- Email: [email protected]
AIDS research—Whither community participation? Unsolved problems in a research programme in rural Uganda
Sot. Sci. Med. Vol. 34, No. 10, pp. 1089-1095, 1992 Printedin Great Britain.All rightsreserved
0277-9536192 $5.00 + 0.00 Copyright Q 1992 PcrgamonPressLtd
COMMUNITY-BASED HIV/AIDS RESEARCH-WHITHER COMMUNITY PARTICIPATION? UNSOLVED PROBLEMS IN A RESEARCH PROGRAMME IN RURAL UGANDA JANET A.
SEELEY,’JANE F.
KENGEYA-KAYONDO’
and DAAN W.
MULDER’
‘Medical Research Council Programme on AIDS
in Uganda, c/o Uganda Virus Research Institute, P.O. Box 49, Entebbe, Uganda and 2Uganda Virus Research Institute, P.O. Box 49, Entebbe, Uganda Abstract-Involvement of the study community in research on HIV/AIDS has presented the MRCjUVRI programme in rural Uganda with a multi-layered challenge. A typology developed in agricultural research which defines different levels of community participation in research is described where participation may be at ‘contract’, ‘consultative’, ‘collaborative’ and ‘collegiate’ level (each level indicating an increasing degree of community participation). Community involvement in the MRC/UVRI Programme is then outlined and the typology applied. It is shown that the majority of community participation in the Programme is at the contract level since the nature of the research programme as a ‘foreign imposition’ with ‘foreign goals’ has precluded the involvement of the community in much of the policy development and research planning. However, it is noted that as the Programme becomes more established in the area community influence grows and signs of community impact on policy and increased research inputs are beginning to be seen. The question is raised as to whether it is realistic to expect that externally imposed health research, particularly on sensitive topics, can ever be truly community participatory research. Key words-HIV/AIDS,
population-based
research, community participation,
INTRODUCTION
AN EXAMPLE FROM AGRICULTURAL RESEARCH
‘Community participation’ is a much used term in the population-based development and research literature. Indeed, over the past decade a consensus has evolved that participation is a necessary condition for the meaningful expansion of a people’s ability to manage their affairs, control their environment and improve their own welfare. Participation of the local people in projects for research and development that take place in their midst is an attractive idea, particularly for international donors wishing to get away from a developmentimposed-from-outside approach. Lip-service is now paid almost universally to the need for participation in development projects. One can take the example of housing development: in 1982 the “Training Programme for Community Participation in Human Settlements Improvement” [l] began, marking the recognition that there was a growing concern with providing settlements which suited the needs of the inhabitants and which had sustainable infrastructures. Participation implies a local autonomy in which communities discover their options, make choices and thereby enhance their ability to manage their own development. It is not difficult to realise that ‘genuine’ community participation will require new attitudes and behaviour amongst the staff of development agencies as well as in the participating communities. But is community participation solely the prerogative of development agencies? Is it a feasible approach for community-based research? SD.4 Y/IO-c
Uganda
Agricultural participation’
research can
as well as development participatory ology
has shown
be an expressed
research’
projects. has become
that ‘community aim The
in research
term
common
‘farmer termin-
in the last decade. Its origins lie with ‘farming systems research’, a methodology which adopts an holistic view of the farming enterprise, recognising that no crop grows in isolation, but is affected by many different factors, including labour availability, expenditure on inputs, and other crops grown. The agricultural research literature is littered with anecdotes about new technologies which have failed because the local people did not like them or did not have the time to be bothered with their care. Getting farmers to participate in the design and implementation of research and development has the aim of reducing such frustrations for both farmer and researcher. Not surprisingly the wide dissemination of the terms ‘community participation’ and ‘farmer participatory research’ has led to a dilution of their meaning and to the generation of a body of literature seeking precise definitions. Farmer participatory research can be. broadly described as putting strong emphasis on the involvement of farmers in the research process through their participation, collaboration and involvement, and the talking to farmers about their needs, problems and reactions to technology. But there has been a divergence of opinion over central issues such as at what level the farmer participates, what purpose
1089
JANETA. SEELEYet al.
1090
participation serves, and when it should take place in the research process. Ashby et al. [2] identified four modes of farmer participation, each mode distinguished by differences in objectives and organisational managerial arrangements required for implementation. The four are: 1. Contract: the scientists contract farmers to provide land or services; 2. Consultative: the scientists consult farmers about their problems and then develop solutions; 3. Collaborative: scientists and farmers coilaborate as partners in the research process; 4. Collegiate: scientists strengthen the independent informal research and development systems which exist in rural areas. When used to analyse various research projects (Merrill-Sands [3]) it was found that the typology highlights the role of local politicians, community representatives, and extension staff. Attention is also drawn to the dangers of bias in farmer selection, and the gaps in the process of participation. For agricultural research the arguments for involving the farmer in the research process have been stated by a wide range of practitioners. Indeed, one can now, when a project claims to use a ‘farming systems approach’, feel fairly confident in expecting community participation at some level in technology development. But what of health research? COMMUNITY PARTICIPATION HEALTH RESEARCH
IN
The reluctance by many medical specialists to accept that patients may wish to know details of diagnosis and participate in treatment decisions is well known to many non-medical persons. Similarly in the health development field Kelman [4] stated: The involvement of the ‘consumer’ in health services planning, organisation and delivery has in recent years gained increasing, although perhaps grudging, acceptance by health planners and providers, and by legislative and other groups
concerned with health affairs. This traditional distance of patient and medical practitioner exists also in the realms of health research. A farmer may now be respected as a person and research partner because her/his knowledge of the soil, the climate, the crops, etc. Can one expect Western medical research to be able to equally integrate the client population into research planning and implementation? The literature on community participation in health is again dominated by examples from development (Buchner [S], Katzenellenbogen [6], Kaseje [A, Rit’kin [8], Annet and Nickson (91 for example), while there is little from research. Community participation in the development of health services is a popular cause with policy makers, but it is also clear from the case
material that putting the idea into practice often proves complicated by community dynamics. Rifkin [ 101,for example, points out that although community participation has become a major plank in WHO’s Primary Health Care platform, comparatively little programme data have been collected which help to define its potentials and problems, so the same mistakes are made again and again. Nevertheless, as health service development is often a visible exercise because of the infrastructure and personnel which may be involved, the participation required can be relatively easily comprehended by a population eager for the development. Research, which often shows no visible signs of short term and perhaps even long term benefits, is far harder to explain, particularly to a population which equates ‘programme’ or ‘project’ with ‘development’. However, as with farmer participatory research, it can be argued that involving the community in health research may lead to ‘better’ research, research which is more appropriate and which uses to advantage the knowledge and resources of the study population. Involving the community under study is likely to be particularly important for research which is sensitive, or the motives of which could be called into question by the community. It is difficult to impose sensitive research from above; the community needs to understand and, perhaps ideally, to participate in the formulation and implementation of it. If the research is to be carried out for a long period of time in one community then the participation of the population becomes even more important. The rest of this paper is devoted to a discussion of a population-based HIV/AIDS research programme in Uganda, the Medical Research Council Research Programme on AIDS in Uganda. Using this example an attempt is made to describe the extent to which community participation in a sensitive, long-term research study has been achieved according to the four possible levels of participation outlined above. THE MRC RESEARCH PROGRAlMME IN UGANDA
ON AIDS
The Programme is a population-based research project. The primary aims are to study the dynamics of HIV-l transmission, the natural history of HIVassociated disease and strategies for AIDS control in a rural population. The research is based in a rural sub-county in Masaka District, South West Uganda. A cohort including the total population (10,400 subjects, all ages) of 15 neighbouring villages is being followed up for a projected duration of 5 years or more. THE STUDY
POPULATION
There are two political systems operating in the study area, as in the rest of Uganda. The National Resistance Movement Government established a five
Community-based
