Community engagement in health research: two decades of experience from a research project on HIV in rural Uganda

Authors


Corresponding Author Dermot Maher, MRC/UVRI Uganda Research Unit on AIDS, PO Box 49, Entebbe, Uganda. Tel.: +256 414320042; Fax: +256 414321137; E-mail: dermot.maher@mrcuganda.org

Summary

Objectives  To describe how a research project on HIV epidemiology in rural Uganda has engaged the community over the past two decades, describing activities, opportunities and challenges that have arisen.

Method  The review draws on the experience of the authors as investigators involved in the project at various times since its inception in 1989, and on project documents and peer-reviewed publications.

Results  The project attracts community interest, participation and support mostly through community groups. The three main areas of activity are: health care and promotion, HIV/AIDS prevention and care, and community development aimed at poverty reduction. Key opportunities arise from the long-term joint commitment of the project and the community over nearly 20 years, and the potential to accommodate research beyond HIV. Challenges arise from participation fatigue, countered by innovations for the community and investment in capacity development for staff, and from the need to balance community development expectations and the project focus on HIV research.

Conclusions  Judged by criteria of longevity, acceptance, and scientific output, community engagement in this HIV research project in rural Uganda has been successful. The experience from this project contributes to the collective documentation and analysis of case studies from various research projects in developing countries which identify good practices from multiple stakeholder perspectives.

Abstract

Objectifs:  Décrire la façon dont un projet de recherche sur l’épidémiologie du VIH dans les zones rurales de l’Ouganda a engagé la communauté au cours des deux dernières décennies, en décrivant les opportunités d’activités et des défis qui ont surgi.

Méthode:  L’étude s’appuie sur l’expérience des auteurs en tant qu’investigateurs impliqués dans le projet à diverses reprises depuis sa création en 1989, et sur les documents de projets et publications.

Résultats:  Le projet attire l’intérêt de la collectivité, la participation et le soutien par le biais de la plupart des groupes communautaires. Les trois principaux domaines d’activité sont: la promotion et les soins de santé, la prévention du VIH/sida et les soins, et le développement communautaire visant à la réduction de la pauvreté. Les opportunités clés sont survenues dans le cadre de l’engagement commun à long terme entre le projet et la communauté depuis près de 20 ans, et la possibilité d’intégrer de la recherche au-delà du VIH. Les défis sont survenus dans la fatigue à la participation, contrée par les innovations pour la communauté et l’investissement dans le développement des capacités pour le personnel, et de la nécessité de trouver un équilibre entre les attentes du développement communautaire et la concentration du projet sur la recherche VIH.

Conclusions:  Jugé par des critères de longévité, d’acceptation, et la production scientifique, l’implication de la communauté dans ce projet de recherche sur le VIH dans la région rurale de l’Ouganda a été couronnée de succès. L’expérience de ce projet contribue à la documentation collective et l’analyse des études de cas de divers projets de recherche dans les pays en développement qui identifient les bonnes pratiques à partir de plusieurs perspectives des parties prenantes.

Abstract

Objetivos:  Describir como un proyecto de investigación sobre epidemiología del VIH en una zona rural de Uganda a involucrado a la comunidad durante las últimas dos décadas, describiendo las oportunidades y los retos que han surgido.

Métodos:  La revisión se basa en la experiencia de los autores como investigadores involucrados en el proyecto en varios momentos desde su nacimiento en 1989, así como en documentos del proyecto y publicaciones científicas.

Resultados:  El proyecto atrae el interés de la comunidad, su participación y apoyo principalmente mediante grupos comunitarios. Las tres áreas principales de actividad son: cuidados y promoción sanitarias, prevención y cuidados del VIH/SIDA, y desarrollo comunitario enfocado a la reducción de la pobreza. Las oportunidades claves surgen del compromiso conjunto y a largo plazo en el proyecto y con la comunidad, durante casi 20 años, así como en el potencial de investigar más allá del VIH. Los retos surgen del cansancio en la participación, encontrados por innovaciones en la comunidad y la inversión en el desarrollo de los miembros del equipo, y de la necesidad de balancear las expectativas de la comunidad en lo concerniente al desarrollo y el enfoque del proyecto sobre la investigación en VIH.

Conclusiones:  Juzgando por criterios de longevidad, aceptación y resultados científicos, la participación de la comunidad en este proyecto de investigación sobre VIH en Uganda rural ha sido un éxito. La experiencia de este proyecto contribuye a la documentación colectiva, y el análisis de estudios de casos de varios proyectos de investigación en países en vías de desarrollo que identifican las buenas prácticas desde la perspectiva de múltiples interesados.

