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Background: There is mounting global demand for accurate information and building of a robust evidence bases within public health and clinical medicine. This has caused enormous pressure on researchers and research organizations to generate an increasingly high turnover of projects and results. Traditionally participation rates in epidemiologic studies in African communities have been much higher than those in the West. Due to the increased pressure for results, certain target areas in Africa are now experiencing extremely frequent and high-intensity involvement within their communities from research groups.
Local development projects often undergo a period of community consultation that could fall within the description of research but the participation of individuals within a community in such research can be expected as it may define the presence of type of local services. By contrast, there are a number of community based research projects designed to evaluate health interventions that may only result in services in the distant future. Such research includes vaccine trials, studies of insecticide treated nets or needs assessment exercises designed to stimulate national strategies. In these cases the ethical consent process tends to assume the participation is altruistic, since Ethical Review Boards specifically prohibit undue coercion (i.e. direct reward) to participate. However, this seems an unlikely motivation and does not concur with local anecdotal evidence and the normally very high level of participation in these studies remains unexplained.
In specialist areas exposed to regular research, there is evidence of increasing reluctance of communities to participate and this can be best described as ‘community fatigue’. Since research tends to be focused near expert centres, and such centres are expensive to develop, it is important to understand more about why individuals participate in community based research in order to plan strategies that minimize community fatigue.
Literature has shown that the ability of individuals to influence the participation process has been noted to depend on, among other things, the willingness of an individual; where the authority is centered; the willingness of other stakeholders (health workers, managers, and political leaders); time; motivation and worry; beliefs associated with one’s cultural background; attitude towards and perceived barriers to participation. However, it is clearly shown that factors influencing subjects’ participation in community based research have received insufficient attention resulting in little knowledge about why individuals participate in expert lead assessments within the community, which convey minimal actual benefit to that community. Understanding and complying with these factors will help to make participation processes sustainable, minimize fatigue, boost acceptability and improve understanding of community expectations. Thus, recognition in these areas may in the future direct strategies to improve recruitment and participation in community based research.
Methods: A study looking at the burden of neurological disease in Hai District, in Northern Tanzania was conducted in 2010 which had a 99% participation rate. This group was a basis of my study population. The study was descriptive in nature, including both quantitative and qualitative information. A desirable sample of 138 was obtained from a standard formula and sampling method was purposive, based on their exposure to the previous study. Interview schedules with closed and open-ended questions detailing the factors influencing individual’s participation in research were used. Data were entered in the computer, cleaned and analyzed by using computer package, Statistical Package for Social Sciences (SPSS). Double entry of data was performed for reliability of the findings.
Results: A total of 138 respondents participated in the study, 53.6% were female. The median age of the respondents was 36 years (range 15-88 years). The perception of the community towards participating into the community based research studies was found to be highly influenced by perceived benefits, more than half of the participants 864.5%; curiosity 63.0%; health belief (health concern) 54.3% and some are influenced by the topic (research topic interest) 51.4%. Moreover, it was also observed that individuals think their participation will help others in future, about 91.3%, justifying the role of significant others. Perceived control on participation in community based research was observed to be within oneself, 84.8. However, findings also show that barrier to participation may be, given a burdensome research; research studies which consume much time, including general procedures of the research, consent process, interview sessions as well as follow-up. Others barriers were research studies that pose particular challenges and risks, non confidential aspects. Regarding suggestion to the improvement of research participation, individuals requested for research studies to suit their preferences as well as conveniences. Seminars and trainings should be conducted to educate communities on what research is and its advantages to them. Lastly, feedback to the community is of important for them to see what research has improved their health.
Conclusion: Results from this study lead to the conclusion that different factors may directly improve participation in research in areas where participation has been observed to decrease instantaneously as reviewed in literatures. Factors such as age and level of education were influenced participation. Other factors are perceived benefits like health care, access to hospitals, treatment and increasing potential knowledge on research activities. Health concern, curiosity, interest in research topics, less time in the general research procedures, confidentiality, non burdensome, as well as risk free research motivate participation. The findings are therefore helpful in finding direction for strategies to improve recruitment effort. Promotional campaigns to increase awareness of the benefits and confidential aspects of research may be necessary to increase participation among certain populations and evaluations of such strategies are also necessary.
Recommendation: Future research should address the quality of answers from individuals within the community so as to improve validity of the research studies as it was beyond the scope of the current study. Innovation in research studies should involve both the development of creative recruitment and retention techniques that optimize participation as much as possible. Future research should also explore the effectiveness of strategies used to increase participation in studies. It is further recommend that qualitative studies in the form of focus groups and one-on-one interviews should also be conducted to uncover the complex perspectives on participation. This is due to the fact that low-participation rates can compromise the external validity of research findings. Finally, community health scientists and research institutions should invest resources in community dialogues and campaigns to promote awareness of the beneficial and altruistic aspect of community based research and explain how their involvement could help to support relevant, reliable as well as rewarding research. |
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