tiered system of administration based on elected councils and committees of citizens. The village council, or Resistance Council 1 (RCl) level, is made up of all residents, with an executive committee of nine members: Chairman, Vice-Chairman, Secretary General, Secretaries for Defence, for Information, for Finance, for Mobilization and Education, for Women, and for Youth. At the RC2 level, or parish, and at. the RC3 level, or subcounty, there are also nine member executive committees. The RC4 level is for municipalities or counties and the RC5 is the district level. Alongside the RC system is a parallel structure of appointed chiefs who act as administrators in the area. At times there is some uncertainty about which system has the jurisdiction in a particular situation. As far as the National Government is concerned, however, the RC system is the more important. The often conflicting mix of Christianity and Islam has long been a complicating factor in the social organisation of Uganda. In the study area the community is predominantly Roman Catholic (65%) but 25% of the population are Muslims, and about 10% protestants (Church of Uganda, Baptist, Pentecostal and Seventh Day Adventist). The majority of the population are Baganda, but there is a large representation of immigrants from Rwanda and Burundi who have tended to settle, over the last 70 years, on land at the outskirts of established villages. The following tribal groups have been recorded during the baseline survey in the study area: Baganda, Bakiga, Batooro, Basese, Banyankole, Basoga, Rwandese, Barundi, Bafunbira and Banyanjiro. The Baganda account for 50%, the Rwandese/Barundi for 20%. Fifty-five percent of the population are under 15, and the ratio of females to males for the total population is roughly 1.2 : 1. The main occupation of people in the area is that of subsistence farmer or cash crop cultivator. Most people have less than 5 acres of land on which they grow the subsistence staple, matooke (plantain), and beans or coffee for sale. Within the villages there are only a few sizeable land owners and relatively few households which are landless. No community is homogeneous, and as illustrated in the profile above, the population in the study area of the MRC Programme is no exception. This diversity is one of the obstacles which the Programme has encountered in its endeavours to involve ‘the community’ in the process of planning and implementing research. THE MRC RESEARCH PROGRAMME’S EXPERIENCE COMMUNITY INVOLVEMENT IN THE RESEARCH
OF
The Programme, by its funding and management structure, is an externally designed and imposed research programme. The Programme is not a development project, it is a research programme with aims and objectives beyond the bounds of the subcounty.
HIV/AIDS
research
1091
As such the world view of the study population can only to a limited extent influence the direction of research. The initiative for the research and the research design came from outside. Thus, the community involvement which we can consider is that which has taken place during the implementation of the research strategy. The Programme was set up by the British Govemment at the request of the Ugandan Government. The place of study was selected by Ugandan Government officials in cooperation with the MRC and Masaka District Health officials who proposed suitable subcounties for the research. In November 1988 the Programme made the final selection based on criteria which included accessibility, health facilities available in the area and community record for participation in health or development programmes in the past. The first members of the community to be involved in the Programme were the political leaders. These leaders took an active part in finding accommodation for the Programme and recruiting local staff. One of their number became a fulltime Programme employee, working as Community Liaison Officer. He played an important role, with a non-local Ugandan mobilizer, in the intensive mobilization campaign which began in the middle of 1989 and was aimed at informing the population about the Programme. This campaign consisted of a series of village meetings where communities were addressed by Programme staff, including the Community Liaison Officer. Phase one of the Programme consisted of a baseline survey of the study area with ethno-demographic, health examination and serological components. In preparation for this four local young men were recruited to map the study area, indicating each household on the map and numbering it. Next, members of the local community were invited through the existing political structure to indicate their interest in working as interviewers for the survey. Fifty were trained in the use of the questionnaires and basic knowledge of HIV/AIDS, of whom 25 were selected. Field office staff were recruited in the same manner. The medical team was largely recruited from outside the study area, despite efforts to recruit locally (later attempts were more successful, with 3 local nurses joining the team at the beginning of 1990). However, 2 secondary school leavers were recruited from the study area and were trained as assistant field technicians. The baseline survey, covering 15 villages, lasted 8 months. During that time the local interviewers were responsible for administering a household questionnaire to all household heads and an individual questionnaire for all persons over 12 years. The medical team then followed with a medical questionnaire, medical examination and, if consent was obtained, taking a blood sample from all individuals regardless of age. The local interviewers played an important role as intermediaries between the Programme and the
1092
JAI-XT A. SEELEY et al.
local communities. They provided feedback on the response to the survey in the villages. They were able, for example, to report on misgivings people had about the blood samples. Some took on the role of ad hoc mobilizers, informing their neighbours and fellow villagers about the aims of the Programme and the meaning of the survey. After one particularly difficult survey period, when more questions about the reasons for the survey were being raised than was usually the case, and the non-local mobilizers were overstretched, it was agreed with some of the interviewers that they would formally become ‘mobilizers’. In their new role as local mobilizers they accompanied the survey teams to inform members of the public who were uncertain about what was intended. At the completion of the baseline survey the local staff were redeployed: 5 as census takers (for the second and then subsequent annual rounds of the survey), 9 as qualitative data collectors for the social science section, 3 as home visitors to approach participants enrolled for clinical studies and the rest as mobilizers. Late in 1989 the Programme started to develop a counselling capacity in close collaboration with The AIDS Support Organisation (TASO) (Kampala and Masaka) and Kitovu Hospital, Masaka. The purpose of this service was to provide community counselling, intended to assist communities in coping better with the HIV and AIDS epidemics, and individual counselling, in the form of information and support to those individuals who, as a result of having their blood sample taken, wished to know their HIV status. A counsellor was recruited from outside the study area to take charge of the counselling activities. Seventy local people came forward for training as local counsellors. Seven of these were chosen after the training to assist the senior counsellor. Of the rest, the majority were appointed as voluntary ‘community HIV/AIDS Information Personnel’ to work in their own villages as the source of information and, when necessary, support. Among the 70 trainees those who were teachers formed themselves into a Teachers’ Working Committee and began to work on how to spread information about health and HIV/AIDS in the 29 schools in the study area. A result of their activities was an interschool drama and song competition, with the theme of HIV/AIDS, followed by health education songs and drama concerts at each participating school for parents and local community. As a means of reaching the youth the local leaders pressed for a Programme football and netball tournament, at which health education talks were given at the matches. This tournament has since developed into an inter-village league. At the request of local women, a women’s group was formed, initially to provide a forum for them to learn about HIV and AIDS. Later it became a forum for discussions on what could be done in their villages to prevent the spread of the epidemic and for teaching
on more general health education issues. The women also learnt health education songs and practised plays which have been shown at local and district level functions. In December 1989 the Programme took the initiative to establish a local Health Advisory Committee (HAC) partly in response to requests by community leaders in the study area to be more involved in discussions on Programme policy. Members of the Committee are political, religious and traditional medical leaders. Discussions with this Committee cover a variety of problems related to the development and implementation of Programme activities: counselling issues, community participation, AIDS control approaches, and improvement of health services. The Committee has an informal advisory capacity, but it also provides a point of liaison with some sectors of the community. Indeed, one of the intentions behind the formation of this committee was to ensure that knowledge about what the Programme is and is not going to do becomes more widely disseminated. Community requests for development assistance have led to Programme assistance with the activities of a joint District/UNICEF ‘spring protection’ water project. In addition the Programme has provided logistical support to Government Health facilities in the area and is implementing a CommunityBased Health Care Programme. Because of the growth in the ‘community development’ component of the Programme a non-local Ugandan ‘Community Development Coordinator’ was appointed in early 1991. After the baseline survey the villages participating in the survey received ‘debriefing booklets’ summarizing basic demographic and health-related facts about the villages. These booklets (in Luganda) were introduced by Programme staff at community meetings. Pamphlets, in Luganda, on the Programme activities are distributed in the villages at the time of the annual re-survey. These aim to clarify the studies being undertaken and, in particular, the treatment facilities available from the Programme for sexually transmitted diseases.
