in the selection of distributors (some of whom are local council I chairmen) and have not supported them in any way. The CDDs, supervisors and the coordinator reported that turn-outs were usually low in village meetings organized to discuss issues related to CDTI. Unless strategies are designed to fully involve the communities in the CDTI prograrnme with a view to ensuring that they carry out their responsibilities, the CDTI prograrnme may not be sustainable in these communities.

Another major issue which has to be addressed is the timing of distribution. Experience from the last distribution has shown that the planting season is not a good time to distribute. Because of the fear that the drug may weaken them and hence keep them offtheir economic activities for a few days, many people were reported not to have taken the tablet during the last distribution which was undertaken in March (the planting season). It is, therefore, important that delivery and distribution of drugs should be scheduled to take place during the oflpeak farming season. Furthermore, the fear that individuals with HIV (presumed to be sick) will die if they take the drug is another problem confronting the programme. Although the CDDs were reported to have undertaken IEC activities to minimize the effects of this beliet some people are yet to be persuaded to take the drug.

b. Constraints in CDD Performance

Information from the CDDs and other sources indicates that CDDs face some constraints in the process of carrying out their distribution activities. One of the major constraints is the inability to reach several community members during distribution. Several strategies were reported to have

APOC Monitoring rnUganda - 47 been adopted by CDDs to ensure that high percentages of community members get treated. For instance, on the realization that many people might not report for treatment if a central place was selected for distribution, the distributors in Biiso Centre and Rwangara adopted the house-to- house mode of distribution. Yet, significant proportions of the people were not treated during the last distribution because they were not found at home when the CDDs called. This situation, according to the CDDs, is frustrating considering the fact that they usually cover a lot of distance during distribution due to the dispersed nature of the settlements.

Another major constraint is the difficulties encountered in moving from one part of the village to another, especially during distribution. The housing units are so far from one another that each village occupies alarge area of land. The CDDs reported that it has been extremely difficult for them to move from one end of the village to another. Thus, they would like bicycles to be provided in order to reduce the hardships they have been experiencing. Another major concern is the disguised lack of cooperation between the old and new distributors. In all the villages visited, the newly selected CDDs were reported not to have participated effectively in the distribution of ivermectin. Except in Waaki, none of the newly selected CDDs was available for interview.

The difficulty in updating the household records is another constraint facing the implementation of CDTI by the CDDs. The CDDs reported that because the community members are difficult to reach at home, it has been difficult to update their records. New members of households are sometimes not registered and data on those registered are sometimes missing. The demand for incentives, which resulted from the perception of the CDDs that their communities do not appreciate their efforts, is worth looking into. The CDDs reported that the communities have not done anything to support them or the prograrnme.

c. Constraints in District Level Organization

Reports from the district coordinator of onchocerciasis control programme and other health personnel indicate that there are currently no constraints to the implementation of CDTI at the district level. The district office is reported to be well equipped to facilitate the training of supervisors and CDDs, ensure adequate storage of ivermectin and the distribution of drug to the zonal offices. Delays in the delivery of ivermectin to the district office must, however, be avoided to prevent shifts in distribution time at the community level.

d. Constraints in Health Personnel Performance

Two major constraints were mentioned by the supervisors: inadequate transportation means and lack of remuneration for supervisory activities. Because they cover many villages which are sometimes inaccessible by motor vehicle and are far from one another, the supervisors argued that they need at least bicycles to move from one village to another. Some of the bicycles initially provided for them need repairs but because bicycle allowances are not provided by the district, those bicycles could not be repaired. The mobility of the supervisors is thus impeded. There are complaints of lack of remuneration for their supervisory activities. It is believed that the provision of incentives would encourage them to put in more efforts to ensure the success of CDTI.

APOC Monitoring in Uganda - 48 4.12 Prospects for SustainabiliU

Generally, the fundamental misconception of CDTI as a govemment or World Bank prograrnme does not augur well for sustainability in Masindi District. Many community members were of the opinion that the fact that ivermectin was being distributed free was an indication that it was an externally sponsored programme. There is no evidence to show that significant effort has been made to pull the communities away from the pre-APOC orientation to a commuruty-based, as opposed to a commuilty-directed, treatment programme with ivermectin. Details of these findings are outlined below.

a. Evidence of Community Commitment

There is not much evidence of community commitment to take over the distribution of ivermectin, except in its willingness to continue taking the drug. As noted in "Specific Contributions of the Community to the Programme", the community has not made any material or fiscal contributions to either the CDD or the programme of distribution.

b. Evidence of CDD Commitment

In spite of the constraints which they have in the implementation of CDTI, the CDDs reported that they would like to continue as CDDs. "The desire "to serve my village and sub-county;" "It is one way of helping to solve a community problem;" and "The people are already used to me;" are some of the reasons for the desire to continue as CDDs.

c. Evidence of Health Personnel Commitment

Communities reported frequent visits of health personnel to their villages to observe distribution, and provide health education. The supervisors reported that they would like to continue with the supervision of distribution activities.

APOC Monitoring in Uganda - 49 5. RESULTS FROM KISORO DISTRICT

The Monitoring Team that visited Kisoro District consisted of Dr. W.R. Brieger, as Independent Monitor, and)Simon Arumadri as local counterpart. The team was oriented to the programme in the District by Cfuistopher Ruzaza, Entomologicat (Vector Control) Officer and Onchocerciasis Coordinator, Dr. Assay Ndizihiwe, District Medical Officer and George Nduwayo, Health Educator.

5.1History of the Programme

I Kisoro District was a former county under Kabale District and became a district in its own right in 1991. It has an estimated population of 320,000 and a population density of 301 persons per squilre kilometre. The fertility rate of 7.3 is said to be the second highest in the country. The area is said to be poor, with little economic base and revenue generation. There are no tarred roads in the area, and in one of the most endemic parishes, none of the endemic communities are accessible by road. Census updating in the endemic villages showed that nine of the 31 endemic communities had experienced a decrease between 1997 and 1998, and this was attributed to out- migration to find better farm land due to poverty and population pressure. Overall, the population in the endemic villages increased by 8.4% during that period. Only three of the five endemic parishes have local government health units.

The history of onchocerciasis control activities in Kisoro dates from 1992. The current Onchocerciasis Coordinator, a trained entomological assistant, has been with the programme from the inception. REMO had been conducted between 1993-95 in areas that geographically were expected to be endemic, and hence, the current 31 communities under treatment were identified in five parishes within four sub-counties as seen in the Table 5 I that follows. These are all located in the northern part of the district. In 1997, at the intended start of APOC, REMO in a sample of villages throughout the district was again conducted and confirmed the original selection of villages as being appropriate for community level treatment.

Table 5.1 Location of Endemic Villages in Kisoro by Parish

Sub-County Endemic Endemic Presence of Parish Villages Health Unit Nyabwigishenya Nteko l0 No

Nyarutembe 6 No

Kirundo Rubuguri 10 Yes

Busanza Gtovu 4 Yes

Bukimbiri Iremera I Yes TOTAL 3l )

APOC Monitoring in Uganda - 50 The programme has integrated with efforts by local NGDOs and donor agencies to train community based health workers (CBHWs). The Catholic Mission Hospital at Mutolere near Kisoro town, in particular, trained CBHWs to undertake health education, community mobilisation, and immunisation services in the endemic communities. The LOCT reported that they had liaised with Mutolere Hospital and used the 70 CBHWs that had been trained in the endemic communities as a foundation on which to build the CDD aspect of the prograrnme. Thus CBHWs make up more than half of the I l5 CDDs curently working. The clinical officer in- charge of the health Unit in Kashija, which oversees the work of CDDs in two parishes (Rubuguri and Nteku) thought that the number of CBHWs in the area was much smaller, but could not give an estimate. He also explained that CARE has a Community Reproductive Health Project (CREI{P) that covers four parishes, three of which are endemic. They have trained approximately 24 Community Reproductive Health Workers, a few of whom are also CDDs. Regardless of the exact numbers involved, it is clear that some integration of community based programming has occurred and that the potential for greater integration of PHC activities is possible.

The 1998 Activity Workplan for Kisoro District, obtained from GRBP, is outlined below

Month January February March April

Activity Training Health Education, Distribution Distribution Skin Snipping

5.2 Seketion of Studv Communifies

Kisoro District has 14 Sub-Counties, of which four have endemic villages, as seen in the previous Table. The team also learned that only rune (29%) of villages were situated near (within 5 km) of a health facility. Twelve (38.7%) of villages were not situated on or near a motorable road. In fact, all endemic villages in Nyarutembe Parish were located far from roads. Finally, the 1998 distribution data showed that eight villages did not achieve the desired 65% population coverage rate. Coverage ranged from 49 .8Yo to 85 .3%o with a mean of 72 3Yo and a mode of 7 5 .8Yo.

From the available data (see Annex 2), a sampling frame was constructed that looked at both proximity of a health facility and the two extremes of coverage rates as seen in the Table 5 2 Of the six villages with the lowest coverage rates, three were located near health facilities and three were far. Among the six villages with the highest coverage rates, only one was located near a health facility. One village near and one village far from a health facility in each coverage level was selected by balloting for detailed Study (Category A villages). Obviously, there was only one choice for a near health facility village in the high coverage group. It should be noted that neither proximity to a health facility (69% near,73oh far, p : 0.31) nor nearness to a motorable road (7lo/o near,75o/o far, p : 0.31), was associated with the level of 1998 population coverage.

Definition of community was of concern to the team. The Onchocerciasis Coordinator explained that traditionally a community was defined as the hill belonging to the descendants of a particular grandfather. During the colonial era, effort was made to produce administratively convenient units, and so peoples were grouped by similarities and population to produce current village

APOC Monitoring in Uganda - 51 definitions. Mllages are scattered settlements of houses and farms/gardens in areas ranging from 3-4 km in diameter. There may be no obvious physical centre of a village, but there is usually a meeting place known to all village members.

Table 5.2 Sampling Frame Based on Proximity to Health Facility and Coverage

Proximity to Coverage (% ) Obtained from GRBP Health Facility Low High

Near Kashija (54.7) y'lltgabiro (80.9) Kafiga (s9.2%) y'Bunyanya(59.4%

Far y'Kikobero (49.8) Kanyamahene (85.3) Muko (s6.4) y'Suma (85.1) Kibyiyoni/Busanani Bikokora (83.6) (s6 8) Shunga (82.3) Nteko (80.e)

Two Interviewers were recruited from the local government administration, a secretary and an office assistant. The Onchocerciasis Coordinator provided great assistance to the team in helping the two interviewers review and translate the instruments into the Rufumbira dialect. He provided the local name for onchocerciasis, ubukamba, or "rough skin body," as well as provided appropriate terminology for CDTI, CDD and health personnel. One challenge to the interviewers was the need to distinguish between onchocerciasis programme activities prior to CDTI from the current activities, which actually got underway only with the 1998 distribution.

