D.Cur. / Not only do communities and individuals have the right to participate in their own health care, but a key means to reducing the risk of potential social and psychological harm of people participating in clinical health research, especially efficacy trials, is to ensure that the community in which the research is being carried out, as well as health service providers, are meaningfully involved in the research process. One of the requirements of the South African White Paper for the Transformation of the Health System (South Africa, 1997: 74-78) which refers to Essential National Health Research (ENHR), is that the research agenda should initiate a process whereby stakeholders are equal inclusive partners in the research. Therefore researchers are no longer perceived as having the right to exercise a monopoly on conducting and explaining their research but now have a duty to empower their research participants and the research community to understand their own situation and become a collaborative partner in the research process. In this participatory approach to research, a collegiate partnership needs to be facilitated, but the power differentials that exist between stakeholders in community research make this a difficult partnership. The researcher, having had prolonged interaction with a community which has been targeted for large efficacy trials, initiated this research to gain insight into some of these difficulties and to describe the understanding and expectations of key stakeholders into community participation in clinical health research and develop a model to manage this participation. The critical elements in the study took cognisance of the research context, the dynamics within that context, the relevant stakeholders in a participatory approach to clinical health research and the processes within which they engage. Literature was reviewed throughout the study that was conducted in two phases. Phase one of the research design is ideographic, contextual and descriptive in nature. A perception survey, within a targeted community, was conducted to describe the understanding and expectations of community representatives, health service providers and researchers of community participation in clinical health research. The analysis of the perception survey endorsed the notion that community participation needs to be an v integral part of all clinical health research. The findings from the perception survey and a further literature search enabled the researcher to develop a theoretical framework for the construction of a model to manage community participation in clinical health research. The model is overarching with multiple processes namely: the participatory management process central to the model; the preparatory process; research process and quality improvement process. The model facilitates a collegiate partnership between stakeholders where there is mutual influence and collaborative interaction. Its implementation requires a radical paradigm shift in research and a commitment on the part of those "in power" to share power. It is recommended that standards that monitor, measure and evaluate community participation in clinical health research be developed to operationalise the model. Funders increasingly mandate community participation in clinical health research and the challenge is to ensure that this process goes beyond tokenism. A model to manage community participation in clinical health research will facilitate the conscious integration of key stakeholders into the research process to provide a platform for the voiceless and powerless within the research community, so that they become active participants and partners, not merely 'objects' in the process of research and knowledge creation. This will not only meet the requirements of funders and the ENHR, but this collaboration and partnership will foster trust between researcher, health service providers, community representatives and trial participants. There will be mutual understanding of the research issues and this will ensure that the study or clinical trial respects cultural and ethnic differences among participants. The primary outcome of the operationalisation of the model will be to facilitate quality management of community participation in clinical health research.
| Identifer | oai:union.ndltd.org:netd.ac.za/oai:union.ndltd.org:uj/uj:1821 |
| Date | 06 December 2011 |
| Creators | Fröhlich, Janet Ann |
| Source Sets | South African National ETD Portal |
| Detected Language | English |
| Type | Thesis |
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