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1.
Dev World Bioeth ; 13(1): 1-9, 2013 Apr.
Article in English | MEDLINE | ID: mdl-23433316

ABSTRACT

Fieldworkers (FWs) are community members employed by research teams to support access to participants, address language barriers, and advise on culturally appropriate research conduct. The critical role that FWs play in studies, and the range of practical and ethical dilemmas associated with their involvement, is increasingly recognised. In this paper, we draw on qualitative observation and interview data collected alongside a six month basic science study which involved a team of FWs regularly visiting 47 participating households in their homes. The qualitative study documented how relationships between field workers and research participants were initiated, developed and evolved over the course of the study, the shifting dilemmas FWs faced and how they handled them. Even in this one case study, we see how the complex and evolving relationships between fieldworkers and study participants had important implications for consent processes, access to benefits and mutual understanding and trust. While the precise issues that FWs face are likely to depend on the type of research and the context in which that research is being conducted, we argue that appropriate support for field workers is a key requirement to strengthen ethical research practice and for the long term sustainability of research programmes.


Subject(s)
Clinical Trials as Topic/ethics , Community-Based Participatory Research/ethics , Conflict of Interest , Conflict, Psychological , Friends , Research Personnel/ethics , Researcher-Subject Relations/ethics , Trust , Adult , Clinical Trials as Topic/standards , Clinical Trials as Topic/trends , Community-Based Participatory Research/standards , Community-Based Participatory Research/trends , Ethics, Research , Family Characteristics , Female , Friends/psychology , Health Services Accessibility/ethics , Humans , Informed Consent/ethics , Kenya , Negotiating , Qualitative Research , Respiratory Syncytial Virus Infections/diagnosis , Respiratory Syncytial Viruses/isolation & purification , Social Environment , Surveys and Questionnaires , Trust/psychology , Young Adult
2.
PLoS One ; 10(5): e0126671, 2015.
Article in English | MEDLINE | ID: mdl-25978465

ABSTRACT

Consent processes have attracted significant research attention over the last decade, including in the global south. Although relevant studies suggest consent is a complex negotiated process involving multiple actors, most guidelines assume consent is a one-off encounter with a clear 'yes' or 'no' decision. In this paper we explore the concept of 'silent refusals', a situation where it is not clear whether potential participants want to join studies or those in studies want to withdraw from research, as they were not actively saying no. We draw on participant observation, in-depth interviews and group discussions conducted with a range of stakeholders in two large community based studies conducted by the KEMRI Wellcome Trust programme in coastal Kenya. We identified three broad inter-related rationales for silent refusals: 1) a strategy to avoid conflicts and safeguard relations within households, - for young women in particular-to appear to conform to the wishes of elders; 2) an approach to maintain friendly, appreciative and reciprocal relationships with fieldworkers, and the broader research programme; and 3) an effort to retain study benefits, either for individuals, whole households or wider communities. That refusals and underlying rationales were silent posed multiple dilemmas for fieldworkers, who are increasingly recognised to play a key interface role between researchers and communities in many settings. Silent refusals reflect and reinforce complex power relations embedded in decisions about research participation, with important implications for consent processes and broader research ethics practice. Fieldworkers need support to reflect upon and respond to the ethically charged environment they work in.


Subject(s)
Informed Consent/ethics , Research Personnel/ethics , Research Personnel/standards , Research/standards , Adolescent , Adult , Cooperative Behavior , Developing Countries , Ethics, Research , Female , Humans , Kenya , Male , Middle Aged , Negotiating , Young Adult
3.
Tanzan J Health Res ; 14(2): 96-103, 2012 Apr.
Article in English | MEDLINE | ID: mdl-26591730

ABSTRACT

Despite existence of effective tools for malaria control, malaria continues to be one of the leading killer diseases especially among under-five year children and pregnant women in poor rural populations of Sub Saharan Africa. In Tanzania Mainland the disease contributes to 39.4% of the total OPD attendances. In terms of mortality, malaria is known to be responsible for more than one third of deaths among children of age below 5 years and also contributes for up to one fifth of deaths among pregnant women. This paper is based on a study conducted in a rural community along the shores of Lake Victoria in Mwanza region, North-Western Tanzania. The study explores reasons for scepticism and low uptake of insecticide treated mosquito nets (ITNs) that were promoted through social marketing strategy for malaria control prior to the introduction of long lasting nets (LLN). The paper breaks from traditional approach that tend to study low uptake of health interventions in terms of structural practical constraints--cost, accessibility, everyday priorities--or in terms of cognition--insufficient knowledge of benefits e.g. ignorance of public health messages. This paper has shown that, the majority of people who could afford the prices of ITNs and who knew where to obtain the insecticides did not necessarily buy them. This suggests that, although people tend to report cost-related factors as a barrier against the use of ITNs, there are other critical concerns at work. Without underestimating the practical factors, our study have recommended to consider critical examinations of those other concerns that hinder optimal utilization of ITN for malaria control, and the basis for those concerns.


Subject(s)
Insecticide-Treated Bednets/statistics & numerical data , Malaria/prevention & control , Mosquito Control/methods , Female , Focus Groups , Humans , Interviews as Topic , Malaria/epidemiology , Male , Observation , Rural Population , Tanzania/epidemiology
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