Daily field activities are summarised in the Table 5.3. It should be said that the geographical factors played a major inhibiting role. As reported, no roads in the District are paved. Suma village could only be reached on foot, a trek of one and a half hours, following a drive of one hour and 15 minutes. Kikobero Village was a 2-hour drive on a curving mountainous road. The study period was also in the midst of the rainy season, and heavy rains were experienced every afternoon. The villages themselves are scattered settlements spanning3-4 km with distances between houses between 100-200 metres.

On the first day's visit, interviews did not finish until 15:00, at which time the rains began, making it impossible to conduct the household surveys. The second day, when the possibility of conducting the household survey first was considered, it was learned that not everyone would be home at that time, especially school children. Again, after the interviews were complete, the rains set in. It was decided therefore, not to make further attempts at the household suryeys, and as it turned out, it rained every succeeding afternoon. As discussed by the group of Monitors in Ouagadougou, the household coverage survey was actually a separate study, and that priority would be given to learning about the process and potential sustainability of CDTI. Necessity made this a reality in Kisoro.

APOC Monitoring in Uganda - 52 Finally, six Category B villages were visited. More villages could not be visited due to problems of constant afternoon rain, poor road conditions, and the need to return to Kisoro before dark. Many of the villages were not on roads, so the option of stopping by on the way to or from a Category A village was not feasible for nearly one-third of communities. Three were visited on 27109198 on the way to Higabiro. The afternoon before the bulk of villages were to be visited, a landslide closed the main road. This left three accessible villages in Gtovu Parish to visit, although substantial walking was involved in reaching all three. The names of these villages and the number interviewed are listed below.

Rushaga (l interview) Gakenke (2) Kanyamahene (l) Kinanira (2) Nyamasinda (2) Nyarurambi (2)

Table 5.3 Summary of Field Activities in Categora A Villages

Instrument Villages

Kikobero Suma Bunyanya Higabiro

Date 24109198 2s109198 26109198 27109198

Village Leader 1 male I male l male l male Interview I female I female I female I female

CDD Interview 2 2 I 2

Group I full male 1 full male I full male I partial male Discussion I partial female I full female I full female I full female

5.3 Overviev of CDTI Process

The CDTI process in Kisoro must be viewed in the context that onchocerciasis control using mass distribution of ivermectin started in 1993. Therefore, CDTI is not starting fresh, but existing and familiar activities and processes had to be adapted and modified to accommodate CDTI. This 6- year history of activity in the community also made it difficult at times for people to distinguish from the original and the new or improved programme during interviews.

a. Approaching the Community

Since village meetings are common, in some places once a month and in others quarterly, it was hard to distinguish a particular separate meeting where CDTI had been introduced. People recalled many meetings where the relevant issues were discussed over the past years, and were knowledgeable of the community's role in CDTI. They also recalled frequent health staffvisits to address them on the issues. [n general one could say that the community has been kept informed and involved in the ivermectin distribution process for some years now, so that they themselves

APOC Monitoring in Uganda - 53 may not be clearly aware when a specific change in approach occurred. In essence, the increasing roles and responsibilities of the community have been evolving.

The village leaders recalled that the Oncho Coordinator had visited their village to introduce the idea of ivermectin distribution. Some recalled dates as early as 1993. Others noted that several visits had been made since then. The procedure was to approach the Local Council I (village level) leaders and request a meeting. All but one women leader recalled that a meeting had taken place. Issues raised during the meeting as recalled by the respondents were the causes and effects of onchocerciasis, who was supposed to take the drug, and compensation for the distributor(s).

One CDD, who was a teacher in Suma Village, described the introductory process most succinctly. Even though he was referring to the beginning of mass distribution, he narrated a process that was very much in line with CDTI:

Mr. Ruzqza, who is in charge of the Oncho Programme introduced us to the programme. The first time he came was in the early 1990s. He first met with the Local Council Executive, after which, the whole community was called. He asked the community to gather together. He talked of how the disease is spread and how it affects people. More than 100 people attended, both men andwomen, but children came also. The meeting decided to elect distributors to help them get the drug.

All l0 Category B respondents recalled that a community meeting was held to introduce the onchocerciasis programme to the community. Most said that the whole community was in attendance, men, women and children. One said only men were present, and another said only he LCl members and health staffmet.

In discussion groups, all community members admitted that they had been invited to meetings on CDTI. This was said to have occurred twice ayear in Higabiro, once ayear in Suma, and monttrly in Bunyanya. In addition, women in Bunyanya said they met regularly to discuss a variety of health and development issues, including how to improve income, agricultural production, and improving communication, in addition to CDTI concerns.

b. Evidence of IEC

The village leaders noted that during the introductory meetings, the health workers lectured about the disease as well as showed pictures and a flipchart. CDDs also described the initial meetings as being educational in large part. The CDDs showed the team the flipcharts they had received for use in the community.

The CDDs described their own efforts to encourage people to come out for the Mectizan@. Different approaches included frequent meetings, announcements at churches and schools, notices posted at central places, using LCI members to spread the word, putting up notices at clubs and bars, and blowing of whistles.

APOC Monitoring in Uganda - 54 People in category B villages recalled the following information being provided during initial community meetings:

Mectizan@ should be taken annually (5) Pregnant women should not take ivermectin (5) Very ill people should not take ivermectin (5) How long (-arry years) the drug should be taken (4) Mectizan@ is free (3) The community will gain - e.g. rough skin reduced (3) CDDs are not paid, only community can reward them (3) The community should select its own CDDs (2) No idea (l)

Discussion group members recalled a variety of ideas that were presented and discussed at meetings about CDTI. These included how to assist the CDD, mode of treatment for oncho, steps to take concerning those who refuse treatment, teaching people about the disease, whether Congolese would be eligible for treatment, that the government aims at controlling the disease by treating them with the onchocerciasis drug, and that the prograrnme looks after their health.

c. The Distribution Process

Leaders recalled the history of distribution from 1993. A few noted that turnout was low at first, but has improved over the years. As one female leader noted, "Distribution was okay because majority got the drug." A common response was that, "Everyone was happy because hookworms went off They are still happy."

Some negative side effects were observed, though most felt fine after receiving the drug. These included itching, diarrhoea and swelling. Those affected were "advised to go to the health unit," which could be a 3-hour walk, as the leaders reported that there were no drug kits in the village A home treatment mentioned was drinking Yzlitre of boiled water. Leaders commented that in subsequent years few or no side effects have been seen.

Most leaders said the distribution went very well. Problems included rain and lack of lunch for distributors.

Distributions took place in central areas, a ridge that is associated with one of the village ancestors, a trading centre, a community building,. As described below, there are community census/treatment books. It was learned during group discussions that when everyone was assembled, the CDDs would call out family names from the register for administration of the drugs.

The Oncho Coordinator had written his own comments about the March-April 1998 distribution on the District Summary Form. He noted that people refused to take the drug in nine villages, "Saying they were not sick." In l0 villages some did not take the drug because they did not want to donate Ush 100/: per household toward the work of the CDD. Problems of general sickness

APOC Monitoring in Uganda - 55 were reported in five villages, affecting 98 people. [n l0 other villages, 306 people did not take the drug because they were sick with malaria. One assumes that if the drug were really left in the village for two weeks as specified, these sick people could have had a chance to take it after they recovered. "Possible stubbornness" was noted as a reason why people refused the drug in three villages.

All CDDs agreed that Mectizan@ was distributed for free, in contrast to feelings in some villages as described herein. They could recall that distribution has been going on since 1993. One CDD in Suma said that a little over half of the people turned up the first time, and that this number has been increasing annually. A similar response was obtained in Higabiro.

In contrast at Kikobero, a CDD observed that the turn out has decreased over the years, "Because the Chairman (LCl) and other leaders asked the community to contribute Ush 100/: to provide lunch for the distributors. The Ush 100/: as lunch allowance for the distributors has discouraged some people from coming for the drugs. Secondly, they were told that there were no drugs for treating side effects." Concerning the allowances, this CDD suggested, "If only CDDs could be helped by the government." He also linked the reluctance of some people to participate with the time in the beginning of the programme when skin snips were done. "People did not want their flesh to be cut!"

CDDs walk to the "nearest" health unit to collect the drugs and start the distribution on the day they return or the following day, depending on how far the village is to the facility. They return the remainder to the health facility. They noted problems with this system including walking through heavy rains, no local transport system, and no lunch allowance for their troubles. One said that on one occasion they were not given enough drugs and had to walk back to the health unit for more. The Oncho Coordinator explained that the CDDs are not involved in estimating the number of drugs needed.

CDDs reported that distribution was central place and that days selected were usually weekends. House-to-house was seen as infeasible considering the long distances involved, and weekends were picked to ensure more people would be free to come for the drug. In light of lack of allowances, it is no wonder that CDDs would favour a central point instead of trekking for miles around the village.

In Category B villages, seven of 10 respondents said that their ivermectin was free. Three reported that there was a Ush 100/: charge per family. Al said that distribution took place at a central point.

Discussion group members were aware of the process by which ivermectin reaches the village. They noted that first, health staffbring ivermectin to the nearest health unit. Hen the CDDs and/or LC1 Chairmen pick up the drug from the health unit. Community members then assemble in a central place. Most said the process is well organised, but older men in Suma said that they should be receiving more tablets because of their age.

APOC Monitoring in Uganda - 56 d. Working with CDDs

The Onchocerciasis Coordinator explained that originally, 6 CDDs had been recruited and trained per village, but many of these dropped out in the early years. The same core of 115 CDDs is said to be active now for the past two years, requiring only refresher training in line with the CDTI approach. No evidence of such large recruitment was found in village interviews.

The selection of CDDs is another example of the evolution between the old and new approaches. The Oncho coordinator said that originally up to six people were selected from each village for training to support the programme and that eventually about three per village were found to be serious about the programme. The programme itself actually provided these original distributors some allowance during the first distribution (apparently contrary to recommendations from GRBP). GRBP subsequently forbid the Coordinator from offering allowances to the CDDs.

Under CDTI, the villagers are expected to handle appropriate compensation or rewards for the CDDs. The Oncho Coordinator said he suggested several options ranging from providing lunch on distribution days, giving cash in lieu of lunch, helping work on the persons farm and relieving the CDD of some communal responsibilities, among others. All villages visited by the team apparently opted for the donation of Ush 100/: per household. The GRBP representative suspects that in many cases CDDs and LCI Chairmen colluded in pressuring the communities into this option, and sees it as a stumbling block to full coverage if the communities did not freely make this decision.

The villagers themselves clearly recall that those currently serving as CDDs were elected in the way that Local Councils at the village level are elected - by lining up behind candidates. In most cases it appears that the people who started the work in 1993 have continued to serve as distributors, partly because people were familiar with them and were relatively satisfied with their performance.