WHICH
COMIMUNITY
PARTICIPATES?
The profile of the community, given above, shows that the study population is made up of a mixture of ethnic, religious and economic groups. The question may be raised as to whether all of these groups participate. The answer is that they do not. The ‘community solidarity’ that so aided participation in a health project in Nicaragua, described by Saraceno [ 1I], does not exist. As will be clear from the account of the recruitment into the Programme, much has depended upon the existing political structures. Those outside this structure were not, at least initially, likely to be included.
Community-based
There have been a number of examples which illustrate the difficulty of involving the whole community. The recruitment of local interviewers was, as pointed out above, done through the political structure. It became clear when looking at the social networks of the interviewers that most were in some position of political power in their village, or were related to someone who was. Because many of the main actors in the political structure of the area were Roman Catholics, measures had to be taken by the Programme staff to attract Protestants and Muslims to come forward to train as counsellors and to ensure their participation on the Health Advisory Committee. One section of the political hierarchy felt that they were left out of participation in committees and mobilisation. In protest some of their members actively pursued a campaign to obstruct the baseline survey. Meetings between them and Programme staff, and their recruitment into the mobilisation structure, quickly reversed this situation. Unfortunately this episode and the solution resulted in other sectors of the community suggesting that they should obstruct some Programme activities in order to gain positions in the Programme staff. Additional efforts were necessary to involve the Rwandese communities lest the Programme activities would follow the local pattern of marginalising these groups from community political and social activities. The economic benefits which those who are employed by the Programme receive are the subject of some envy within the community. This ‘envy’ has also manifested itself in the regions surrounding the study area. Neighbouring villages have protested at being left out. There is, not unnaturally, competition between community members for the economic benefits derived from the Programme. One local leader offered his house for rent to the Programme with the words “why shouldn’t I also eat from the MRC?“. Some people complain that the locally employed staff are ‘growing fat’ at the expense of the rest of the community. Local interviewers in one village were even met with refusals because it was thought that they were paid per questionnaire and the villagers did not want to boost the interviewers’ income. Initially the Programme had a ‘Community Fund’ which was intended as a thank you to the villages for their participation which, it was hoped, each village would spend on some development for their members. However, divisions within the community were thrown into relief in the discussion over how to use this fund. There were nearly as many views on how to spend the money as there were people, and not surprisingly a number of the ideas revolved around benefits for specific persons or groups rather than villages as a whole. Consequently it was decided, in consultation with the RC3 and other community leaders, to designate the fund for development schemes, such as the protection of springs and the community-based health programme, which would
HIV/AIDS research
1093
reach a broad cross-section of people in the subcounty. Richards [12] recounts the comments by Government officials on the Baganda that “you feel you are dealing with a set of individuals and not a community”. This feeling is notable in the study area. Older people claim that it is a new feeling and point to examples of the community working together in the repair of a road in the area. However, those not participating were fined as they passed. Other projects have faced and face similar problems because of the lack of organizational structures. UNICEF [13] notes the reliance on interpersonal contact as a basis for a Ugandan AIDS communication strategy because of the weakness of organizational structures in many areas. CLASSIFICATION
OF PARTICIPATION
Having described some of the ways in which members of the community are involved in the Programme in the sub-county it is now possible to use the typology developed for farming systems research in an attempt to define the level of participation which is taking place in each case. If one looks at the ‘contract’ level of participation it is apparent that for both medical and social indepth studies and surveys, the Programme’s ‘contract’ with the survey village populations rests with their consent to participate, repeatedly, in the yearly survey rounds. In addition, the Programme has a contract with the local people who have been employed by the Programme. Originally many of them were contracted for the purposes of the survey and drawing up the cohort for the clinical studies. Participation of the community approached the ‘consultative’ level in the socioeconomic survey by using local people as interviewers and mobilizers, which provided some feedback on questionnaire content and the impact of the study. Since the baseline survey three of the women interviewers and one of the men have become involved in designing and implementing focused social research projects of interest to them: one being the position of orphans in the villages and another on attitudes and beliefs about sexual behaviour. In an effort to find more ways to involve more sections of the population in a ‘consultative’ role, and in order to strengthen the ‘contract’ and gain a greater acceptance of the Programme objectives, early in the second round Programme medical and social research staff met on a regular basis with the mobilizers to discuss the ‘strategy’ for the census and medical survey in each village: key people to contact and involve so that all groups could be contacted. It can be claimed that a ‘consultative’ level is achieved with some local leaders through the meetings with the RC3 and the Health Advisory Committee. These opinion formers have a role as consultants, but not as decision makers. Like the
1094
JANETA. SEELEYet al.
