title: "When they see us, it's like they have seen the benefits!": experiences of study benefits negotiations in community-based studies on the Kenyan Coast.
abstract: BACKGROUND
  Benefit sharing in health research has been the focus of international debates for many years, particularly in developing countries. Whilst increasing attention is being given to frameworks that can guide researchers to determine levels of benefits to participants, there is little empirical research from developing countries on the practical application of these frameworks, including in situations of extreme poverty and vulnerability. In addition, the voices of those who often negotiate and face issues related to benefits in practice - frontline researchers and fieldworkers (FWs) - are rarely included in these debates. Against this background, this paper reports on experiences of negotiating research participation and benefits as described by fieldworkers, research participants and researchers in two community based studies.
  
  
  METHODS
  The findings reported here are from a broader social science study that explored the nature of interactions between fieldworkers and participants in two community based studies on the Kenyan Coast. Between January and July 2010, data were collected using participant observation, and through group discussions and in-depth interviews with 42 fieldworkers, 4 researchers, and 40 study participants.
  
  
  RESULTS
  Participants highly appreciated the benefits provided by studies, particularly health care benefits. Fieldworkers were seen by participants and other community members as the gatekeepers and conduits of benefits, even though those were not their formal roles. Fieldworkers found it challenging to ignore participant and community requests for more benefits, especially in situations of extreme poverty. However, responding to requests by providing different sorts and levels of benefits over time, as inadvertently happened in one study, raised expectations of further benefits and led to continuous negotiations between fieldworkers and participants.
  
  
  CONCLUSIONS
  Fieldworkers play an important intermediary role in research; a role imbued with multiple challenges and ethical dilemmas for which they require appropriate support. Further more specific empirical research is needed to inform the development of guidance for researchers on benefit sharing, and on responding to emergency humanitarian needs for this and other similar settings.
authors.affiliation: The Ethox Centre, Nuffield Department of Population Health, University of Oxford, Oxford, OX3 7LF, United Kingdom. dkamuya@kemri-wellcome.org.|KEMRI-Wellcome Trust Research Programme, Kilifi, Kenya. dkamuya@kemri-wellcome.org.
authors.forename: Dorcas M
authors.initials: DM
authors.lastname: Kamuya
authors.affiliation: The Ethox Centre, Nuffield Department of Population Health, University of Oxford, Oxford, OX3 7LF, United Kingdom. vmarsh@kemri-wellcome.org.|KEMRI-Wellcome Trust Research Programme, Kilifi, Kenya. vmarsh@kemri-wellcome.org.
authors.forename: Vicki
authors.initials: V
authors.lastname: Marsh
authors.affiliation: KEMRI-Wellcome Trust Research Programme, Kilifi, Kenya. pnjuguna@kemri-wellcome.org.
authors.forename: Patricia
authors.initials: P
authors.lastname: Njuguna
authors.affiliation: KEMRI-Wellcome Trust Research Programme, Kilifi, Kenya. pmunywoki@kemri-wellcome.org.
authors.forename: Patrick
authors.initials: P
authors.lastname: Munywoki
authors.affiliation: The Ethox Centre, Nuffield Department of Population Health, University of Oxford, Oxford, OX3 7LF, United Kingdom. michael.parker@ethox.ox.ac.uk.
authors.forename: Michael
authors.initials: M
authors.lastname: Parker
authors.affiliation: The Ethox Centre, Nuffield Department of Population Health, University of Oxford, Oxford, OX3 7LF, United Kingdom. smolyneux@kemri-wellcome.org.|KEMRI-Wellcome Trust Research Programme, Kilifi, Kenya. smolyneux@kemri-wellcome.org.
authors.forename: Sassy
authors.initials: S
authors.lastname: Molyneux
mesh_terms: D000328:Adult; D026686:Beneficence; D055812:Community-Based Participatory Research; D003906:Developing Countries; D032984:Ethics, Research; D005260:Female; D006282:Health Personnel; D006301:Health Services Needs and Demand; D006801:Humans; D007391:International Cooperation; D007630:Kenya; D008297:Male; D028681:Moral Obligations; D017008:Negotiating; D011203:Poverty; D012108:Research Personnel / Q000941:ethics / Q000592:standards / Q000639:trends; D035842:Research Subjects; D012941:Social Responsibility; D035862:Vulnerable Populations