All eight village leaders reported that the CDDs performed well. Some noted how the CDDs divided up the workload, e.g. one measuring dosage, one giving the drug and another recording. One person recalled that the CDD gave health education. One woman leader said, "He performed well because he first asks how one is feeling." Another observed that, "The CDD performs well, but is working for nothing." Other comments included, "They worked very well; they did not spoil the drug." "They get the drug at the time of need."

All but one village leader reported that the CDDs were elected. One woman leader said the CDD was appointed by the health worker. Thus, there were inconsistent perceptions within villages. The election system was reported to be the same as used to elect Local Council members, that is lining up behind candidates of choice. Leaders could not clarify if this process was used from 1993, or if it occurred at a later time after the CDDs had started work, i.e. reconfirming them in their positions. None reported to have changed their CDDs, so one might assume that most of the present CDDs have been working since the programme started. lt is interesting to note that all four of the male village leaders were also CDDs. This might be an

APOC Monitoring in Uganda - 57 indicator of the importance that the community attaches to the prograrnme. As a matter of convenience, it was necessary to interview three of these in both of their capacities.

CDD selection in Category B villages was reported to be by the whole community at a meeting by six of the ten respondents. One said the village chief (LCl chairman) chose the CDD. Three did not know how the person(s) were selected. As with Category A villages, perceptions of how the CDDs were selected were not consistent within villages. Only two said that they personally had any say in the selection process. Nine thought that their CDD had performed very wel[, while one rated the CDD's performance as poor.

5.4 Level of Communi$t Involvement

Four major decisions are placed on the community in starting CDTI, choosing CDDs, selecting dates for distribution, choosing a method for giving out the drugs and deciding how the drugs will be collected from the health unit. Following up on these initial decisions, specific community contributions are needed to make the distribution process go smoothly, such as assisting in mobilisation, providing encouragement for the CDDs, and giving logistical support for the exercise. Finally the involved community needs to meet after distribution and take stock of what was accomplished and what could be done better in the future.

a. Decision Making: lssues and Processes

As noted above, all but one community leader said that the villagers themselves elected their CDDs. There were a variety of responses about how the date for distribution was set, with no two leaders in the same village giving the same answer. Three leaders said the village decided, three said it was the health workers, while two said the village chairman decided. The eight leaders were unanimous in saying that the community itself decided on the distribution system, which was central place in all four communities.

Decision making concerning CDD selection in Category B villages was described above. Only four of 10 Category B respondents said that their date for distribution was decided by a whole village meeting. Two said the LCI Chairman decided. One each said the decision was made by the health staffor by the CDD. Two did not know how the date was decided. Nine said that the location of the distribution point was decided at a village meeting. Even though most said the village as a whole decided, eight said they personally had no role in these decisions.

Discussion groups reported that the following decisions were made at village meetings

selection of CDDs How to collect ivermectin from the health unit, who should collect how to deal with people who did not turn up for the drug criteria for CDD: should be CBHW, LCI Chairman, etc mode of distribution - central places chosen

Groups mentioned that concerning the dates of distribution, health personnel usually decided the

APOC Monitoring in Uganda - 58 date and then informed the community accordingly. Concerning dates, it would appear that there were actually two levels of decision making Programme staffdecided on broad parameters such as the months of March and April. Possibly within that time frame, the community could specify when they were ready. CDDs, leaders and others had commented that they did not like the rainy season, and unfortunately, the time that ivermectin was available in Kisoro for 1998, fell during rainy months. In future, the Oncho Coordinator said he would like to aim for January or February to avoid these rains.

b. Specifi c Contributions

One leader said that the community made no contribution to the distribution process, while a second said the community "did nothing specific." Five noted that the community agreed to pay the CDDs Ush 100, and one person said the community helped in mobilisation.

Although the CDDs reported that the community as a whole was involved in the major decisions about the distribution process through community meetings, subsequent contributions by the community appear to have been few. One CDD said that there were "No contributions from the community." Health education was reportedly done by health stafi CDDs and LCI leaders, especially LCI Chairmen, who in many cases were also CDDs. Little or no material support from the community was reported by the CDDs. Only one said that some villagers bring water in jerrycans. A few talked about the Ush 100/: that some families contributed for CDD lunch allowance.

Mobilisation was reported to be done only by the CDDs and the LCI members. There was really no issue of contributing toward transportation to collect drugs, because walking was the only option available to most villages. As one CDD noted, the main community contribution was "accepting what I am doing."

Discussion Groups did not identifu many community contributions to the process. Most groups said that they provided lunch to the CDDs during distribution or otherwise paid ,rn ,99/: per household. Note that this contrasts to the CDDs' own reports. Apparently there is some community role in supervision and mobilisation, but this is mainly handled by LCI members.

c. Follow-up Activities after Distribution

Six of the leaders said that they recalled community meetings held after the distribution. Four said they discussed outcomes such as side effects and turnout, three said CDD performance was discussed, while one said the community discussed what to do next time. One noted that, "We told the CDD to buy drugs for swelling of the face." Two leaders said that "Nothing was done" after the distribution.

The CDDs did not corroborate the reports of the village leaders, and reported little follow-up activity by the community. One said, "The community simply gets the drugs and goes away. No steps are taken to follow up whatever happened." Another replied that, "The CDD only takes the record and the remaining drugs to the health centre. No actions are taken by the community."

APOC Monitoring in Uganda - 59 Similarly, a third CDD said that, "No follow-up. They just come for the drugs and go away. They only come back for the next distribution or when called."

In contrast, a CDD at Suma reported that, "There was a meeting. They talked about those who don't come for the medicine. They called those and asked why, to explain, and they promised to be ready next time. He talked about the distributers, saying that the CDDs get paid by the organisers. Although we tell them this is not so and request money for lunch, some agree but others think we get a salary."

5.5 Communi?t Perc eptions, Exp ectatio ns and S atisfactio n

a. Perceptions and Expectations of Programme Purpose

All groups knew that the purpose of the programme was to treat them fully or make them recover from onchocerciasis.

A major expectation centred around who should support the work of the CDD. In Kikobero villagers had apparently agreed on one of the alternatives suggested by the LOCT for supporting the CDDs, that of each family giving Ush 100/-. Several people complained of this, though these were mostly older people, as younger men said that the amount posed no problem. Still this fee was seen as a deterrent to participation by some, and Kikobero was a village with low coverage. In Suma, the idea of giving Ush 100 per household had been presented too. Most did not comply, but this did not stop the CDDs from giving ivermectin, as witnessed in the high coverage rate.

The CDDs explained that the villagers believed that the prograrnme was paying the CDDs an allowance, and therefore they did not need to assist, not even by providing lunch on the main distribution day. Ironically, during the first distribution in 1993, distributors, who were more of assistants in the mass distribution process, were given an allowance of between Ush 2-3,000. Even at the last refresher course (December 1997), CDDs were given a Ush 1000 allowance by the programme to cover the expenses then incurred in coming to the training. These are very minor (Ush 1260 : US$ 1), but may be enough to give the villagers the idea that the CDDs were being paid by the progralnme.

Another concern was the lack of drugs to treat side effects and other diseases. No villages had drug kits. One CDD explained that although people are happy to receive drugs for onchocerciasis, but they have "even asked help against malaria, which has started killing many people."

The Coordinator explained that PHC had not been well developed in the District, and this was confirmed by the District Medical Officer. Even the CBHWs trained by the Catholic Mission were geared to preventive work and not treatment. In group discussions, villagers noted that while side effects from ivermectin were rare, they would still prefer to have some drugs available in the village to avoid long treks to a health facility. The villagers in Suma had even constructed a meeting house in 1997, which they had named "Suma Ambulance House," with the hopes that the government would establish a health post there. Their request is still being considered.

APOC Monitoring in Uganda - 60 In discussion groups, most groups said that communities expect the programme to continue for a long time (several years). While they expected everyone to be treated freely, they noted that some CDDs refuse treatment to families that do not contribute Ush 100/:. They noted that although there were fewer cases of side effects now, for those few instances of dizziness, swelling and diarhoea, they expected appropriate treatment in the village. They also expected the programme to address some other health issues such as children's diet.

b. Local !ndicators of Success

Indicators of programme success were obtained from the group discussions. Some responses related directly to current activities, while others concerned longer term health development in the community, i.e. development of a PHC system. Among the project specific indicators that have been or are being achieved, people mentioned -

a everyone is getting treated a skin rashes have disappeared a other diseases have been reduced people are in good health ivermectin keeps coming a recovery from oncho/oncho is being reduced effort is being made to reach those not responding to the programme a able to distribute ourselves a people are passing out worms

Other hopes for success with the prograrnme itself include

a if drugs for side effects could be provided in the village a if allowances were paid to the CDDs if the drug were received twice ayear

The longer term indicators of concern were -

a if medicines can be placed in the village for other diseases like malaria a if an ambulance service can be provided for the villages a improvement in village sanitation a alleviation of poverty if a clinic is set up nearby a if regular transportation and communication were established

5.6 Ouali*t of CDD Training

a. Organization of Training

As described previously, since CDTI was built on an existing system, CDDs recalled a variety of past training activities. They were able to distinguish that refresher training did occur prior to the

APOC Monitoring in Uganda - 6l 1998 distribution where"real" CDTI was introduced for the first time. Training meetings were held in clusters of villages so that the venue was convenient. The usual training group consisted of 10-15 people. Apparently other interested persons were allowed to attend.

Specifically, the Oncho Coordinator reported that the training leading up to the 1998 exercise took the form of three one-day meetings, spread over three months, October-December 1997. He said that the primary responsibility of these workshops was handled by the supervisory teams for each arealparish, who themselves had attended a training of trainers meeting at the District level.

The CDDs commented that they had been to many training programmes over the years. They were asked to recall the most recent round (October-December 1997). They all remembered having received exercise books, pencils and a copy of the onchocerciasis flipchart. None forgot to mention that they received lunch. Some also mentioned receiving a cash allowance.

The respondents found the questions on training methods and approaches difficult to answer (Dlb & c), and either agreed to every option (though some conflicted) or did not respond at all. Also, it was obvious that their recall included past sessions, as some said training included 12-15 trainees spending 2-3 days (i.e. the more recent sessions), while others mentioned 30-40 trainees spending up to one week. Most said that training took place near home at a health unit or school, while one said it took place in Kisoro Town. Some recalled that seating arrangement was in rows, while others (even CDDs from the same village) said the set up of seats was in a semi- circle. All thought the space was adequate.

b. Content of Training

The most common area of content recalled by the CDDs was aspects of the disease - cause, symptoms, general treatment and vectors. It took much probing and prompting to get any response about prograrnme issues such as timing, dosage determination, and eligibility. Eventually most recalled facts such as treatment is annual and under 5s should be excluded.

