Josh Levene, from the International HIV/AIDS Alliance gave an introduction to community participation, clarifying for delegates what it is and what it isn’t. He gave a community oriented view of community participation, where community members own and control the research entirely. Using the example of deprivation he illustrated the difference between researchers’ view their study outcomes/exposures and how participants experience them. For example, researchers seek deprivation measures which are simplified and universal, whereas poor people experience deprivation as complex and locally specific.
Community Participation is efficient because it involves local people and avoids wasting money on priorities that researchers value but have little use in the field. For example, a World Bank study of 25,000 people from around the world, asked respondents what they felt was the principal issue with health services in their area. Contrary to what researchers might think, the answer was not “communication”, “availability of services” or “usability” but “unfriendly staff”. This highlights how community participation can be a means to greater effectiveness in study design and proposal. People are also more likely to take care of a project in the long run if they are fully involved, leading to greater sustainability.
Community Participation (CP) plays a strong role in promoting the human rights and strengthening civil society. The UK lags a long way behind, when it comes to incorporating CP, which is often seen as a lo-tech option, only really applicable in developing countries. The objective of CP is empowerment of research participants leading to sustainable local actions and institutions. Researchers act as facilitators to research owned by the local people who use visual rather than verbal methods to produce results that stand up to community, rather than scientific rigour.
About Josh Levene
Since 1995, Josh Levene has been involved in the design, application, monitoring and evaluation of participatory approaches both in the health sector, and other fields. He has worked for various UN agencies, government departments, development and humanitarian relief NGOs in Africa, the Balkans, Middle East and, hardest of all – Middlesbrough. Recently he has also worked for the Participation Group at the Institute of Development Studies. Josh is currently responsible for advising on community participation issues at the International HIV/AIDS Alliance
The experiences affecting sub-Saharan African patients’ engagement in antiretroviral clinical trials: an exploratory participative action research study
ieno discussed community participation from an African perspective. She presented an overview of an ongoing study, (undertaken with Kevin Corbett at St. George’s Hospital, South London), investigating the experiences of Africans involved in anti-retroviral trials. The study sought to enhance the enrolment of Africans and to increase user consultation. Using an action research methodology the researchers employed several cycles of activities. The research process involved cycles of planning, acting, observing and reflecting, embedded in the overall process of the different communities engaging in the study.
The researchers put together a Research Advisory Group (RAG) comprised of patients, academic researchers, doctors, nurses and other health practitioner to assist in achieving study aims and objectives. The advisory group slowly developed into a reference group. The RAG will eventually become a user forum which will continue after 18 month research study has finished. The study strived to be as democratic as possible with no one individual having absolute power. However, it was not a classic “bottom up” model, having greatly facilitated by researchers and clinicians. The researchers came across many challenges, from misconceptions about the role of the RAG to clinicians who did not fully embrace the exploratory research approach.
About Gertude Othieno
Gertrude Othieno is Director of African Culture Promotions (ACP) a voluntary organisation that provides specialist community-based HIV prevention services to African communities. She is also Research Assistant currently undertaking research into the service involvement of patients/users at St George’s Healthcare NHS Trust. Gertrude is a representative of South West London African HIV Forum on the African HIV Policy Network (AHPN). She is Editor of African Cultural and Social Structures, a handbook that provides useful information to the health, social care and voluntary sectors.
About Kevin Corbett
Dr Kevin Corbett is a senior lecturer in the Faculty of Health and Social Care Sciences at St. George’s Hospital Medical School where he teaches on undergraduate and postgraduate programmes. Kevin has a PhD in medical sociology and is undertaking research into the service involvement of patients/users.
Challenges of Community Involvement: Realities and Practicalities
John Imrie gave his personal reflections about the challenges of community participation based on his experiences as an academic researcher. Community involvement and participation is a priority with funders. Researchers employ various models of community collaboration from stakeholder input models, where the research has input from a variety of interested parties, to partnership models where researchers go into voluntary organisation to work or vice versa.
Community based organisations (CBOs) can be beneficial to a study by providing access to study participants and insight into the service provider/user point of view. CBOs can also assist in the dissemination of results and making sure the results are relevant in the field. From the CBO perspective, collaborating with researchers can help an organisation build its own research capacity and ensure that research is relevant to the needs of the organisation and the community it serves.
Before the research project begins both CBO and researchers should examine why they are undertaking the partnership and whether both parties have the infrastructure to deliver their end of the deal. Agreement should be made beforehand about what model of collaboration should be employed and a contingency plan should be put in place in case things do not work out.
Collaboration has significant added value but it is not inexpensive. Funding can be a potential problem and money should be sought to properly compensate CBOs for their time and input.
About John Imrie
John Imrie is a Senior Research Fellow in the Department of Sexually Transmitted Diseases at the Royal Free and University College Medical School. He has been working in various aspects of sexual health and HIV since 1994 and has been at the Mortimer Market Centre since 1995. He completed an MSc in Health Promotion Evaluation at the London School of Hygiene and Tropical Medicine in 1994, and is currently completing a PhD at UCL. With others, he recently published an edited collection on experimental evaluations of sexual health interventions.
Dr. Alice Welbourn lead an interesting discussion about the future of participatory research (PR) in the UK. Before the discussion began she gave a short presentation about methods that can be used in PR that make research more accessible to the wider community.
The UK lags behind many other parts of the world when it comes to PR, although it is not difficult to transfer methods used elsewhere to the UK. Already in Coventry, PR has been used to investigate issues around food security. Whilst, there is some research around Africans and HIV in the UK that has used collaborative methods, most of it has not fully embraced the potential of PR. The use of questionnaires and other prescriptive methods, the selection of specific target groups, such as those at risk or living with HIV, has limited the participatory nature of the research.
Non-verbal techniques can help participants visualise the issues being researched during the process they are learning and sharing information. Performative methods such as drama and role play, dance and song, can be used to gather data to be used in research. Diagrams, drawings and “issues maps” can also be used.
By involving the whole community and focusing on a wider range of issues, the whole research process starts off from a different perspective. Community members develop greater social capital in relations to the issues and it is an effective way of highlighting how all people are affected by HIV.
The Stepping Stones training manual, developed by Dr. Welbourn, provides more information about these techniques.
The Manual is available at: www.steppingstonesfeedback.org
About Alice Welbourn
Dr Alice Welbourn is a freelance social development adviser, writer and trainer on participatory approaches to gender, sexual and reproductive health. She is also the chair of the International Community of Women living with HIV/AIDS (ICW). Her latest book, Realizing Rights Transforming Approaches to Sexual and Reproductive Well-Being, was published by Zed Books in January.
Last Updated June 9, 2006