local interviewers and mobilizers and the community liaison officer, the RCs and the members of the HAC make suggestions for Programme implementation, they do not make decisions. Consultation, as the Programme stays in the area, becomes more feasible with the broader community through feedback from community meetings and the interaction with the community of programme personnel. One example is a community request that the Programme undertake malaria research in addition to the work of HIV/AIDS and sexually transmitted diseases since this is viewed as a big health problem in the area. This, in mid 1991, the Programme has begun to do. ‘Consultation in the implementation of the Community Based Health Care strategy, has proved necessary in order that the development is sustainable. But the initiative for the CBHC has come from outside, and the challenge will be to enable the population to become collaborators in its implementation rather than passive recipients of another new, imposed, idea. The ‘collaborative’ level has only been achieved to a very limited extent. One of the local women interviewers, for example, has been a key ‘collaborator’ in the study on sexual behaviour organizing informal interviews and facilitating focus group discussions using questions formulated in women’s group meetings. As yet, the Programme has no examples of community participation at the ‘collegiate’ level. BENEFITS
TO THE COIMMUNITY
At this stage it is difficult to assess the benefits of community involvement in the Programme activities for the community itself (or communities themselves). However, a few positive achievements can be appreciated, the most obvious being the salaries and allowances of the many local people who work for the Programme. Funds have also been designated for ‘community development’, intended as an appreciation for cooperation and participation in the research. Community involvement in the Programme has helped to bring groups of people together and create discussion fora that would not normally exist. The Health Advisory Committee is a case in point. There has also been a mushrooming of women’s groups organised on a parish level, who seek assistance from the Programme staff on health education and home/ agricultural development (which the Community Development Coordinator is able to provide). At these various meetings members of the community can share and exchange ideas and experiences. To a limited extent the Programme has been able to improve the health services in the area through assistance afforded to Government health units and the more specialised services available for referred patients (from the health units or from the medical
survey team working in the villages) at the study clinic and laboratory. BENEFITS
TO THE PROGRAIMME
Some of the benefits to the Programme of community involvement have already been mentioned. By involving the community local knowledge and experience have been integrated into the research planning, for example, in the modification of the questionnaire and focused study checklists. Local mobilizers have been able to approach their communities in ways not readily open to outsiders to explain the Programme. The prejudices and fears raised by the Programme are, in the Programme’s experience, dealt with most effectively by someone from within the community who understands the way local people think. Indeed, the rationale behind training so many people as counsellors was to enable as many people as possible to have the correct information about HIV/AIDS which they could then use in their own communities. The support of the local political structure, and religious leaders has meant that when difficult decisions need to be made, a body of people, knowledgeable about the Programme, exists to give advice. This has been particularly valuable when issues involving local politics have been raised, which would be a quagmire for the unwitting outsider. THE DRAWBACKS
OF COMMUNITY
INVOLVEMENT
When one views the MRC Programme as an externally imposed research programme, with aims and objectives beyond the area of study, the involvement of the community could be seen as a drawback because it slows the pace of research. By employing local people, rather than bringing in teams of interviewers from outside, the Programme has been committed to a lengthy period of community preparation and training which is repeated for each new study. There has to be a great deal of repetition of research information for employees in order to achieve reasonable levels of performance. It is easy for aims and objectives to be misunderstood particularly when dealing with a sensitive area of research. There is the danger that the Programme would benefit at the expense of the community and draw people away from tasks of direct benefit to the villages. For example, local services like teaching could have suffered loss of staff had it not been foreseen and guarded against. Teachers were preferring programme employment to teaching. One way in which the teachers can be involved without taking them out of the schools is through the teachers’ working committee where they work on health education in their schools. Some individuals or groups employed directly by the Programme have been identified more and more as programme employees and alienation by the community was observed. This has been the case for the
Community-based
Community Liaison Officer who has ceased to hold the political sway in the area which he obviously had when he was an RC3 member. This devalued his role in the Programme. However, working with the Programme for others has heightened their political and social profile and led to promotion. Four RCl executive members, who were Programme employees, have been elected to the RC2 level in their parishes. Although local interviewers, census takers and mobilizers are excellent at their work they have tended to carry their local biases, beliefs and prejudices particularly for religious and immigrant status. It has been Programme policy not to use local people for sensitive data collection from individuals, or giving of confidential information, like a person’s HIV status. Outsiders are used for such discussions as HIV/AIDS still remains a stigmatized condition.
HIV/AIDS research
and is genuinely convinced that the long-term outcome of the research will be beneficial. One objective of the Programme in involving the community lies in the hope that the community’s involvement will be sustained beyond the Programme and that through it a community-based response to HIV/AIDS will be generated. HIV/AIDS research requires a cultural sensitivity and community intimacy unparalleled in other health research challenges. Acknowledgements-The
authors are grateful to the Programme staff, and in particular the local community, for their contribution to this paper. The suggestions and comments made on earlier drafts of this paper by Dr Tom Barton and two anonymous reviewers are gratefully acknowledged. The Director, Uganda Virus Research Institute, and Director, AIDS Control Programme are thanked for their support and for permission to publish this article. REFERENCES
CONCLUSION
The interaction with the community in communitybased research is a complex process. It is all the more complex when an external research body endeavours to undertake research on a topic which is highly sensitive, such as HIV/AIDS, which is surrounded by considerable anxiety and fear. It takes time to understand the power structures within the population; initial impressions can easily be misleading, wrong paths may be pursued, and parts of the community alienated. Community participation is considered by many to be essential. Through our experience with the implementation of the MRC Programme we have learnt that it may be an idealized objective which we have only managed to realise in a very limited way. When one considers the four modes of community participation described above by Ashby er al. [2] it is clear that little of the community involvement in the MRC Programme goes beyond the contract level. The community has had a small impact on policy development through the introduction of the malaria research component. Over time local leaders have become more aware of broader benefits of the Programme (improvements in health services over the long term for example) and keener to be part of the implementation. Gradually locally employed staff are gaining the confidence to suggest topics for research and to organise projects themselves (as in the case with the women in the social research). In contrast to the ‘ideal’ community participatory approach where the a priori goals are determined by the community itself, the MRC Programme established the goals, the aims and the objectives of the research. Thus it has been for the community, after accepting the presence of the Programme in the area, to look for ways to benefit from its presence. Participation beyond the level of ‘the contract’ will only increase once the community has gained confidence
10%
I. United Nations Centre for Human Settlements Community Participation for Improving Human Settlements.
UNCHS, Nairobi, 1983. 2. Ashby J. A., Quiros C. A. and Rivera Y. M. Farmer participation in on-farm varietal trials. Agricultural Administration (Research and Extension) Network Discussion Paper 22, ODI, London, 1987. 3. Merrill-Sands D., Biggs S. D., Kean S., Poats S., McAllister J., Moscardi E. and Ruando S. Methodology for the INSAR Study on the Organisation and Management of On-Farm Research. ISNAR, The Hague, 1986.
4. Kelman H. R. Evaluation of health care quality by consumers. Inf. J. Hlth Services 6, 431-441, 1976. 5. Buchner D. M. and Pearson D. C. Factors associated with participation in a community senior health promotion programme: a pilot study. Am. J. Pub/. Hlrh 79,(6), 775-177,
1989.
6. Katzenellenbogen J. M., Pick W. M., Hoffman M. and Weir G. Community participation in the Mamre Community Health Project. S. A/i. Med. J. 74,(7), 335-338,
1987.
7. Kaseje D. C., Sempebwa E. K. and Spencer H. C. Community leadership and participation in the Saradidi, Kenya, rural health development programme. Annls irop. Med. Parasit. 81, Suppl. 1, 46-55, 1987. 8. Rikin S. B. Communiry Participation in Maternal and Child Health Family Planning Programmes. An Analysis Based on Case Smdy Materials. WHO. Geneva,
1990. 9. Annet H. and Nickson P. J. Community involvement in health: why is it necessary? Trap. Docror 21, 3-5, 1991. 10. Rifkin S. B. Primary health care in Southeast Asia: attitudes about community participation in community health programmes. Sot. Sci. Med. 17, 1489-1496, 1983.
11. Saraceno B., Briceno R. A., Asioli F., Liberati A. and Tognono G. Cooperation in Mental Health: an Italian Project in Nicaragua. Sot. Sci. Med. 31, 1067-1071,
1990.
12. Richards A. I. The Changing Structure of a Ganda Village Kisozi 1892-1952. East African Publishing House, Nairobi, 1966. 13. UNICEF UNICEF response to AIDS in Uganda. Expanded communications programme Draft Plan of Operations. UNICEF,
1991.