Overall it appears that this section of the CDD interview instrument is not a very good one and was to obtain information on the quality of training.

5.7 Quali$t of CDD Record Keeping

a. Evidence of Census and Record Keeping

A valuable component of the early (pre-APOC) programme that is in use today is the village register. These registers are kept in both the village and a nearby health unit. At the village level the elected chief, also known as the Local Council I Chairman, is responsible, although he may delegate a village health worker to keep the actual book. Each household has a page in the register. Initially in 1993, not all households cooperated in developing the register, and estimates were made to compensate. By now all are said to be willing to provide information, and so, regular updating is done.

APOC Monitoring inUganda - 62 The record keeping system in Kisoro District combined census and treatment registers. Two registers were formed for each village, with one kept at the nearest health facility, and the other in the village. Both registers were brought together during the treatment exercise and updated simultaneously. Summary sheets were not kept at the village level, nor were records of drugs received, dispensed, or returned. The process of estimating need for Mectizan@ was conducted centrally by the LOCT.

One page in each register was devoted to each household. Pages were added for newly formed families, and note was made when whole families migrated to another District or even to Congo (former Zure). Demographic data on the register included name, sex, and age. Columns were ruled for number of tablets received for 1996-1999. Persons not receiving tablets were marked as follows: C : child ( 5 years, P : pregnant woman, V: visitor in the house. Note was also made when an individual member died, married and left the house, or moved out of the house/area. The health unit's copy of the register was returned with the remaining ivermectin at the end of the two-week treatment period.

Overall the registers were in fairly good condition considering they had been in use for three years. The handwriting was neat and legible. It was observed that the CDDs often divided up their tasks with one being responsible for the register. That person kept the register safely in a nylon bag. The only exception to the system of keeping one register in the village and one at the health unit was Higabiro, where both registers were at the health unit, located within a 10 minute walk from the village.

b. Knowledge and Opinions of Census and Record Keeping

Although all CDDs were asked about record keeping procedures, it was learned that usually only one of the two or three CDDs in a village was responsible for keeping the register. All CDDs agreed that they were keeping the records well. Four said they had no problems with the records. Others raised the following concerns:

fear of thieves if the house is burnt (grass roof), records will be destroyed a lack of cupboards - some records may be destroyed a lack of financial help for keeping records

c. Accuracy of Records

It was possible to do comparison of record entries on dosage with a sample of recipients in one case only. All five, as measured, matched the dose recorded in the book. In two villages, marks on a wall were used to measure height for dosage, and these had either worn offor were plastered. In the fourth village, the CDD forgot his stick some distance away from the interview site.

A l0% sample of entries in both village and health unit registers was compared for Suma. Twelve of 15 entries corresponded. In all cases the number of persons receiving treatment was the same

APOC Monitoring in Uganda - 63 All three discrepancies involved the designation of children < 5 years. It was found that different systems for recording the ages of children < I year may have accounted for the problem. For example, the figures 08,8112, and -8 were all used to designate a child who was 8 months old. Consistency is therefore needed. Fortunately, with the present use of total census as a denominator for coverage, exact age recording will not affect coverage estimates. Still, it would be good to list < 5s properly to avoid wrong treatments.

Two apparent cases of treating 3-year old children were seen in the Suma register and nine in Higabiro. In the Higabiro register there were also several cases of age and sex not being recorded A major concern with the recording of treatment in all registers was the numerous blank spaces. In some cases it was simply the lack of insertion of "C" for a < 5 year child not treated. It would be most helpful for ensuring accuracy and follow-up if other codes could be used, e.g. A: absent throughout, R: refused treatment.

The registers in Kikobero, Suma and Higabiro all had examples of whole families moving away (l l, 3 and 17 respectively). This was not easily determined with Bunyanya since each year's distribution was entered in a separate register. Other problems with the Bunyanya register was the lack of codes such as C, V and P. In fact there were 23 cases of absent husbands who had gone to Kampala to work. These would still be included in a census count without any other code designating their status. There were other cases of blank dose recordings that were attributed to persons who had traveled out but, "would be treated next year if they were around." In some cases the recorder did put a dash (-) in spaces where people were not treated, but this was not consistent. The Bunyanya register was also inconsistent in having columns ruled and having headings - sex, age, dose - in place. In one household, six names were written without any information on sex, age and dose. The CDD in charge of the register said that these were children, and that they did not have time to record that they had taken the drug during the last distribution. There were several cases of age and sex not being recorded. Finally, the Health Assistant who supervises the CDDs said that the second copies of the record book's for that area were kept at the prograrnme office in Kisoro.

The Oncho Coordinator made his own comments on the quality of village summary reports on the District summary sheets. He observed "problems in filling the report forms" from Suma, Mugombwa, Bikokora, Kashaka, Nyarutembe, Muko, Bitare, and Nyamasinda.. Unfortunately, the Coordinator had not saved any of the village summary sheets for the team to examine and compare with the results obtained from the registers in seven villages as described below.

As seen in the Annex, there was great variation in reported number treated among three sources of data: Village Registers, District Summary Report, and National Summary Report. While the latter two sources agreed on village population figures, those statistics differed from population derived from the registers. Variations were quite large in several cases.

5.8 Treatment Coverage

Distribution for which this monitoring exercise was undertaken occurred between March and April 1998. This was said to be the first distribution under the CDTI system. The normal

APOC Monitoring in Uganda - 64 practice was to leave the ivermectin in the village for two weeks to ensure that all people not present on the actual distribution day had a chance to be treated. The Onchocerciasis Coordinator reported that coverage was calculated based on eligibles who were defined as people five years and older, since it was thought that pregnancy and illness were short-term states. The use of census/total population as the denominator for calculating coverage was introduced to the Coordinator by the team.

Official reported population based coverage over the past six distributions is seen in Table 5.4, The table is intended roughly to show trends. It should be noted that according to both village registers and the Oncho Coordinator's summary report, a number of refugees and Congolese people were among those treated. It should also be noted that the figures obtained below were primarily from national data sources, and as explained above, there was variation in the various data sources reviewed. The GRBP projected number of persons treated for 1998, which equaled the estimated number of eligible persons, was 15,094.

Table 5.4 History of Coverage in Kisoro District.

Kisoro 1993 1994 1995 1996 t997 1998

Villages 23 23 3l 3l 3t 3l

Population 13143 14523 t7864 17893 I 8459 19448

Treated 8916 t0362 t3879 14592 12142 13653

Coverage 67.8 71.3 77.7 81.6 65.8 70.2

a. Coverage within Villages Based on CDD Records

Since it was not possible to conduct the household survey, information presented in the next table compares data extracted from the register books in each of 4 Category A villages, with the summary statistics available from the GRBP ofiice. Three Category B villages, Nyarurambi, Gakenke and Kinanira are also included in the Table 5.5 below.

As can be seen, there was a fairly good comparison between the registers and the summaries in Kikobero, Nyarurambi, and Suma. The Coordinator explained that discrepancies were due to human error when local health staffmade the summaries from the registers. Some of these problems that may have induced such errors were discussed in the previous section.

A major contrast comes with the data from Bunyanya. This was selected based on it being a low coverage village based on population as a denominator (59.4%o) The village register records a population of only 540 compared to 784 for the summary statistics. lf the 23 absentee husbands were removed, as would have been done in Suma or Kikobero, the coverage of the defacto population would be even higher at 86.4o/o. In neighbouring Gakenke, the situation is reversed. Summary statistics show a coverage of 65.5o/o, while the register shows both a lower population

APOC Monitoring in Uganda - 65 and lower treatment, yielding a population based coverage of 50.6Yo. Gakenke was also notable for the high number of households (approximately l9%) in the register that had not taken treatment since 1996, but had not moved away. The CDD said simply that, "They don't want to come for the drug."

The register from Higabiro also did not correspond well with the summary reports. While the population in each case was close, 651 register and 648 summary, the treatment figures had a gap of 49 persons. Thus, the population coverage calculated from the register was 73.0%o, while that of the summary reported 80.9%. Population discrepancies created the disparity between village register coverage (59.9%) and national coverage data (78.4o/o) in Kinanira.

Table 5.5 Comparison of 1998 National Summary Statistics and Village Registers

Village Census Register Summary Statistics

House- Pop. Number Percent Village Number Percent holds Treated Treated Census Reported Treated Treated

Kikobero 130 951 464 48.8 954 475 49.8

Bunyanya 110 540 447 82.8 784 446 59.4

Suma 128 647 531 82.1 630 536 85.1

Higabiro 135 651 475 73.0 648 524 80.9

Nyarurambi 82 412 321 77.9 408 308 75.5

Gakenke 104 515 261 50.6 586 384 65.5

Kinanira 103 596 357 59.9 427 335 78.4

While sitting atop the ridge that served as the community meeting point for Bunyanya, the team observed that there were several other villages in sight that were not included in the programme. The CDD and the Health Assistant from the nearby clinic noted that people from these villages often requested the drug. They further explained that the Oncho Coordinator had told these villages that if at least six people were found to have oncho, their villages could be included. These villages were asked to organise themselves for examination. One apparently had requested someone to come examine them, but this has not yet happened. The Coordinator confirmed that they were willing to examine these villages. The issue of making ivermectin available at facilities for hypo-endemic villages was also discussed with the Coordinator, but no plans are underway along those lines at present.

In both Kikobero and Bunyanya, the CDDs noted that people just across the mountains in Congo (former Zure) were suffering from onchocerciasis and that there was much interchange among the peoples of both countries. They were concerned that the Congolese were not receiving the programme, especially as many of their relatives lived there. Also the CDD reported that until 1997 people from Congo would come for the drug, but that since then, he had been advised not

APOC Monitoring in Uganda - 66 to treat them. In Kinanira, there was record of numerous refugee families in the area prior to the 1998 distribution, as well as "82 Congolese who were treated from 1996-199'7," according to the CDD and as confirmed in the register.

Table 5.8 (at the end of this section) provides more information comparing nationally reported statistics (GRBP), district summaries and village registers for 1998. Generally the three data sources were not in agreement either in terms of population and/or treatment figures. The contrasts were greatest at Bunyanya and Kinanira. The Oncho Coordinator himself noted that CDDs in several of the villages had difficulty in completing the village summary forms. The Oncho Coordinator showed the team a sample of the village summary form, but unfortunately he reported that he had disposed of all the village summary forms so as not to clutter the office. This important piece of missing information would have been useful to determine where exactly along the way the discrepancies emerged.

c. Coverage of Villages

As noted, road and weather conditions made it difficult to visit many Category B villages. Of the 6 that were reached, all persons interviewed agreed that the prograrnme had taken place.