Introduction

Engaging communities as key constituents in research conducted in developing countries is of increasingly recognized importance (Tindana et al. 2007). For example, one of the core themes of Bamako 2008 (the Global Ministerial Forum on Research for Health) is ‘engagement of all relevant constituencies in research and innovation for health’ (Horton & Pang 2008). In steering a new course for health research, Bamako 2008 recognizes that Africa is ‘the epicentre of the greatest global health, security, and development challenges today’ (Ijsselmuiden et al. 2008). We report on two decades’ experience of community engagement in a research project on HIV in Africa, identifying the challenges and opportunities arising from long-term interaction between researchers and the community. The project (Table 1) in rural southwest Uganda is run by the Medical Research Council (UK) through the Uganda Virus Research Institute (UVRI).

Table 1.   MRC/UVRI project – annual General Population Cohort (GPC) survey
• Annual household survey (initially among the residents of 15 villages, later increased to 25 villages with 18 000 participants)
• All adults and children (with parental consent) are eligible for inclusion
• Community sensitization activities precede each annual survey round, including briefing the local council and a meeting (including a video) for the whole village
• All households are visited, in turn, by the mapping, census and survey teams (all routinely accompanied by a village councillor)
• Consenting community members are interviewed at home by survey field workers and provided a blood sample for HIV testing
• Average annual survey participation is about 70%, although a much higher percentage has participated
• 36 GPC staff: mapping 1, census 7, survey 20 (including 8 in volved in community mobilization), survey clerks 2, data entry officers 5, project leader 1
• 8 community development staff: counselors 6, home-based care nurse 1, project leader 1
• Activities financed through Unit core funding

Despite the enormous impact of the HIV epidemic, population-based research on HIV epidemiology in Africa has been very limited. This project is one of only a handful of population-based cohorts, most of which form the ALPHA network (Todd et al. 2007). The findings from the annual survey of HIV serostatus and of related factors have increased our understanding of the dynamics of the HIV epidemic (Mbulaiteye et al. 2002), the determinants of infection (Pool et al. 2006) and subsequent disease progression (Nunn et al. 1997), as well as the impact on individuals, families and the community (Nakiyingi et al. 2003; Ross et al. 2004; Van der Paal et al. 2007). This has informed the development of prevention, treatment and mitigation policies nationally and internationally (Marston et al. 2007).

This paper reviews MRC/UVRI Unit documents and peer-reviewed publications and draws on the experience of the authors as investigators involved in the project at various times since inception in 1989. There are a variety of approaches to community engagement, varying from an externally initiated research agenda (as in this case) to community-based participatory research. The focus of this paper is how it has gained the trust and cooperation necessary to create and sustain a successful research programme over 20 years.

Definition of terms

Without a standard definition of community or of community engagement, proposed definitions have proliferated. This paper refers to a geographic community defined by residence in the project study villages. Community engagement refers to the process of collaborative work with relevant partners who share common goals and interests.

Setting

The site (not far from Lake Victoria) was chosen as a typical rural setting in Africa (Table 2). The Trans-African Highway passes nearby bringing commercial sex and transmission of HIV and other sexually transmitted infections in its wake. As in many other rural settings in Uganda, most people are subsistence farmers, levels of literacy (especially female) are comparatively low, there are no tarmac roads (and access may be difficult during the rains) and local radio is the main mass communication medium.

Table 2.   Key features of the project setting
Uganda
• Recovering since 1986 from previous civil, political and economic turmoil
• Population 30 million
• Vast majority engaged in subsistence agriculture
• Annual Gross National Income $300 per capita; mean life expectancy at birth 50 years (UNICEF 2008)
• One of the countries in Africa where the HIV epidemic was first reported and was initially most negatively affected by HIV/AIDS
• 18% peak national HIV seroprevalence in 1992, with a sub- sequent 70% decline through the 1990s until reaching a plateau of about 6% at the end of that decade
• Recent indications that HIV prevalence and incidence are again on the rise
The study community in rural southwest Uganda
• Stable, homogeneous, with most people from the Baganda tribe, and 15% of Rwandese origin (well assimilated into the community)
• Mostly Christian religious affiliation, with a significant Muslim minority (28%)
• 50% of the population under 15 years of age
• Main income-earning activities: growing bananas, coffee and beans; trading fish
• Main change in health status over past 20 years due to impact of HIV

The process of community engagement

The initial engagement process in the late 1980s lasted nearly 2 years, providing a firm foundation for continuity over the next two decades. Negotiations on the project location with key stakeholders involved local community leaders and the national Ministry of Health. A baseline survey established the economic and socio-demographic features of the community.