1991-1995,
Kampala,
0277-9536192 $5.00 + 0.00 Copyright Q 1992 PcrgamonPressLtd
COMMUNITY-BASED HIV/AIDS RESEARCH-WHITHER COMMUNITY PARTICIPATION? UNSOLVED PROBLEMS IN A RESEARCH PROGRAMME IN RURAL UGANDA JANET A.
SEELEY,’JANE F.
KENGEYA-KAYONDO’
and DAAN W.
MULDER’
‘Medical Research Council Programme on AIDS
in Uganda, c/o Uganda Virus Research Institute, P.O. Box 49, Entebbe, Uganda and 2Uganda Virus Research Institute, P.O. Box 49, Entebbe, Uganda Abstract-Involvement of the study community in research on HIV/AIDS has presented the MRCjUVRI programme in rural Uganda with a multi-layered challenge. A typology developed in agricultural research which defines different levels of community participation in research is described where participation may be at ‘contract’, ‘consultative’, ‘collaborative’ and ‘collegiate’ level (each level indicating an increasing degree of community participation). Community involvement in the MRC/UVRI Programme is then outlined and the typology applied. It is shown that the majority of community participation in the Programme is at the contract level since the nature of the research programme as a ‘foreign imposition’ with ‘foreign goals’ has precluded the involvement of the community in much of the policy development and research planning. However, it is noted that as the Programme becomes more established in the area community influence grows and signs of community impact on policy and increased research inputs are beginning to be seen. The question is raised as to whether it is realistic to expect that externally imposed health research, particularly on sensitive topics, can ever be truly community participatory research. Key words-HIV/AIDS,
population-based
research, community participation,
INTRODUCTION
AN EXAMPLE FROM AGRICULTURAL RESEARCH
‘Community participation’ is a much used term in the population-based development and research literature. Indeed, over the past decade a consensus has evolved that participation is a necessary condition for the meaningful expansion of a people’s ability to manage their affairs, control their environment and improve their own welfare. Participation of the local people in projects for research and development that take place in their midst is an attractive idea, particularly for international donors wishing to get away from a developmentimposed-from-outside approach. Lip-service is now paid almost universally to the need for participation in development projects. One can take the example of housing development: in 1982 the “Training Programme for Community Participation in Human Settlements Improvement” [l] began, marking the recognition that there was a growing concern with providing settlements which suited the needs of the inhabitants and which had sustainable infrastructures. Participation implies a local autonomy in which communities discover their options, make choices and thereby enhance their ability to manage their own development. It is not difficult to realise that ‘genuine’ community participation will require new attitudes and behaviour amongst the staff of development agencies as well as in the participating communities. But is community participation solely the prerogative of development agencies? Is it a feasible approach for community-based research? SD.4 Y/IO-c
Uganda
Agricultural participation’
research can
as well as development participatory ology
has shown
be an expressed
research’
projects. has become
that ‘community aim The
in research
term
common
‘farmer termin-
in the last decade. Its origins lie with ‘farming systems research’, a methodology which adopts an holistic view of the farming enterprise, recognising that no crop grows in isolation, but is affected by many different factors, including labour availability, expenditure on inputs, and other crops grown. The agricultural research literature is littered with anecdotes about new technologies which have failed because the local people did not like them or did not have the time to be bothered with their care. Getting farmers to participate in the design and implementation of research and development has the aim of reducing such frustrations for both farmer and researcher. Not surprisingly the wide dissemination of the terms ‘community participation’ and ‘farmer participatory research’ has led to a dilution of their meaning and to the generation of a body of literature seeking precise definitions. Farmer participatory research can be. broadly described as putting strong emphasis on the involvement of farmers in the research process through their participation, collaboration and involvement, and the talking to farmers about their needs, problems and reactions to technology. But there has been a divergence of opinion over central issues such as at what level the farmer participates, what purpose
1089
JANETA. SEELEYet al.
1090
participation serves, and when it should take place in the research process. Ashby et al. [2] identified four modes of farmer participation, each mode distinguished by differences in objectives and organisational managerial arrangements required for implementation. The four are: 1. Contract: the scientists contract farmers to provide land or services; 2. Consultative: the scientists consult farmers about their problems and then develop solutions; 3. Collaborative: scientists and farmers coilaborate as partners in the research process; 4. Collegiate: scientists strengthen the independent informal research and development systems which exist in rural areas. When used to analyse various research projects (Merrill-Sands [3]) it was found that the typology highlights the role of local politicians, community representatives, and extension staff. Attention is also drawn to the dangers of bias in farmer selection, and the gaps in the process of participation. For agricultural research the arguments for involving the farmer in the research process have been stated by a wide range of practitioners. Indeed, one can now, when a project claims to use a ‘farming systems approach’, feel fairly confident in expecting community participation at some level in technology development. But what of health research? COMMUNITY PARTICIPATION HEALTH RESEARCH
IN
The reluctance by many medical specialists to accept that patients may wish to know details of diagnosis and participate in treatment decisions is well known to many non-medical persons. Similarly in the health development field Kelman [4] stated: The involvement of the ‘consumer’ in health services planning, organisation and delivery has in recent years gained increasing, although perhaps grudging, acceptance by health planners and providers, and by legislative and other groups
concerned with health affairs. This traditional distance of patient and medical practitioner exists also in the realms of health research. A farmer may now be respected as a person and research partner because her/his knowledge of the soil, the climate, the crops, etc. Can one expect Western medical research to be able to equally integrate the client population into research planning and implementation? The literature on community participation in health is again dominated by examples from development (Buchner [S], Katzenellenbogen [6], Kaseje [A, Rit’kin [8], Annet and Nickson (91 for example), while there is little from research. Community participation in the development of health services is a popular cause with policy makers, but it is also clear from the case
material that putting the idea into practice often proves complicated by community dynamics. Rifkin [ 101,for example, points out that although community participation has become a major plank in WHO’s Primary Health Care platform, comparatively little programme data have been collected which help to define its potentials and problems, so the same mistakes are made again and again. Nevertheless, as health service development is often a visible exercise because of the infrastructure and personnel which may be involved, the participation required can be relatively easily comprehended by a population eager for the development. Research, which often shows no visible signs of short term and perhaps even long term benefits, is far harder to explain, particularly to a population which equates ‘programme’ or ‘project’ with ‘development’. However, as with farmer participatory research, it can be argued that involving the community in health research may lead to ‘better’ research, research which is more appropriate and which uses to advantage the knowledge and resources of the study population. Involving the community under study is likely to be particularly important for research which is sensitive, or the motives of which could be called into question by the community. It is difficult to impose sensitive research from above; the community needs to understand and, perhaps ideally, to participate in the formulation and implementation of it. If the research is to be carried out for a long period of time in one community then the participation of the population becomes even more important. The rest of this paper is devoted to a discussion of a population-based HIV/AIDS research programme in Uganda, the Medical Research Council Research Programme on AIDS in Uganda. Using this example an attempt is made to describe the extent to which community participation in a sensitive, long-term research study has been achieved according to the four possible levels of participation outlined above. THE MRC RESEARCH PROGRAlMME IN UGANDA
ON AIDS
The Programme is a population-based research project. The primary aims are to study the dynamics of HIV-l transmission, the natural history of HIVassociated disease and strategies for AIDS control in a rural population. The research is based in a rural sub-county in Masaka District, South West Uganda. A cohort including the total population (10,400 subjects, all ages) of 15 neighbouring villages is being followed up for a projected duration of 5 years or more. THE STUDY
POPULATION
There are two political systems operating in the study area, as in the rest of Uganda. The National Resistance Movement Government established a five
Community-based