5.9 Health Perso nnel Particip ation

One health staffwas interviewed from each of the two primary distribution health units, that is the Rubuguri Health Center that serves Rubuguri and Nteko Parishes, and Kinanira Dispensary, a Catholic Mission facility, that serves Gtovu parish. The Clinical Officer in charge at Rubuguri was one facility-based respondent while the Health Assistant at Kinanira, who serves as community mobiliser for CDTI was the second. The Oncho Coordinator for the district was interviewed using the form developed in Ouagadougou and also provided valuable background information and history on the prograrnme.

This background information included insight into the District management structure that has evolved under CDTI The Coordinator explained that under the mass treatment approach, he personally was in touch with each village. Now under CDTI, he has tried to develop the supervisory and management responsibilities of front line health unit staff. There are Parish level supervisors who relate directly to a village level group consisting of the LCI Chairman, the CBHW and the CDD. In fact in many if not most villages, these three persons actually all function as a CDD team. The parish level supervisors are expected to have the main contact with the villages in terms of organising introductory meetings, supervising the CDD, and other management activities. The Coordinator then does occasional spot checks with villages to ensure that the Parish level people are functioning.

a. Orientation of Personnel

Training and orientation of health personnel occurred at two levels, the district and the health unit. The Oncho Coordinator himself confirmed that he had attended two meetings that helped orient him to the CDTI process. One was more of a fact finding meeting by APOC in Kampala

APOC Monitoring rnUganda- 67 during March 1997, to learn what had been happening at the community level in preparation for designing the CDTI approach. The second was a formal introduction to CDTI held in Enugu Nigeria in April 1997. The Kisoro Oncho Coordinator attended both of these meetings. He pointed out that given the dates of these meetings, the distribution that they had conducted in February-March 1997, could not technically have been undertaken using the still unknown CDTI guidelines.

Concerning the difference before and after the introduction of CDTI, the Oncho Coordinator explained that, "Originally our efforts were based on the belief that as long as we got the ivermectin out, it didn't matter where the planning was done. Now we are emphasising ownership, decision making, planning and commitment of resources by the community, so that the prograrnme is no longer seen as external."

The two Health unit staffwho were interviewed, and both said they had been oriented to the CDTI process. The Clinical Officer at Rubuguri said he had attended a workshop in Kisoro organised by the District Onchocerciasis Coordinator. It was a one-week combination orientation and training of trainers workshop in Kisoro for health unit level supervisory staff. These staffin turn, organised refresher workshops for the CDDs in clusters of villages. The Health Assistant at Kinanira said his orientation occurred during the refresher workshop organised for the CDDs prior to the last distribution.

b. IEC and Outreach Activities

All village leaders, as mentioned above, recalled that the health workers, particularly the Oncho Coordinator, visited the village to initiate the programme. All but one agreed that health workers made follow-up visits. Activities during health worker visits included supervising the CDDs, giving health education, attending to other health issues, seeing if onchocerciasis was increasing or decreasing, talking about eligibility, asking if we had taken the ivermectin, and finding out reasons why some people had not taken the drug. Most leaders recalled IEC at the introductory and subsequent meetings with the use of "pictures." These were the flipcharts developed by GRBP, and one has been given to each village, as was shown to the team.

c. Training and Supervisory Activities

CDDs were asked to report on the health workers' roles generally and supervisory activities specifically. Most recalled that the health staffcame around before the distribution. For example, one said that, "At first they would come and meet the distributers and teach them when the time of distribution is approaching, say 2 or 3 days in advance." A few also said that health staffcome during distribution to supervise and afterwards to collect the remaining drugs.

At Suma the CDD reported that the health workers were specifically called to look at the house the community built themselves to serve as a health post. They were quite proud of this accomplishment, and were told if they did construct such a building, the government might help them staffand stock it. The building was completed in 1997, and shortly thereafter, the health workers visited. Over a year later, no response has been forthcoming The community used:s

APOC Monitoring in Uganda - 68 the building for meetings. Distribution takes place there, and that was where they assembled to meet the monitoring team.

d. Drug Management

In a situation with few roads and few health facilities there are few options for intermediate level storage of ivermectin. In the two facilities that said they served as an intermediate storage point for ivermectin, both showed the team the regular pharmacy store where the drugs were kept. They said space was not a problem, because the ivermectin did not stay long in the health unit before the CDDs collected it. Table 5.6 below outlines the possible storage points used by the programme in Kisoro.

Table 5.6 Potential lvermectin Collection Points in Kisoro Disrtict

ENDEMIC PARISH COLLECTION POINTS LOCATION/PARISH

Nteko Rubuguri Health Centre Rubuguri

Old Nyabwigishenya Sub- Nteko County Headquarters

Kikomo Clinic, Private Nteko

Nyarutembe Kinanira Sub-Dispensary Gitovu

Rubuguri Rubuguri Health Centre Rubuguri

Gtovu Kinanira Sub-Dispensary Gtovu

Iremera Iremera Health Unit Iremera

Rubuguri Health Centre Rubuguri

The Oncho Coordinator noted that it was possible to keep ivermectin at the Iremera Health Unit, which has one endemic village and borders Rubuguri Parish which has several more villages. A visit to the health unit in Iremera Parish revealed that ivermectin is not stored there, according to the nurse on duty. Therefore, the one village in Iremera usually collects its drugs from Rubuguri Health Centre, which is not too far, since the village borders that Parish.

Non-governmental health facilities were involved in the distribution process. The Catholic Clinic at Kinanira in Gitovu Parish took responsibility for the four villages in that area. The nurses kept the ivermectin supplies in their pharmacy store, while a Senior Health Assistant served as CDD supervisor and community mobiliser.

e. Financial Support

The bulk of financial support for the most recent ivermectin distribution (1998) came from APOC

APOC Monitoring in Uganda - 69 funds, while it should also be noted that GRBP provided all the support needed to undertake the 1997 exercise since APOC funds had not arrived at the time distribution normally took place. A rough estimate of funds requested and received for the 1998 distribution, dating back to planning and organizational activities in 1997 , is seen in Table 5.7 . It is important to note that a budgeted Local Administration contribution never materialised as such. With the available financial data, it is possible to estimate the cost per person treated (13,653 persons) in the first distribution effectively under Phase I of APOC was approximately 479, (at Ush 1260 : US $1) for running or operational cost only.

Table 5.7 Operations Financial Support for Most Recent Distribution

Activity Leading to Budget in Ush Source Received 1998 Distribution

Training Supervisors 500,000 APOC 500,000

Sensitisation of Local 780,000 APOC 780,000 Leaders

Updating Village 436,400 GRBP 400,000 Registers

Community 902,050 APOC 650,000 sensitisation and *148,000 Health Education 562,000 District

CDD recruitment and 1,270,000 APOC 1,270,000 training

Distribution 3,885,000 APOC 2,128,400

Stakeholders' Review 2,147,200 APOC in process Workshop

Monitoring and 598,500 GRBP done from central Evaluation

Follow-up meetings in 825,650 APOC not yet considered Parishes

Review Workshop for 623,650 APOC not yet approved Supervisory Staff

TOTAL FUNDS 12,521,450 **8,023,600 Received

Estimated District 3,140,000 Personnel Costs * motorcycle tyre and some staff allowances actually paid ** including Stakeholders' Workshop in process

If one were to include staffing, the following estimates could be used. There were nine supervisory level personnel who could earn between Ush 80-120,000 per month. They were estimated by the Oncho Coordinator to put in at least tfuee months of work on the programme

APOC Monitoring in Uganda - 70 per year. Their average input would then total approximately Ush 2.7 million. Added to this would be four months salary of the Oncho Coordinator at a total of Ush 440,000. Thus total personnel costs at the district level would be Ush 3,140,000. 'The resulting cost per person treated would be 65$.

Finally, the motorcycle attached to the programme was said to cost about Ush 5 million when purchased about ayear ago. This would not be added in to calculations at this point.

5.10 Constraints to CDTI Implementation

a. Constraints in Village Leve! Organization

Village leaders mentioned no specific constraints in the general organization of the programme at the village level.

When asked whether transportation assistance was provided to the CDDs, the universal answer from both CDDs and community discussion group members was "No." The simple reason for this answer is the lack of public transportation in the district. Therefore most travel is on foot from the village to the health unit or primary school where drugs may be kept or training held

Villagers in at least two communities complained about the provision of Ush 100 per household to support the CDDs. There was an argument in Kikobero village among the younger and older male discussion group participants with the former saying they could afford this easily, and the latter saying they don't see that much money in a month. In two village discussion groups respondents claimed that people would be denied treatment if they could not pay the CDD allowance. In other countries volunteer village health workers work for little or nothing, instead basking in the praise, knowledge, recognition and leadership gained through the work. The issue is one of expectations, and when the programme started in 1993 by giving the distribution assistants an (admittedly small) allowance, that set expectations on the part of the CDD that their work requires a cash reward and on the part of the community that the CDDs are really working for the prograrnme (government). It is hard to withdraw an entitlement, which again stresses the need to examine the Kisoro programme in light of its history as opposed to assessing the introduction of CDTI as a completely new activity.

The CDDs noticed other constraints at the village level. In Suma, one CDD pointed out that, "At first we had no central place to distribute, we had no lunch, and it rained. Some people wanted us to go out into the village to their homes and look for them." The building of the community meeting house in Suma has at least solved the problem of central place, and keeping out of the rain.

Most CDDs reported positive response in the community, for example, People were willing to come for the drug, and they came in big numbers." Thus it would appear that the process of organising the programme at the village level is simple enough for most villages to achieve at least a modest success.

APOC Monitoring in Uganda - 7l In discussion groups, most people did not perceive constraints or problems, but suggested that the system should continue as it has been doing. Those that realised problems offered the following two ideas:

transportation and communication difficulties, and

o low living standards of the people, hence no means of sustaining the programme including giving incentives to the CDDs.

b. Constraints in CDD Performance

Although village leaders were concerned that the CDDs "worked for nothing," they saw no problems in their performance. Typical comments were, "He makes sure that everybody in the village has got the drug." "People have never complained about him."

A few people did comment that CDDs who did not receive the Ush 100/: compensation refused treatment, though no CDD admitted this to be true. Of course even the idea of a payment could serve as a deterrent for some people, whether it is enforced or not. The GRBP representative has researched the issue in more detail and found that where communities made the decision fully and consciously to reward the CDD by whatever means they thought appropriate, their coverage rates were higher than in places where the community felt that the reward system was imposed on them by, for example, local leaders.

