11 research outputs found

    Evaluating community engagement in global health research: the need for metrics.

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    CAPRISA, 2015.Abstract available in pdf

    High AIDS-related mortality among young women in rural KwaZulu-Natal.

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    Objective. To establish mortality rates and cause of death in a rural community in KwaZulu-Natal. This study was conducted as part of a demographic and health survey to assess the impact of HIV infection in this community. Methods. A cross-sectional survey was conducted between February and July 2004. The survey made use of structured questionnaires and verbal autopsies, which yielded detailed information at household level, including the demographic profile of residents, mortality rates and cause of mortality between February 2003 and February 2004. Results. The overall mortality rate in this community was 2.9 deaths per 100 person-years (95% confidence interval (CI): 2.5 - 3.3 per 100 person-years). The highest mortality rate among women occurred in the 30 - 34-year age group, while among men it occurred in the 35 - 39 and > 60-year age groups. Of the 185 verbal autopsies reported, 77 deaths (42%) were attributable to AIDS. The survey revealed that women aged 20 - 24 and men aged 35 - 39 years were bearing a disproportionately large burden of AIDS-related mortality in this community. Conclusion. AIDS-related mortality was found to be disproportionately high in young women in this small rural community, and the majority of deaths resulted from pulmonary tuberculosis. The need to strengthen prevention and treatment efforts in this and similar settings is highlighted

    High prevalence of abnormal Pap smears among young women co-infected with HIV in rural South Africa – implications for cervical cancer screening policies in high HIV prevalence populations.

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    Objective. To establish the relationship between HIV infection and cervical dysplasia in young women in rural South Africa. Methods. This cross-sectional study was conducted at a primary health care clinic in Vulindlela, KwaZulu-Natal. Standardised questionnaires were used to collect sociodemographic and clinical presentation data from women attending family planning and other reproductive health services. Pap smears were done using standard methods. Pap smear data were linked to HIV serostatus. Results. Four hundred and sixty-six women were included in the study. The median age was 24.3 years (range 15 - 55 years), and 80% were younger than 30 years. The HIV prevalence rate was 24.5% (95% confidence interval: 20.7 - 28.7%) and the prevalence of abnormal Pap smears was 16.9 - 6.4% ASCUS (atypical squamous cells of undetermined significance), 9.2% LGSIL (low-grade squamous intraepithelial lesions), and 1.3% HGSIL (high-grade squamous intraepithelial lesions). The association between HIV seropositivity and abnormal Pap results was statistically significant (p < 0.05). Conclusion. There is a need for more data on cervical changes in HIV co-infected women and for review of guidelines on selective Pap smear screening in high HIV prevalence settings such as sub-Saharan Africa and where access to antiretroviral treatment remains limited

    HIV incidence in young girls in KwaZulu-Natal, South Africa - public health imperative for their inclusion in HIV biomedical intervention trials.

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    Young women are particularly vulnerable for acquiring HIV yet they are often excluded from clinical trials testing new biomedical intervention. We assessed the HIV incidence and feasibility of enrolling a cohort of young women for potential participation in future clinical trials. Between March 2004 and May 2007, 594 HIV uninfected 14–30 year old women were enrolled into a longitudinal HIV risk reduction study in KwaZulu-Natal, South Africa. The overall HIV prevalence at screening in young girls below the age of 18 years was 27.6 % compared to 52.0 % in the women above 18 years, p<0.001. HIV incidence was 4.7 [95 % Confidence interval (CI) 1.5–10.9) and 6.9 (95 % CI 4.8–9.6)/100 women years (wy), p = 0.42 and pregnancy rates were 23.7 (95 % CI 14.9–35.9) and 16.4 (95 % CI 12.9–20.6)/100 wy, p = 0.29, in the women below and above 18 years respectively. Retention was similar in both groups (71.0 vs. 71.5 %, p = 0.90). This study demonstrates that the inclusion of young girls between the ages of 14 and 17 years in longitudinal studies is feasible and their inclusion in clinical trials would maintain scientific integrity and power of the study

    A model to manage community participation in clinical health research

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    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
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