tiered system of administration based on elected councils and committees of citizens. The village council, or Resistance Council 1 (RCl) level, is made up of all residents, with an executive committee of nine members: Chairman, Vice-Chairman, Secretary General, Secretaries for Defence, for Information, for Finance, for Mobilization and Education, for Women, and for Youth. At the RC2 level, or parish, and at. the RC3 level, or subcounty, there are also nine member executive committees. The RC4 level is for municipalities or counties and the RC5 is the district level. Alongside the RC system is a parallel structure of appointed chiefs who act as administrators in the area. At times there is some uncertainty about which system has the jurisdiction in a particular situation. As far as the National Government is concerned, however, the RC system is the more important. The often conflicting mix of Christianity and Islam has long been a complicating factor in the social organisation of Uganda. In the study area the community is predominantly Roman Catholic (65%) but 25% of the population are Muslims, and about 10% protestants (Church of Uganda, Baptist, Pentecostal and Seventh Day Adventist). The majority of the population are Baganda, but there is a large representation of immigrants from Rwanda and Burundi who have tended to settle, over the last 70 years, on land at the outskirts of established villages. The following tribal groups have been recorded during the baseline survey in the study area: Baganda, Bakiga, Batooro, Basese, Banyankole, Basoga, Rwandese, Barundi, Bafunbira and Banyanjiro. The Baganda account for 50%, the Rwandese/Barundi for 20%. Fifty-five percent of the population are under 15, and the ratio of females to males for the total population is roughly 1.2 : 1. The main occupation of people in the area is that of subsistence farmer or cash crop cultivator. Most people have less than 5 acres of land on which they grow the subsistence staple, matooke (plantain), and beans or coffee for sale. Within the villages there are only a few sizeable land owners and relatively few households which are landless. No community is homogeneous, and as illustrated in the profile above, the population in the study area of the MRC Programme is no exception. This diversity is one of the obstacles which the Programme has encountered in its endeavours to involve ‘the community’ in the process of planning and implementing research. THE MRC RESEARCH PROGRAMME’S EXPERIENCE COMMUNITY INVOLVEMENT IN THE RESEARCH
OF
The Programme, by its funding and management structure, is an externally designed and imposed research programme. The Programme is not a development project, it is a research programme with aims and objectives beyond the bounds of the subcounty.
HIV/AIDS
research
1091
As such the world view of the study population can only to a limited extent influence the direction of research. The initiative for the research and the research design came from outside. Thus, the community involvement which we can consider is that which has taken place during the implementation of the research strategy. The Programme was set up by the British Govemment at the request of the Ugandan Government. The place of study was selected by Ugandan Government officials in cooperation with the MRC and Masaka District Health officials who proposed suitable subcounties for the research. In November 1988 the Programme made the final selection based on criteria which included accessibility, health facilities available in the area and community record for participation in health or development programmes in the past. The first members of the community to be involved in the Programme were the political leaders. These leaders took an active part in finding accommodation for the Programme and recruiting local staff. One of their number became a fulltime Programme employee, working as Community Liaison Officer. He played an important role, with a non-local Ugandan mobilizer, in the intensive mobilization campaign which began in the middle of 1989 and was aimed at informing the population about the Programme. This campaign consisted of a series of village meetings where communities were addressed by Programme staff, including the Community Liaison Officer. Phase one of the Programme consisted of a baseline survey of the study area with ethno-demographic, health examination and serological components. In preparation for this four local young men were recruited to map the study area, indicating each household on the map and numbering it. Next, members of the local community were invited through the existing political structure to indicate their interest in working as interviewers for the survey. Fifty were trained in the use of the questionnaires and basic knowledge of HIV/AIDS, of whom 25 were selected. Field office staff were recruited in the same manner. The medical team was largely recruited from outside the study area, despite efforts to recruit locally (later attempts were more successful, with 3 local nurses joining the team at the beginning of 1990). However, 2 secondary school leavers were recruited from the study area and were trained as assistant field technicians. The baseline survey, covering 15 villages, lasted 8 months. During that time the local interviewers were responsible for administering a household questionnaire to all household heads and an individual questionnaire for all persons over 12 years. The medical team then followed with a medical questionnaire, medical examination and, if consent was obtained, taking a blood sample from all individuals regardless of age. The local interviewers played an important role as intermediaries between the Programme and the
1092
JAI-XT A. SEELEY et al.
local communities. They provided feedback on the response to the survey in the villages. They were able, for example, to report on misgivings people had about the blood samples. Some took on the role of ad hoc mobilizers, informing their neighbours and fellow villagers about the aims of the Programme and the meaning of the survey. After one particularly difficult survey period, when more questions about the reasons for the survey were being raised than was usually the case, and the non-local mobilizers were overstretched, it was agreed with some of the interviewers that they would formally become ‘mobilizers’. In their new role as local mobilizers they accompanied the survey teams to inform members of the public who were uncertain about what was intended. At the completion of the baseline survey the local staff were redeployed: 5 as census takers (for the second and then subsequent annual rounds of the survey), 9 as qualitative data collectors for the social science section, 3 as home visitors to approach participants enrolled for clinical studies and the rest as mobilizers. Late in 1989 the Programme started to develop a counselling capacity in close collaboration with The AIDS Support Organisation (TASO) (Kampala and Masaka) and Kitovu Hospital, Masaka. The purpose of this service was to provide community counselling, intended to assist communities in coping better with the HIV and AIDS epidemics, and individual counselling, in the form of information and support to those individuals who, as a result of having their blood sample taken, wished to know their HIV status. A counsellor was recruited from outside the study area to take charge of the counselling activities. Seventy local people came forward for training as local counsellors. Seven of these were chosen after the training to assist the senior counsellor. Of the rest, the majority were appointed as voluntary ‘community HIV/AIDS Information Personnel’ to work in their own villages as the source of information and, when necessary, support. Among the 70 trainees those who were teachers formed themselves into a Teachers’ Working Committee and began to work on how to spread information about health and HIV/AIDS in the 29 schools in the study area. A result of their activities was an interschool drama and song competition, with the theme of HIV/AIDS, followed by health education songs and drama concerts at each participating school for parents and local community. As a means of reaching the youth the local leaders pressed for a Programme football and netball tournament, at which health education talks were given at the matches. This tournament has since developed into an inter-village league. At the request of local women, a women’s group was formed, initially to provide a forum for them to learn about HIV and AIDS. Later it became a forum for discussions on what could be done in their villages to prevent the spread of the epidemic and for teaching
on more general health education issues. The women also learnt health education songs and practised plays which have been shown at local and district level functions. In December 1989 the Programme took the initiative to establish a local Health Advisory Committee (HAC) partly in response to requests by community leaders in the study area to be more involved in discussions on Programme policy. Members of the Committee are political, religious and traditional medical leaders. Discussions with this Committee cover a variety of problems related to the development and implementation of Programme activities: counselling issues, community participation, AIDS control approaches, and improvement of health services. The Committee has an informal advisory capacity, but it also provides a point of liaison with some sectors of the community. Indeed, one of the intentions behind the formation of this committee was to ensure that knowledge about what the Programme is and is not going to do becomes more widely disseminated. Community requests for development assistance have led to Programme assistance with the activities of a joint District/UNICEF ‘spring protection’ water project. In addition the Programme has provided logistical support to Government Health facilities in the area and is implementing a CommunityBased Health Care Programme. Because of the growth in the ‘community development’ component of the Programme a non-local Ugandan ‘Community Development Coordinator’ was appointed in early 1991. After the baseline survey the villages participating in the survey received ‘debriefing booklets’ summarizing basic demographic and health-related facts about the villages. These booklets (in Luganda) were introduced by Programme staff at community meetings. Pamphlets, in Luganda, on the Programme activities are distributed in the villages at the time of the annual re-survey. These aim to clarify the studies being undertaken and, in particular, the treatment facilities available from the Programme for sexually transmitted diseases.