The fact that LCI chairmen were also CDDs in many villages appears to be a double-edged sword. On one hand, their involvement in the prograrnme could demonstrate a high level of political and community commitment to the prograrnme. On the other, it could represent an attempt to consolidate power over village activities and use CDTI as a means of gaining financially by those in power. Since this village level political structure is unique to Uganda, it is not clear what lessons can be learned for other APOC countries. For example, in Nigeria, it would be rare for a traditional village chief to take on responsibilities such as distributing medicine, although he may try to manipulate, depending on his relative strength in the village, who is chosen for that job. The issue may simply be one of direct versus indirect control.

c. Constraints in District Level Organization

The major constraint to any public health programme in Kisoro is the lack of road infrastructure Fully 38.7o/o of villages are not on a motorable road. Even that figure is small. For example, Bunyanya village technically extends to a road, but the centre of the village is a half hour walk from the road. There appears to be no formal system of public transportation, such that CDDs usually walk to health facilities to collect ivermectin, and health workers usually walk to the villages for supervision. Also, concerning facilitation of community programming, only 29Yo of villages are "near" to a health facility. Of the five parishes involved, two have no recognised health unit.

Concerning transportation, the Oncho Coordinator reported that during the time of distribution it

APOC Monitoring inUganda - 72 is possible to get official transportation. Overall the District Health Office has six motorcycles and two vehicles. One motorcycle is designated for the Oncho Programme, though officially, all transport are operated in a pool. The Coordinator noted that it took a long time to get a new tyre for the motorcycle prior to the last distribution. Again, it must be remembered that many villages are not accessible, even with a motorcycle.

Another district level issue is season. Both community members as well as health staffwant to avoid distribution in the rainy season when roads can become impassable (as witnessed by the monitoring team first-hand) and when major farming activities are underway. This leaves two relatively short windows of opportunity, January-February and June-July, as dry periods. The most recent distribution took place between March and April, to the consternation of some villagers, but the LOCT noted that it is difficult to mobilise people during the Christmas and New Year periods for effective treatment in January, and likewise, they do not wish to delay treatment more than necessary into the middle of the year.

d. Constraints in Health Personne! Performance

The GRBP representative spoke on behalf of local health staffwhen he briefed the team that APOC does not want to give allowances for field work, even when health workers must sleep out in the field, and that similarly district administrations also do not have the funds, or delay in providing such allowances.

Ironically, the three health staffinterviewed said that there were no constraints to their work. The Oncho Coordinator said that transportation would eventually be made available during the months when the most work was to be done, although the District rarely assisted in fueling and maintenance of the vehicles. Of course the obvious constraint to transportation is that many of the villages cannot be reached by motorcycles, let alone 4-wheel drive vehicles.

Although local funding is not forthcoming, the stafffelt that funding from Kampala to the Distirct, and then from the District to the health unit was timely. They also said that ivermectin supplies were timely, and that there were adequate storage facilities.

5.ll Prospects for SustainabiliU

a. Evidence of Community Commitment

Village leaders were divided on whether they thought the community could manage the programme into the future. The positive comments that follow build on the communities' experience with the programme to date:

).{-J- Yes, because we have attended courses. * l(e are already doing it. The Chairman collects the drugfrom the Health Unit, and we distribute it ourselves, and the chairman takes back the surplus. * The community is able because already it is lhe chairman who distributes it in the village.

APOC Monitoring rnUganda - 73 * Yes, because we are after (saving) our lives. * We can select the people of our choice to collect the drugfrom the health unit.

The three negative comments are listed below -

a We know we are getting the drugfree. How canwe tell people to payfor it (as a means of sustaining the programme)? The community can decide, but according to me, they cannot manage it. x (They cannot manage) because ofpoor storage. x I won'l say we cqn manage it because the organisers may withdraw their support if we say we can.

Both leaders from Higabiro gave evidence of community problem solving. One noted that, "The problem at first was it was raining, and the CDDs had no raincoats and lunch allowance. We asked the societies to assist in the problem." The second said, "The distributors suffered from hunger while waiting for people. The villagers met and decided to give Ush 100 from each family to the CDD." The other leaders did not mention and organizational problems at the community level.

In village discussion groups there was a variety of opinion on the question of sustainability. In Kikobero, younger men claimed that they saw Ush 100/= every day and thus could afford whatever was asked of them. Older men said that they rarely see this amount in a month and doubt the ability of the community to sustain the programme. Interestingly a cup of local alcoholic drink costs about Ush 100/=, and many older men were seen to be consuming this in bars when the team visited.

In both Bunyanya and Higabiro, the groups felt that they could sustain the programme, "Because we are already doing it." They noted that the LCI is deeply involved, and hence the distirbution system is easier. They see a continual role for health personnel as advisers.

At Suma the question about community ability to sustain the programme was interpreted by both male and female groups as a threat that the organisers were preparing to pull out and leave the community on its own. In that context, they all refused to claim any community reposnsibility for maintaining the programme.

b. Evidence of CDD Commitment

Even though the issue of cash reward is still unresolved for the CDDs, there are positive signs of their commitment as evidenced in the CDD comments when asked if they were willing to continue the work -

o Our people still need us to continue, andwe wont to develop our oreq. o People like me, and I would like to learn more than what I have learnt at present. People are recovering (from onchocerciasis), so I would like to see my village develop.

APOC Monitoring rnUganda - 74 o Yes, I am willing to continue as a CDD. D As long as they (community members) are willing to support me, but d they want to replace me, I con step down and support whoever is elected to replace me. D Yes, the disease still exists in the community, qnd I am willing to help them.

One CDD expressed this reservation. "I am willing if only the duration of distribution is shortened from three weeks or a month to just three or four days." Another said, "Yes, I am giving help to the nation, but I want the government to support us by giving lunch allowances."

c. Evidence of Health Personnel and System Commitment

The Oncho Coordinator in Kisoro said that a major context for sustainable participation by the District was an understanding of the local financial situation. He said that approximately 80% of the district health budget comes from external sources including the Central Government as well as donor money channeled through the government. While it was estimated that the oncho control programme would cost Ush l0 million during the first year, the District gave nothing toward this because the new programme came up midway in the 1996-97 fiscal year. In the next funding cycle, onchocerciasis control was not specifically mentioned, but the Coordinator was told that his activities would be subsumed under PHC. During the 1997-98 fiscal year, only Ush I18,000 was provided, Ush 70,000 for a tyre for the motorcycle and the remainder for allowances during the times of distribution. The Coordinator said that this does not augur well for District level sustainability in the "next 15 years."

Both of the health unit staffinvolved in the programme expressed their commitment to continue the work. One thought the programme was a good way to "avoid dependency syndrome" by the villagers. The other said, "I know the dangers of onchocerciasis and would like to see th people treated." The Oncho Coordinator was uncertain. He noted that in the beginning of the programme, onchocerciasis was his main focus as an Entomological Officer. Now he is responsible for malaria control, disease surveillance, and the task force to control epidemics. H appears to be the only person in his "unit," and certainly is the only person with appropriate training for the job.

APOC Monitoring in Uganda - 75 Table 5.8 Comparison of 1998 Population, Treatment and Coverage Between National, District and Village Register Data Sources in Kisoro

PARISH COMM POP98 POPViI Rx9SNat Rx9SDis RxgSVil CovNat CovDis CovVil Gitovu Bunyanya 784 540 466 433 447 0.594 0.552 0.828 Gitovu Gakenke 586 s15 384 214 261 0.655 0.365 0.507 Gitovu Kinanira 427 596 335 269 357 0.785 0.630 0.599 Gitovu Nyarurambi 408 412 308 278 321 0.755 0.681 0.779 lremera Nyamasinda 482 384 292 0.797 0.606 Nteko Bikokora 780 652 487 0.836 0.624 Nteko Kabaya 502 353 228 0.703 0.454 Nteko Kahurire 726 554 498 0.763 0.686 Nteko Kikobero 954 951 475 455 464 0.498 0.477 0.488 Nteko Kikomo 399 289 260 0.724 0.652 Nteko Muqombwa 611 475 407 0.777 0.666 Nteko Murore 2s4 199 199 0.783 0.783

Nteko Nteko 742 600 5 1 1 0.809 0.689 Nteko Nyamikumba 450 356 324 0.791 0.720

Nteko Suma 630 647 536 521 531 0.851 0.827 0.821 Nyarutembe Bitare 539 433 403 0.803 0.748

Nyarutembe Kibyivoni 1 089 630 513 0.579 0.471 Nyarutembe Kigezi 558 387 279 0.694 0.500 Nyarutembe Muko 473 267 224 0.564 0.474 Nyarutembe Nyarutembe 443 284 210 0.641 0.474 Nyarutembe Shunga 538 443 412 0.823 0.766 Rubugiri Higabiro 648 651 s24 467 47s 0.809 0.721 0.730 Rubuqiri Kafuqa 871 516 422 0.592 0.485 Rubuqiri Kanyamahen 300 256 216 0.853 0.720 Rubugiri Kashaka 426 330 375 0.775 0.880 Rubuqiri Kashiia 1495 818 563 0.547 0.377 Rubugiri Nombe 536 376 230 0.701 0.429 Rubuqiri Nyabaremur 693 525 476 0.758 0.687

Rubuqiri Nyabicence 481 368 257 0.765 0.534 Rubugiri Rugandu 797 604 472 0.758 0.592 Rubugiri Rushaga 826 526 476 0.637 0.576

TOTAL 19448 1 3653 11371 0.702 0.585 SURVEYED 4437 4312 3028 2637 2856 0.682 0.594 0.662

APOC Monitoring in Uganda - 76 6. KASESE DISTRICT

Kasese District was removed from the list of areas to be visited by the team at the last minute. The group arrived in Uganda on Saturday night, 19ft September only to read in the newspaper that rebel forces had made an incursion into Kasese the day before. The UNDP office was consulted, and it recommended that the area not be visited at this time. This is the second occasion when an independent monitor has been turned away from Kasese because of instability in the area.

Ironically, the onchocerciasis programme staffare currently carrying out the 1998 distribution of ivermectin in Kasese, as seen in the chart below. Another consideration in delaying the monitoring in that area therefore, is the fact that it would be difficult to assess programme procedures and effects fully until the current exercise is over.

1998 ACTIWTY WORKPLAN FOR KASESE DISTRICT

Month June July August September October November

Activity Mobilisation Health Training Distribution Distribution Dislribution Education Skin Snipping

7. CONCLUSIONS AND RECOMMENDATIONS

7.1 Summary of Achievement of Monitoring Indicators

The team used the set of monitoring indicators in Section 2 above to summarise the major '' Ugandan findings of interest to APOC. These are attached on the next page. As can be seen, the ivermectin distribution system from central through to village level is fairly good. Due to the pre- existence of ivermectin distribution, the system of CDDs is in place, as evidence of updating of their training exists. The two weakest areas of attainment are lack of a PHC system in which to integrate the CDDs and lack of visible evidence that village summary forms/reports were made.