A community project advisory board initially played a key role as community liaison. Community consultation and feedback was subsequently assured through the Local Council (LC) system of civic administration (Table 3), thereby facilitating sustainability and community acceptance. Community development staff attended monthly meetings of both the LC I and LC III executives, enabling regular consultation on current and planned project activities, and discussion of any issues brought up by the councillors on behalf of the residents. The LC I councillors held smaller community meetings in villages which provide forums for voicing any dissatisfaction, complaint, criticism or appreciation. At these village meetings, residents could bring issues to the attention of councillors at the LC I and LC III executive meetings, and the councillors reported back on the outcome of discussions. Thus, there was a feedback system for identifying problems in the community, generating solutions for corrective action and planning (in consultation between the project and community representatives) and reporting back on implementation of these solutions.

Table 3.   Local Council system of civic administration in Uganda
Unit of civic administration (synonym)PopulationComposition of LC executiveSelection of chairpersonSelection of councillors
LC I (village)c. 80010 councillorsPopular ballot among village residentsAppointed by chairperson
LC III (subcounty)c. 40 0005 councillorsPopular ballot among subcounty residentsPopular ballot among subcounty residents

The project engaged not only the formal LC1 and LCIII community leaders but also informal leaders (individuals with considerable influence on community opinion by virtue of their status or reputation). Dialogue with informal leaders established a good relationship built on trust, transparency, integrity and commitment. An influential informal leader was recruited as the first community liaison officer, and other informal leaders have been recruited as advisers and guides during annual survey rounds. As an example of the value of open communication with the community, in the early 1990s a misapprehension arose that the blood taken in the surveys was sold to raise money to pay staff. Community representatives were reassured when invited to visit the field station and laboratories to see for themselves what was done with blood samples.

Community engagement activities

The project undertakes activities which attract community interest and participation in (and support for) the project, mostly through community groups. The three main areas of activity are: health care and promotion, HIV/AIDS prevention and care, and community development focused on poverty reduction.

Health care and promotion

Clinical care

Field staff are equipped to treat common conditions detected during household survey visits (e.g. malaria, helminth infestation and ringworm). All 18 000 survey participants are eligible for free outpatient care at the project clinic and free inpatient care at one of the local hospitals; costs are covered by the project.

Support for improved service delivery at government health units

A good working relationship has been established over the years between the research project and the local health units. Project support for the local health units includes: transport and manpower on national immunization days; an allowance in recognition of the extra work generated by collaboration in research activities; equipment where need is acute; and provision of a counsellor where needed [especially for antiretroviral treatment (ART) counselling and prevention of mother-to-child transmission services].

Household hygiene improvement

A group of 20 trained community members (trainers of trainers) work with a community-based healthcare nurse in conducting activities to improve the quality of domestic life (by constructing pit latrines, hand-washing facilities and fuel-saving stoves) and general personal hygiene.

Water supply and sanitation

The project has improved the quality of water sources (e.g. by ensuring springs are protected).

Malaria prevention

The basic principles of malaria prevention are promoted and long-lasting insecticide-treated bednets are distributed to the households of survey participants.

Promotion of safe motherhood

The community development team coordinates the training of traditional midwives and the project contributes to improved service delivery at the government maternity centres.

Homecare services

The community-based healthcare nurse provides home-based care to bed-bound members of the community (with AIDS or other debilitating chronic illness).

HIV/AIDS prevention and care

Counselling and testing services

Project counsellors provide individual and group counselling (both pre-test and post-test). Despite some resistance due to the conservativeness of the society, the proportion of men who know their HIV status has increased from 6% to 25%, and the proportion of women from 5% to 34%, over the past 5 years.

School HIV prevention programme

A group of 14 teachers has been trained to conduct an outreach programme for all primary and secondary schools in the subcounty. After prepatory sensitization of community leaders and parents, age-appropriate messages are prepared, discussed and disseminated to school children (as well as to out-of-school youth) during the term-time and holidays.

Support to community perpetuators of culture

Parents generally do not talk to their children about sex because this is traditionally the work of paternal aunts (ssenga) for girls and maternal uncles (kojja) for boys. Consequently, a partnership with these perpetuators of culture equips them with the right information to educate youth who tend to trust them more than their parents as sources of information on sensitive issues.

Group of people living with HIV/AIDS (PLWA)

A group of 20 PLWAs provides psychosocial peer support, works to reduce stigma by disclosing their own HIV status, encourages adherence to ART, disseminates information about project research activities and promotes household income generation.

Providing and promoting condoms

Free condoms are distributed at the counselling centres and study clinic. The project facilitates the distribution of condoms for sale in shops.

Community development

Agricultural improvement programme for training farmers

The research station has a demonstration agricultural plot which provides improved seed material for farmers to pass on to one another. High-yield crops are grown and the harvest is used as food supplements for bed-ridden community members. The project runs these activities in collaboration with the subcounty agricultural extension coordinator.

Improved household income through income-generating associations

Community members have been mobilized to form 34 community-based income-generating associations which receive training in credit access and management to support the development of household income-generating projects.