WHICH
COMIMUNITY
PARTICIPATES?
The profile of the community, given above, shows that the study population is made up of a mixture of ethnic, religious and economic groups. The question may be raised as to whether all of these groups participate. The answer is that they do not. The ‘community solidarity’ that so aided participation in a health project in Nicaragua, described by Saraceno [ 1I], does not exist. As will be clear from the account of the recruitment into the Programme, much has depended upon the existing political structures. Those outside this structure were not, at least initially, likely to be included.
Community-based
There have been a number of examples which illustrate the difficulty of involving the whole community. The recruitment of local interviewers was, as pointed out above, done through the political structure. It became clear when looking at the social networks of the interviewers that most were in some position of political power in their village, or were related to someone who was. Because many of the main actors in the political structure of the area were Roman Catholics, measures had to be taken by the Programme staff to attract Protestants and Muslims to come forward to train as counsellors and to ensure their participation on the Health Advisory Committee. One section of the political hierarchy felt that they were left out of participation in committees and mobilisation. In protest some of their members actively pursued a campaign to obstruct the baseline survey. Meetings between them and Programme staff, and their recruitment into the mobilisation structure, quickly reversed this situation. Unfortunately this episode and the solution resulted in other sectors of the community suggesting that they should obstruct some Programme activities in order to gain positions in the Programme staff. Additional efforts were necessary to involve the Rwandese communities lest the Programme activities would follow the local pattern of marginalising these groups from community political and social activities. The economic benefits which those who are employed by the Programme receive are the subject of some envy within the community. This ‘envy’ has also manifested itself in the regions surrounding the study area. Neighbouring villages have protested at being left out. There is, not unnaturally, competition between community members for the economic benefits derived from the Programme. One local leader offered his house for rent to the Programme with the words “why shouldn’t I also eat from the MRC?“. Some people complain that the locally employed staff are ‘growing fat’ at the expense of the rest of the community. Local interviewers in one village were even met with refusals because it was thought that they were paid per questionnaire and the villagers did not want to boost the interviewers’ income. Initially the Programme had a ‘Community Fund’ which was intended as a thank you to the villages for their participation which, it was hoped, each village would spend on some development for their members. However, divisions within the community were thrown into relief in the discussion over how to use this fund. There were nearly as many views on how to spend the money as there were people, and not surprisingly a number of the ideas revolved around benefits for specific persons or groups rather than villages as a whole. Consequently it was decided, in consultation with the RC3 and other community leaders, to designate the fund for development schemes, such as the protection of springs and the community-based health programme, which would
HIV/AIDS research
1093
reach a broad cross-section of people in the subcounty. Richards [12] recounts the comments by Government officials on the Baganda that “you feel you are dealing with a set of individuals and not a community”. This feeling is notable in the study area. Older people claim that it is a new feeling and point to examples of the community working together in the repair of a road in the area. However, those not participating were fined as they passed. Other projects have faced and face similar problems because of the lack of organizational structures. UNICEF [13] notes the reliance on interpersonal contact as a basis for a Ugandan AIDS communication strategy because of the weakness of organizational structures in many areas. CLASSIFICATION
OF PARTICIPATION
Having described some of the ways in which members of the community are involved in the Programme in the sub-county it is now possible to use the typology developed for farming systems research in an attempt to define the level of participation which is taking place in each case. If one looks at the ‘contract’ level of participation it is apparent that for both medical and social indepth studies and surveys, the Programme’s ‘contract’ with the survey village populations rests with their consent to participate, repeatedly, in the yearly survey rounds. In addition, the Programme has a contract with the local people who have been employed by the Programme. Originally many of them were contracted for the purposes of the survey and drawing up the cohort for the clinical studies. Participation of the community approached the ‘consultative’ level in the socioeconomic survey by using local people as interviewers and mobilizers, which provided some feedback on questionnaire content and the impact of the study. Since the baseline survey three of the women interviewers and one of the men have become involved in designing and implementing focused social research projects of interest to them: one being the position of orphans in the villages and another on attitudes and beliefs about sexual behaviour. In an effort to find more ways to involve more sections of the population in a ‘consultative’ role, and in order to strengthen the ‘contract’ and gain a greater acceptance of the Programme objectives, early in the second round Programme medical and social research staff met on a regular basis with the mobilizers to discuss the ‘strategy’ for the census and medical survey in each village: key people to contact and involve so that all groups could be contacted. It can be claimed that a ‘consultative’ level is achieved with some local leaders through the meetings with the RC3 and the Health Advisory Committee. These opinion formers have a role as consultants, but not as decision makers. Like the
1094
JANETA. SEELEYet al.