It was difficult to put exact figures to many of the indicators. Selection of CDDs was a case in point. In Hoima, results clearly indicated that only l3o/o had been chosen at a village meeting. In Masindi, one had to imply from the interviews that as far as CDD selection was concerned, CDTI principles and practices had not been implemented. Instead, CDDs selected by the programme during previous efforts were most likely "returned to office." In Kisoro conflicting reports were received within the same village about how the CDDs were selected, but clearly those currently serving were the same who had been working with the programme in its pre-APOC days

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$ rO (o F- 7.2 Conclusions

In conclusion, the team learned several important lessons as outlined below

1) CDTI implementation in Phase I Districts in Uganda is actually a transition from existing community based mass distribution prograrnmes. This history means that the Monitoring Team was not studying the initiation of CDTI in a new area, but the adaptation of CDTI to established procedures. Respondents often had difficulty separating former with "new" or "improved" community contacts and activities.

2) The position of CDD has political and at times ethnic overtones in most communities where either the LC1 members, especially chairpersons, or their favoured candidates are serving. This does not necessarily inhibit delivery of the ivermectin, but does affect the type of reward that many CDDs expect, that is cash.

3) The payment of caslr/kind in appreciation of CDD effort is a bone of contention in many communities. Although the District Oncho Coordinators supposedly suggested other options to the communities, cash payment of Ush 100/- was the common choice. In many communities, people see this payment as a barrier to receiving treatment.

4) Communities are able to maintain census and record books. There are valuable resources for any PHC prograrlme. The problem comes in reconciling community level entries with statistics reported at the district level. CDDs and District Coordinators are of varying opinions about the capability of the CDDs to undertake reporting, but clearly more training and supervision is needed in this area.

s) Village meetings are supposed to be the norm in Uganda under the present political climate, and offer an ideal means for introducing new programmes and making participatory decisions. While in most communities villagers reported taking part in CDTI decisions, in some, they felt that a powerful few were actually directing decisions. Local supervisors and coordinators need to play an active role in ensuring the participatory process is actually utilised.

6) The lack of PHC and village based medicine kits was seen as a weakness of the prograrnme by community members. They disliked trekking long distances for treatment of side ef[ects and other common diseases.

7) The sense of ownership among communities varied widely. In many, people believed that ivermectin distribution is a government programme that the government should continue. In some, people felt that CDTI represented an effort by government to abdicate its responsibilities to the people. In a few, villagers

APOC Monitoring in Uganda - 8l said that they had been handling the prograrnme by themselves and felt confident continuing to manage it themselves. Obviously, communities have different "personalities," but it is also true that the level and quality of facilitation and supervision my health personnel affects community attitudes toward prograrnmes. Efforts may be needed to re-introduce the prograrnme in many communities.

8) The reported financial contributions to CDTI at District and National levels does not appear to be in keeping with APOC desires to establish local commitment to running the programmes after five years. Ministries of Health and District Health Departments historically have been reluctant to put money into programming, but spend most of their budgets on overhead and recurrent costs. In addition, Districts generally have a poor local financial base. While such contributions as personnel look good on paper in APOC proposals, these will not be enough to guarantee an ongoing CDTI prograrnme.

e) The team found that the instruments need major revision including simplification. We decided that the short CDD interview in Category B villages was unnecessary. Sections of other interviews were repetitious and need to be rationalised. Some questions are difficult to frame in simple English, let alone to translate into a local language. CDDs in some areas had difficulty responding to the section on quality of training.

10) Finally, the team observed that monitoring is quite difficult in the rainy season. Future monitoring visits should be scheduled under more favourable conditions.

7.3 Recommendations

The following recommendations are offered concerning the sustainability of CDTI in Uganda:

r) Retraining and supervision at all levels is needed to ensure accurate reporting of coverage from the village up through the national level as well as appropriate facilitation of community involvement by District level staff

2) The issue of appropriate show of appreciation for CDDs must be tackled promptly as this appears to be holding coverage to only moderate levels. Re-education meetings are needed at village level where it is ensured that all persons, male and female, are fully in attendance and contribute to the decision making process. This would also be a time to reinvigorate community commitment to the prograrnme, as it has not been fully established in all villages.

3) For future monitoring, APOC should endeavour to identify some Districts where ivermectin distribution is just beginning or one one or two years old in order to get a truer picture of what the introduction of CDTI really entails.

APOC Monitoring in Uganda - 82 4) APOC, Ministry of Health and the various District Health Departments need to re- evaluate their financial commitments to the CDTI process so that programme costs will actually be assumed by the local health system after APOC has phased out. A return to complete reliance on NGDO financial efforts after five years would represent a major setback for the prograrnme. s) Effort is needed truly to establish PHC in these remote villages and integrate CDTI with it. The absence of village medicine kits, one benefit of PHC, is a major deterrent to participation in CDTL

APOC Monitoring in Uganda - 83 ANNEX

TO REPORT OF APOC INDEPENDENT MONITORING TEAM TO UGANDA:

STUDY INSTRUMENTS

1. Key Informant Interview: Village Leaders

2. Group Discussion Among Community Members

3. In-depth Interview of CDD

4. Questionnaire for Health Personnel

5. Household Survey of Villagers

a. Category B Villages

b. Coverage Survey

Uganda Annex - I Kqt Informant Interview: Village Leaders

Opening: please tell us about any programme concerning onchocerciasis treatment in this village?'

1. How did the CDTI prograrrune get started - plaruring CDTI?

a. who brought the idea of the onchocerciasis progriunme to this village?

b. when did the person(s) come talk with you about onchocerciasis?

c. did the person(s) meet with you and other village leaders first?

d. what did he tell you? Did he ask for you to arrange a meeting?

2. Tell us about the time when the drug was distributed?

a. when was first time; how many times since

b. turn-out first time, subsequent

c. what went well first time, subsequenfly

d. problems first time, subsequent

PROBE r if problems, describe how it was resolved against second time

r what about reactions to the drug? And how it was handled?

r is there a village drug kit, and if so how handled

e. generally how did CDD perform

f. generally how did community respond

PROBE + accepting treatrnent

+ making contributions to help

3. Health Worker Role? aside from first visiUmeeting, did health workers come to village again after l"tmeeting

if yes, what did they do (describe for each below)

PROBE + visit with CDD

'NOTE: There has likely been some sort of ivermectin distribution programme in the area before. Be sure to distinguish the current CDTI from old efforts

Uganda Annex - 2 r discuss with village about the distribution

.) observe distribution

r otrcrs health activities

4. Was there any Follow-up? Describe actions taken by the community after distribution

i we discussed outcomes

i we reviewed CDD's performance

r we planned changes for next time

+ others

5. What is the name of the person(s) in this village who give out the drug for onchocerciasis?

a. How was that person selected to do the work? tr at a village meeting - everyone discussed, selection tr health worker selected O village chieflleader tr village elders only E other

b. What criteria were used to select the person(s)

c. How well has the CDD done the work? E very well D fair E poor @xplain)

6. Haveyou changedyour CDD? O yes D no

if yes, why?

7. How was the date for distribution decided? tr at a village meeting - everyone discussed, selection tr health worker selected tr village chieflleader E village elders only O other

8. What system of distribution was decided?

E house-to-house O central place (specif ) O other

How was this decided? Q at a village meeting - everyone discussed, selection tr health worker selected tr village chieflleader D village elders only E other

9. Do you think this community is able to manage the CDTI programme on its own for the future (i.e. for the next l0 years?) D yes C no E not certain Please give reasons for your answer.

Uganda Annex - 3 GROAP DISCASSION AMONG COMMUNITY MEMBERS

A. PREPARATION

1. Ideally to be arranged before team arrives 2. Need comfortable place that offers some privary and enough places to sit 3. Important to get representation of general community. - 6-8 people per group 4. Notjust elders and those directly responsible for distribution because they too have vested interests. 5. Depending on culture - may need separate meetings for male/female and also youth/adult so people speak freely 6. A neutral person should be moderator while another person takes notes (recorder)

B. OPENING: general introductions and explanations

C. DISCUSSION POINTS

l. What do people know about the programme, its purposes and procedures?

2. a. Have you been invited to a CDTI meeting?

b. How may times have these meetings been held?

c. what happened at the meeting - what was discussed

3. What they expected, desired from the programme

4. a. How many times/For how long is ivermectin to be administered?

b. How was ivermectin distributed in the community? (activities, constraints, initiative to solve them)

c. What are the procedures for treatment (eligibility, criteria, dosage)?

d. Was ivermectin provided for FREE - if no why

5. What they like/dislike - convenience; mode of distribution, etc.

6. Any side effects? How were these managed?

7. How well it was organized

8. a. How does the community provide and support or show appreciation for the CDD?

b. What role does the community play in supervising the CDD? -t c. mobilization and compliance?

9. What specffic contributions did the community make toward the programme'/

Probes: Health Education - who did it

Mobilization - who involved

Transportation - who provided it

CDD support - what was nature

Uganda Annex - 4 Other Financial - reason, who

Other Material - reason, who

10. Did tlte community - either at that first meeting or later make decisions? @escribe details)

a. who would be responsible for giving out the drug (ivermectin)?

1) how was the person(s) selected? 2) any support given to help the person get training? 3) any change in CDD since beginning - why, how? a b. how the drug should be collected from the health facility/oncho office?

l) what help did the community render 2) how far in advance was drug collected 3) any problems getting drug on time - why 4) was drug adequate for villagers

c. the date(s) when the drug would be given out to the villagers? r) what dates and why

e. the method/system by which the drug would be given out? r what system (h2h, central) and why

I l. How would they do it differently next time and why?

12. a. How prepared is tlte community to take control of ivermectin distribution?

b. How does the commuruty intend to sustain the exercise for several years?

D GENERATING IND ICATORS :

O Then ask specifically what indices they believe would measure the true success and problems of the programme in this village from their own perspectives B brainstorm lists allowing all to speak tr not criticizing individual contributions at the time o later going back for clarification, etc. D prioritize top three community generated indicators tr determine criteria for success o discuss each indicator and determine how far the programme has gone in successfully meeting the indicator

a-

Uganda Annex - 5 IN-DEPTH INTERWEW OF CDD

Name of Village Name of District:

Name of CDD Name of Parish:

Gender: tr female E male Main Occupation:

A. OVERVTEW OT'THE PROGRAMME PROCESSES

Opening: please tell us about any prograrnme concerning onchocerciasis treatment in this village. !a l. How did the prograrnme get started - Plaruring CDTI?

a. who brought the idea of the onchocerciasis prograflrme to this village?

b. who introduced the facilitating team to the community?

c. when did the person(s) come talk with you about onchocerciasis?

d. did the person(s) meet with you and other village leaders first?

e. what did he tell you? Did he ask for you to arrange a meeting?

f. did a meeting hold to discuss tlre onchocerciasis progmmme with all villagers?

r who attended, about how many - women, youth, children

g. what was discussed at that meeting? What was decided/resolved

2. Did the community - either at that first meeting or later make decisions? @escribe details)

a. decided who would be responsible for giving out the drug (ivermectin)?

r how was the person(s) (CDD - i.e. yourself; selected

1 any support/appreciation given to help the CDD to go for trairung

I any change in CDD since beginning - why, how

b. decided how the drug should be collected from the health facility/oncho offrce?

r what help did the community render

- how far in advance was drug collected

r any problems getting drug on time - why

Uganda Annex - 6 r) was drug adequate for villagers

c. decided the date(s) when tlte drug would be given out to the villagers?

r what dates and why

d. decided the means by which to encourage people to come out and receive the drug?

e. how and by whom were the above decisions made?

f. what specific contributions did the community make toward the programme?