Improved community social network

Activities to improve the social interaction and cohesion amongst members of the community include sports functions and commemoration of national days (e.g. World AIDS day observance). All schools and community drama groups are involved in celebrations where competitions in music, dance and drama are held with district heads invited to officiate. At these occasions, invited guests give themed talks.

Opportunities and challenges

Opportunities

Generally, the greater stability of rural compared with urban communities, and the stability of this particular rural study population, have facilitated community engagement and promoted sustainability through durable relationships between researchers and the community.

The homogeneity of the study population and ease of access to all households have minimized bias in survey coverage and maximized equitable access to project benefits. The benefits comprise both the direct benefits arising from the research findings (e.g. provision of intensified HIV prevention measures to counter high HIV prevalence, and the indirect benefits or ‘social value’ of the research, i.e. the steps taken to build local capacity and extend resources). Recognition by the community of these benefits favours continued project acceptance.

Access to a rural population allows the study of health conditions and threats common in rural Africa, as well as intrinsic difficulties that arise when well-intended healthcare delivery policies meet real-life conditions. The project and policy-makers in the country have benefited tremendously from the insights that the work in this community has provided, and is still providing.

The long-term commitment of the MRC/UVRI Unit to the project and the community has resulted in research findings of particular value after nearly 20 years of follow-up. The long-established survey set-up has the potential to accommodate a widened scope of research beyond HIV.

Challenges

Maintaining strong institutional relationships between the project and local civic administration has minimized potential disruption due to leadership changes in the project and the local community.

The community’s tendency to suffer from participation fatigue increases with time, necessitating counter-measures to maintain interest and coverage rates: introducing new incentives (e.g. mosquito nets); improving the quality of services provided to the community; and developing new research ideas. Ongoing engagement enables identification of those project components that promote continued participation. The field staff’s tendency to suffer from participation fatigue is countered by annual assessments of staff training needs and investment in capacity development.

The political and religious affiliation of field staff is a potential source of community disruption, and staff with a different affiliation from that of the study participants may be rejected (Lavery et al. 2007). This risk was diminished by community consultation to emphasize the project’s political neutrality. Recruiting mainly local project staff has facilitated dialogue with study participants, smoothing the path of community understanding and acceptance of the project. Staff conduct is subject to strict rules forbidding staff from expressing political or religious affiliations within the community, and from exploiting their potentially influential position within the community to gain financial or sexual favours. Breaching these rules incurs warning or dismissal, but no instances have been reported.

The project is one of a small number of externally supported community activities in the area which have had a significant impact on the local economy due to employment (about half of the staff are recruited locally) and cash injection (e.g. renting accommodation and buying food, goods and services). Measuring the project’s contribution will enable an assessment of its possible distorting effect on the socioeconomic conditions associated with HIV transmission.

The project is exploring ways of ensuring sustainability of the services it currently provides (e.g. negotiating with local government health services to meet the ever-growing costs of providing ART).

As the primary mission of the project is to undertake research, the extent to which the project can devote resources to development per se is limited. Although HIV is recognized as a key health and development problem affecting this disadvantaged population, there has been no systematic attempt to identify with the community their development priorities, for example through participatory appraisal (Rifkin 1996). The extent to which the scope of the project can or should be widened from a focus on HIV research to a broad development agenda remains an open question.

The direct and indirect benefits of the project to the study population are incentives which attract community interest and participation in, and support for, the project. Disproportionate incentives may be considered as undermining the key ethical safeguard of informed consent for research. Awareness of this pitfall guides judgment as to the appropriateness of incentives. The provision of health care by the project, for example, is complementary to local provision (the local government health centre is close to the field station and the district hospital is accessible within 45 min by road).

Conclusion

Community engagement in health activities was enshrined as a cornerstone of Primary Health Care at Alma Ata (WHO 1978; Tarimo & Webster 1994), with success subsequently demonstrated in many healthcare programmes (Hadley & Maher 2000), including more recently in HIV prevention (Jones et al. 2005) and treatment (Mermin et al. 2008). Although several models of community engagement have been proposed, and theoretical goals and principles formulated (Horton & Pang 2008), very few systematic attempts have been made to determine and document the effectiveness of community engagement in health research. This lack of an accepted methodology is a need that the research community must address. Judged by criteria of longevity, community acceptance, and scientific output, community engagement in this HIV research project in rural Uganda has been successful. The experience from this project contributes to the collective documentation and analysis of case studies from various research projects in developing countries which can identify good practices from multiple stakeholder perspectives (Newman 2006).

Acknowledgements

We recognize the vital roles played by Dr Jane Kengeya-Kayondo, the late Dr Daan Mulder and the late Mr Joseph Ssonko in establishing the project, by Prof James Whitworth in developing the project as previous Director of the MRC/UVRI Programme on AIDS, and by the late George Katongole in developing the community engagement activities. The project is funded by the Medical Research Council (UK) and the UK Department for International Development.

Ancillary