local interviewers and mobilizers and the community liaison officer, the RCs and the members of the HAC make suggestions for Programme implementation, they do not make decisions. Consultation, as the Programme stays in the area, becomes more feasible with the broader community through feedback from community meetings and the interaction with the community of programme personnel. One example is a community request that the Programme undertake malaria research in addition to the work of HIV/AIDS and sexually transmitted diseases since this is viewed as a big health problem in the area. This, in mid 1991, the Programme has begun to do. ‘Consultation in the implementation of the Community Based Health Care strategy, has proved necessary in order that the development is sustainable. But the initiative for the CBHC has come from outside, and the challenge will be to enable the population to become collaborators in its implementation rather than passive recipients of another new, imposed, idea. The ‘collaborative’ level has only been achieved to a very limited extent. One of the local women interviewers, for example, has been a key ‘collaborator’ in the study on sexual behaviour organizing informal interviews and facilitating focus group discussions using questions formulated in women’s group meetings. As yet, the Programme has no examples of community participation at the ‘collegiate’ level. BENEFITS
TO THE COIMMUNITY
At this stage it is difficult to assess the benefits of community involvement in the Programme activities for the community itself (or communities themselves). However, a few positive achievements can be appreciated, the most obvious being the salaries and allowances of the many local people who work for the Programme. Funds have also been designated for ‘community development’, intended as an appreciation for cooperation and participation in the research. Community involvement in the Programme has helped to bring groups of people together and create discussion fora that would not normally exist. The Health Advisory Committee is a case in point. There has also been a mushrooming of women’s groups organised on a parish level, who seek assistance from the Programme staff on health education and home/ agricultural development (which the Community Development Coordinator is able to provide). At these various meetings members of the community can share and exchange ideas and experiences. To a limited extent the Programme has been able to improve the health services in the area through assistance afforded to Government health units and the more specialised services available for referred patients (from the health units or from the medical
survey team working in the villages) at the study clinic and laboratory. BENEFITS
TO THE PROGRAIMME
Some of the benefits to the Programme of community involvement have already been mentioned. By involving the community local knowledge and experience have been integrated into the research planning, for example, in the modification of the questionnaire and focused study checklists. Local mobilizers have been able to approach their communities in ways not readily open to outsiders to explain the Programme. The prejudices and fears raised by the Programme are, in the Programme’s experience, dealt with most effectively by someone from within the community who understands the way local people think. Indeed, the rationale behind training so many people as counsellors was to enable as many people as possible to have the correct information about HIV/AIDS which they could then use in their own communities. The support of the local political structure, and religious leaders has meant that when difficult decisions need to be made, a body of people, knowledgeable about the Programme, exists to give advice. This has been particularly valuable when issues involving local politics have been raised, which would be a quagmire for the unwitting outsider. THE DRAWBACKS
OF COMMUNITY
INVOLVEMENT
When one views the MRC Programme as an externally imposed research programme, with aims and objectives beyond the area of study, the involvement of the community could be seen as a drawback because it slows the pace of research. By employing local people, rather than bringing in teams of interviewers from outside, the Programme has been committed to a lengthy period of community preparation and training which is repeated for each new study. There has to be a great deal of repetition of research information for employees in order to achieve reasonable levels of performance. It is easy for aims and objectives to be misunderstood particularly when dealing with a sensitive area of research. There is the danger that the Programme would benefit at the expense of the community and draw people away from tasks of direct benefit to the villages. For example, local services like teaching could have suffered loss of staff had it not been foreseen and guarded against. Teachers were preferring programme employment to teaching. One way in which the teachers can be involved without taking them out of the schools is through the teachers’ working committee where they work on health education in their schools. Some individuals or groups employed directly by the Programme have been identified more and more as programme employees and alienation by the community was observed. This has been the case for the
Community-based
Community Liaison Officer who has ceased to hold the political sway in the area which he obviously had when he was an RC3 member. This devalued his role in the Programme. However, working with the Programme for others has heightened their political and social profile and led to promotion. Four RCl executive members, who were Programme employees, have been elected to the RC2 level in their parishes. Although local interviewers, census takers and mobilizers are excellent at their work they have tended to carry their local biases, beliefs and prejudices particularly for religious and immigrant status. It has been Programme policy not to use local people for sensitive data collection from individuals, or giving of confidential information, like a person’s HIV status. Outsiders are used for such discussions as HIV/AIDS still remains a stigmatized condition.
HIV/AIDS research
and is genuinely convinced that the long-term outcome of the research will be beneficial. One objective of the Programme in involving the community lies in the hope that the community’s involvement will be sustained beyond the Programme and that through it a community-based response to HIV/AIDS will be generated. HIV/AIDS research requires a cultural sensitivity and community intimacy unparalleled in other health research challenges. Acknowledgements-The
authors are grateful to the Programme staff, and in particular the local community, for their contribution to this paper. The suggestions and comments made on earlier drafts of this paper by Dr Tom Barton and two anonymous reviewers are gratefully acknowledged. The Director, Uganda Virus Research Institute, and Director, AIDS Control Programme are thanked for their support and for permission to publish this article. REFERENCES
CONCLUSION
The interaction with the community in communitybased research is a complex process. It is all the more complex when an external research body endeavours to undertake research on a topic which is highly sensitive, such as HIV/AIDS, which is surrounded by considerable anxiety and fear. It takes time to understand the power structures within the population; initial impressions can easily be misleading, wrong paths may be pursued, and parts of the community alienated. Community participation is considered by many to be essential. Through our experience with the implementation of the MRC Programme we have learnt that it may be an idealized objective which we have only managed to realise in a very limited way. When one considers the four modes of community participation described above by Ashby er al. [2] it is clear that little of the community involvement in the MRC Programme goes beyond the contract level. The community has had a small impact on policy development through the introduction of the malaria research component. Over time local leaders have become more aware of broader benefits of the Programme (improvements in health services over the long term for example) and keener to be part of the implementation. Gradually locally employed staff are gaining the confidence to suggest topics for research and to organise projects themselves (as in the case with the women in the social research). In contrast to the ‘ideal’ community participatory approach where the a priori goals are determined by the community itself, the MRC Programme established the goals, the aims and the objectives of the research. Thus it has been for the community, after accepting the presence of the Programme in the area, to look for ways to benefit from its presence. Participation beyond the level of ‘the contract’ will only increase once the community has gained confidence
10%
I. United Nations Centre for Human Settlements Community Participation for Improving Human Settlements.
UNCHS, Nairobi, 1983. 2. Ashby J. A., Quiros C. A. and Rivera Y. M. Farmer participation in on-farm varietal trials. Agricultural Administration (Research and Extension) Network Discussion Paper 22, ODI, London, 1987. 3. Merrill-Sands D., Biggs S. D., Kean S., Poats S., McAllister J., Moscardi E. and Ruando S. Methodology for the INSAR Study on the Organisation and Management of On-Farm Research. ISNAR, The Hague, 1986.
4. Kelman H. R. Evaluation of health care quality by consumers. Inf. J. Hlth Services 6, 431-441, 1976. 5. Buchner D. M. and Pearson D. C. Factors associated with participation in a community senior health promotion programme: a pilot study. Am. J. Pub/. Hlrh 79,(6), 775-177,
1989.
6. Katzenellenbogen J. M., Pick W. M., Hoffman M. and Weir G. Community participation in the Mamre Community Health Project. S. A/i. Med. J. 74,(7), 335-338,
1987.
7. Kaseje D. C., Sempebwa E. K. and Spencer H. C. Community leadership and participation in the Saradidi, Kenya, rural health development programme. Annls irop. Med. Parasit. 81, Suppl. 1, 46-55, 1987. 8. Rikin S. B. Communiry Participation in Maternal and Child Health Family Planning Programmes. An Analysis Based on Case Smdy Materials. WHO. Geneva,
1990. 9. Annet H. and Nickson P. J. Community involvement in health: why is it necessary? Trap. Docror 21, 3-5, 1991. 10. Rifkin S. B. Primary health care in Southeast Asia: attitudes about community participation in community health programmes. Sot. Sci. Med. 17, 1489-1496, 1983.
11. Saraceno B., Briceno R. A., Asioli F., Liberati A. and Tognono G. Cooperation in Mental Health: an Italian Project in Nicaragua. Sot. Sci. Med. 31, 1067-1071,
1990.
12. Richards A. I. The Changing Structure of a Ganda Village Kisozi 1892-1952. East African Publishing House, Nairobi, 1966. 13. UNICEF UNICEF response to AIDS in Uganda. Expanded communications programme Draft Plan of Operations. UNICEF,
1991.
1991-1995,
Kampala,