Dataset Information

The Importance of Blood Is Infinite: Conceptions of Blood as Life Force, Rumours and Fear of Trial Participation in a Fulani Village in Rural Gambia.

ABSTRACT: BACKGROUND:Clinical trials require high levels of participation and low drop-out rates to be successful. However, collecting blood samples from individuals recruited into clinical trials can be challenging when there is reticence about blood-taking. In addition to concerns regarding the feasibility of medical research, fears of 'blood-stealing' and 'blood-selling' have ethical implications related to cultural sensitivity and informed consent. This study explores anxieties around blood-taking during a malaria treatment trial in the Gambia. METHODS:This case study is based on ethnographic research in one theoretically selected village due to the high reticence to screening for the clinical trial 'Primaquine's gametocytocidal efficacy in malaria asymptomatic carriers treated with dihydroartemisinin-piperaquine' carried out in the Gambia between 2013 and 2014. Data collection tools included in-depth interviews, participant observation, informal conversations and group discussions. RESULTS:In total only 176 of 411 habitants (42%) in the village accepted having a bloodspot taken to screen for malaria. Although trial recruitment was initially high in the village, some families refused screening when rumours started spreading that the trial team was taking too much blood. Concerns about 'loss of blood' were equated to loss of strength and lack of good food to replenish bodily forces. Families in the study village were concerned about the weakness of their body while they had to harvest their crops at the time of recruitment for the trial. CONCLUSION:A common recommendation to prevent and avoid rumours against public health interventions and trials is the provision of full and consistent information during the consent procedure, which is assumed to lead to more accurate knowledge of the purpose of the intervention and increased trial participation. However, even when information provision is continuous, the emergence of rumours can be related to times of uncertainty and perceptions of vulnerability, which are often a reflection of structural inequalities and diverging value orientations between communities and public health institutions.

SUBMITTER: O'Neill S

PROVIDER: S-EPMC4985146 | biostudies-literature | 2016

REPOSITORIES: biostudies-literature

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The Importance of Blood Is Infinite: Conceptions of Blood as Life Force, Rumours and Fear of Trial Participation in a Fulani Village in Rural Gambia.

O'Neill Sarah S Dierickx Susan S Okebe Joseph J Dabira Edgard E Gryseels Charlotte C d'Alessandro Umberto U Peeters Grietens Koen K

PloS one 20160815 8

<h4>Background</h4>Clinical trials require high levels of participation and low drop-out rates to be successful. However, collecting blood samples from individuals recruited into clinical trials can be challenging when there is reticence about blood-taking. In addition to concerns regarding the feasibility of medical research, fears of 'blood-stealing' and 'blood-selling' have ethical implications related to cultural sensitivity and informed consent. This study explores anxieties around blood-ta ...[more]

PMID: 27525652

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Project description:BackgroundAlthough many success stories exist of Village Health Workers (VHWs) improving primary health care, critiques remain about the medicalisation of their roles in disease-specific interventions. VHWs are placed at the bottom of the health system hierarchy as cheap and low-skilled volunteers, irrespective of their highly valued social and political status within communities. In this paper, we shed light on the political role VHWs play and investigate how this shapes their social and medical roles, including their influence on community participation.MethodThe study was carried out within the context of a malaria elimination trial implemented in rural villages in the North Bank of The Gambia between 2016 and 2018. The trial aimed to reduce malaria prevalence by treating malaria index cases and their potentially asymptomatic compound members, in which VHWs took an active role advocating their community and the intervention, mobilising the population, and distributing antimalarial drugs. Mixed-methods research was used to collect and analyse data through qualitative interviews, group discussions, observations, and quantitative surveys.Results and discussionWe explored the emic logic of participation in a malaria elimination trial and found that VHWs played a pivotal role in representing their community and negotiating with the Medical Research Council to bring benefits (e.g. biomedical care service) to the community. We highlight this representative role of VHWs as 'health diplomats', valued and appreciated by community members, and potentially increasing community participation in the trial. We argue that VHWs aspire to be politically present and be part of the key decision-makers in the community through their health diplomat role.ConclusionIt is thus likely that in the context of rural Gambia, supporting VHWs beyond medical roles, in their social and political roles, would contribute to the improved performance of VHWs and to enhanced community participation in activities the community perceive as beneficial.