Probes: Health Education - who did it

Mobilization - who involved

Transportation - who provided it

CDD supporUappreciation - what was nature?

Other Financial - amounts, reasons, who provided

Other Material - type, reason, who

3. Tell us about the time when the drug was distributed.

a. when was first time; how many times since

b. turn-out first time, subsequent

c. what went well first time, subsequenfly

d. problems first time, subsequent

r if problems, describe how it was resolved against second time

r what about reactions to the drug? And how it was handled?

+ is there a village drug kit, and if so how handled

e. Was the ivermectin given FREE to the villagers? B yes O no a' If no, how much? If no, Why?

f. generally how did community respond

r accepting treatment - explain

+ making contributions to help - explain

4. Health Worker Role? aside from first visiUmeeting, did health workers come to village again after I't meeting if yes, what did they do (give details on what happened each below)?

Uganda Annex - 7 r visit with CDD (you) - supervision (described)

r discuss with village about the distribution

r observe distribution

* others health activities

5. At which occasions did the health personnel contact you?

D None D Before distribution tr During distribution O Soon after distribution

6. Follow-up? describe actions taken by the community after distribution

I discuss outcomes

r) review programme performance - how things went

r plan changes for next time

r otlers

7. Are you willing to continue as a CDD? Why/why not

B. DRUG MANAGEMENT

l. Drug Collection

a. how did you estimate number of drugs needed, number of people to be served D census D previous treatrnent records D house count D other

b. how did you let health workers know -

r how many drugs you needed

r when needed drugs

c. community provide any help for collecting drug? O yes Dno if yes, What did te do? tt

d. specifrcally - how was transportation managed

e. what mode of distribution was used in your village D house-to-house E central place (where ) Q other: Why was this method chosen?

Uganda Annex - 8 2.Drug Management in Village

a. any tablets on hand: counting tablets _

b. observe stomge facility: describe hoilwhere kept, containers, locations, security

c. storage constraints

d. observe village drug kit - present or not

r if present, what inside, quantities: analgesics _ antihistimines

+ ask CDD about purpose and procedures for each drug

C. REVIEW RECORDS

L Recording and Reporting Procedures

a. please show us how you kept the record during the distribution

r) review form/notebook and inquire about each section - what for, etc.

b. describe problems with recording system

c. what about people who received drugs late - ask to see example

d. Do you report your obsewations/problems to the health personnel? E yes E no

if Yes, what happened

if No, why not

2. Census: a. Presence ofnotebook fl yes D no

b. Condition of notebook E neat E worn/used Ddamaged

c. Evidence ofupdating O yes O no ifyes, when last?

d. Village population according to notebook (date)

CENSUS Male Female Total

<5

>5

Total

3. Recording: a. Type of format: fl notebook C tally sheet C record form D none

b. Data tlpes: E name D gender O age E no. tablets E side effect O ineligibles

Uganda Annex - 9 c. Condition of Notebook/forms E neat O worn/used Bdamaged

d. Summary of Distribution Statistics Present 0 yes D no

e. Statistics Recorded # drugs received

# dmgs dispersed:

# drugs on hand:

f. treatment register present D yes Q no

g. Observation os erors: l) any ages <5 years recorded./treated _ (actual #)

2) any gaps in recording _ (# and give examples)

3) verification - systematic sampling of 5 people on list - fill table

SN Name Tablets recorded Correct by Stick

1

2

5

4

5

NOTE:4-7 removed

8. What information do you think you should keep record of for CDTI?

9. How well do you think you have been keeping the records?

10. What constraints, if any, are you facing in keeping CDTI records? (Itemize where possible)

I l. What suggestions, if any, would you offer for successful record keeping for CDTI?

12. Please comment freely on the records presently being kept for CDTI

D. ASSESSMENT OF OUALITY OF TRAINING

l. Materials and Methods

a. what materials were you given during training: @robe for those not mentioned)

D notebook D pictorial form D pencil D pencil sharpener fl eraser Dchalk- 3 colours Dknife/saw E marker D tape rule O stick E Others:

Uganda Annex - l0 b. what methods were used during the training

E demonstration D problem solving exercise E practicals O lecture E others:

c. Did you mosfly sit and listen to the trainer O yes Ono

During the training, were you actively involved in doing things? E yes Eno

Were your opinions and ideas sought by the trainers? E yes Eno

Did you work together with other trainees? E yes Dno

2. Size/Duration a. size ofgroup: _ b. duration/# days:

3. Venue Distance from home E near Q far explain

Type of facility: D school O town hall E other

How familiar/comfortable

Seating arangement D rows fl Circle/semi-circle D other

Spaciousness Oadequate Dinadequate

4. Content of Training (Please tell us all the things you were taught during the training)

E Disease E Cause/Etiology, O symptoms E Socio-economic importance O Community perception of disease Q Ivermectin as treatrnent for a long time O other:

D How long/many times ivermectin will be administered?

O How often in the year to distribute

E Coverage of distribution (i.e. treat as many people as possible)

O Dosage determination: i.e. How to measure

tr Who should not be treated? O pregnant fl < 5 Q <90kg D very ill D other _

tr Side effects: D Counseling/Refenal

O Reporting O treatment E defaulters F D absentees fl excluded persons 0 severe cases

E Other topics

UgandaAnnex- ll SUESTIONNAIRE FOR HEALTH PERSONNEL

District: Position:

Qualification:

Responsibilities in Oncho Programme: O Oncho Coordinator D other (explain)

l. Quahty of Training 3. Who introduced the facilitating team to the community? a. General Orientation O health staff O government administrative staff D didyou receive any general orientationto tr NGDO staff CDTI? E other

O who conducted this training? 4. Is health facility available for storage?

O where did it take place O yes O no ifyes, locations

tr howlongdiditlast 5. What constraints of storage did you have?

tr what were the importat points covered? O No constraints O No space to store the drug b. Training of Trainers E Store keeper not available tr Other 1) did you receive training on how to train CDDs? 6. Who supervised the CDDs

2) Nature of training D Not supervised D Village head 3) Who provided the training? D Village health committee D health personnel 4) How were you trained? O Other

5) Mention the materials/methods used for 7. How many times did the health personnel contact your training the CDD?

8. At which occasions did the health personnel 6) What was the duration of your training? contact the CDD?

7) What was covered in the tmining? O None O Before distribution 8) Where did the training take place? tr During distribution O Soon after distribution -t 2 Who arranged the first meeting with the community? 9. What constraints do you have in supewising the CDD? O healthstaffgovernment D administrative staff E No constraints tr NGDO staff E means of transport D other D Too much work D Supervision allowance/enumeration D Other

Uganda Annex - 12 10. Do you report your observatiors to the high level?

Extract information on : Q No D Yes, records available O Census E Yes, but no records available D number/% of villages treated 11. How many cases of side effects were referred to you tr Number/% side effects reported and treated

12. Do you get the drugs to the district/LGA? O %eligible

O Sent dovrn to the district tr Number/% treated D I go to bring the drugs O Number/% eligible treated

13. Have there been any delays in both receiving and d. evidence of updating reports/forms after late distributing drugs? distributions in villages

Eyes Eno 19. MANAGEMENT

if yes, explain why a. Date(s) on which funds received - and from where/whom? 14. Have you any constraints in getting the dmg?

D None b. Received by Whom? E Transport problem E Inadequate supply c. Amount received (in currency) O Delay in supply D Other d. Date(s) drugs received

I 5 . How do you estimate the quantity of drug required e. Quantity received by the district? . # of tablets gtven _

D Not responsible . To whom: O Number used during last treatrnent D health facilities # tr Other D CDDs # 16. Did you get the drugs when required by the district? O other (who) # _

Oyes Eno . # of tablets remaining

ifno, why? O shortage at state, regional level f. Place/conditions drugs stored: D means of transport E other C. Date(s) and Venue for trainings 17. Are you to continue to participate in the !f willing CDTI programme Dates Venues D yes D no Q not certain

please explain:

18. Records of Distributior/coverage @istrict Level)

a. Presence of Village summary sheets

b. Presence of District Summary sheets

Uganda Annex - 13 h. Groups at trainings (give details) D CDDs j. Initial contacts (dates, groups)

O Other Health Personnel Contacts Dates fl LocaINGOVPVOs

D Personnel other agencies

D others

l. IEC activities (with dates)

Activity Dates

SI.JMMARY OF DATA AVAILABLE AT DISTRICT OR SUB-DISTRICT LEVEL

Village Al Village A2 Village A3 Village A4 Total of 4 District A'S TOTAL

# Treated last dist.

Census

Date Census last updated

coverage (Rx/Census)

Uganda Annex - 14 HOUSEHOLD SURVEY OF WLLAGERS Category B Villages ONLY Village District/?arish:

l. Do you recall a village meeting where the onchocerciasis progtamme was discussed?

fl yes 0 no D uncertain if yes, when _ who (different types of people0 was there?

2. What was mentioned at that meeting? (Spontaneous mention or$ - r') a _ Mectizan@ is free _ taken by all but ... _ pregnant women _ children < 5 _ very ill people _ should be taken yearly _ community will gain - not develop blindness, rough skin _ community should collect its own drug _ community should select CDDs _ CDDs will not be paid by govUoutsiders - only community can "reward" them Others

3. What is the name of the person(s) in this village who give out the drug for onchocerciasis?

How was that person selected to do the work? tr at a village meeting - everyone discussed, selection tr health worker selected tr village chieflleader Q village elders only E other

Did you personally have a say in the selection? O yes O no O can't remember

How well has the CDD done the work? E very well E fair E poor @xplain)

4. How was the date for distribution decided? O at a village meeting - everyone discussed, selection tr health worker selected tr village chieflleader B village elders only Q other

5. Was ivemectin given FREE? O yes D no if no, why

6. What system of distribution was decided?

D house-to-house 0 central place (specify ) tr other

How was this decided? D at a village meeting - everyone discussed, selection D health worker selected D village chieflleader D village elders only E other

Did you personally have a say in the decision? D yes E no D can't remember

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