Project description:IntroductionThe need to rapidly identify safe and efficacious drug therapies for COVID-19 has resulted in the implementation of multiple clinical trials investigating potential treatment options. These are being undertaken in an unprecedented research environment and at a higher speed than ever before. It is unclear how West African communities perceive such activities and how such perceptions influence participation in COVID-19 clinical trials. This qualitative study was conducted to assess the level of acceptability of a clinical trial on the prevention and treatment of COVID-19 in The Gambia and identify strategies to better engage communities in participating in such a trial.MethodsData were collected using digitally recorded semistructured interviews (SSIs) and focus group discussions (FGDs) in Brikama and Kanifing local government areas. These are two of the most densely populated administrative subdivisions in The Gambia, where the clinical trial was to be implemented by the MRC Unit The Gambia. 26 men and 22 women aged between 19 and 70 years, with diverse socioeconomic profiles, participated in 8 FGDs (n=36) and 12 SSIs (n=12). Thematic analysis was used to analyse the data.ResultsFear of stigmatisation of patients with COVID-19 was a recurring theme in most FGDs and SSIs, with detrimental effects on willingness to accept COVID-19 testing and home visits to follow up patients with COVID-19 and their household contacts. Preserving the privacy of individuals enrolled in the study was key to potentially increase trial participation. Trust in the implementing institution and its acknowledged expertise were facilitators to accepting the administration of investigational products to sick individuals and their close contacts.ConclusionCOVID-19 is a stigmatising disease. Developing a research-participant collaboration through an ongoing engagement with community members is crucial to a successful enrolment in COVID-19 clinical trials. Trust and acknowledged expertise of the implementing institution are key facilitators to foster such collaboration.

Project description:BackgroundThere is concern that untreated individuals in mass drug administration (MDA) programs for neglected tropical diseases can reduce the impact of elimination efforts by maintaining a source of transmission and re-infection.Methodology/principal findingsTreatment receipt was recorded against the community census during three MDAs with azithromycin for trachoma in The Gambia, a hypo-endemic setting. Predictors of non-participation were investigated in 1-9 year olds using random effects logistic regression of cross-sectional data for each MDA. Two types of non-participators were identified: present during MDA but not treated (PNT) and eligible for treatment but absent during MDA (EBA). PNT and EBA children were compared to treated children separately. Multivariable models were developed using baseline data and validated using year one and two data, with a priori adjustment for previous treatment status. Analyses included approximately 10000 children at baseline and 5000 children subsequently. There was strong evidence of spatial heterogeneity, and persistent non-participation within households and individuals. By year two, non-participation increased significantly to 10.4% overall from 6.2% at baseline, with more, smaller geographical clusters of non-participating households. Multivariable models suggested household level predictors of non-participation (increased time to water and household head non-participation for both PNT and EBA; increased household size for PNT status only; non-inclusion in a previous trachoma examination survey and younger age for EBA only). Enhanced coverage efforts did not decrease non-participation. Few infected children were detected at year three and only one infected child was EBA previously. Infected children were in communities close to untreated endemic areas with higher rates of EBA non-participation during MDA.Conclusions/significanceIn hypo-endemic settings, with good coverage and no association between non-participation and infection, efforts to improve participation during MDA may not be required. Further research could investigate spatial hotspots of infection and non-participation in other low and medium prevalence settings before allocating resources to increase participation.

Dataset Information

The Importance of Blood Is Infinite: Conceptions of Blood as Life Force, Rumours and Fear of Trial Participation in a Fulani Village in Rural Gambia.

Publications

The Importance of Blood Is Infinite: Conceptions of Blood as Life Force, Rumours and Fear of Trial Participation in a Fulani Village in Rural Gambia.

Similar Datasets

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