Disseminating results: community response and input on Kisumu breastfeeding study

Abstract

Communicating findings to study participants and their communities is a practice that often gets overlooked or receives low prioritization by research investigators, but is crucially important. The purpose of this study was to describe the process and community response to the dissemination of results from the Kisumu Breastfeeding Study (KiBS), specifically in terms of (1) community research knowledge and expectations and (2) impressions of result dissemination efforts. A qualitative evaluation was completed for 10 result dissemination events using focus group discussions (FGDs) (n = 10; total number of participants = 98). An inductive, thematic qualitative data analysis was completed in NVivo 8.0. Overall, FGD participants expressed great appreciation for being given information on the study results. Participants had a good understanding of what research entails and had specific expectations for the process, including that the community receive information about the study, not only at the end of the study but also at regular intervals throughout the study's conduct. They also wanted to receive the communications from a credible source, the principal investigator preferably. Other expectations centered on better community and research interactions and development and the use of community collaborators. Impressions of KiBS result dissemination events were positive, but suggestions for the future included having the event in a larger area, inviting more people, having more written materials, and putting the information in an entertaining format such as skits or movies. Sharing study findings with local community members is essential and beneficial to the researchers' long-term engagement with communities and importantly, the successful implementation of study findings when appropriate. It is imperative that dissemination of results be embedded as an integral part of research project planning and development.

<p>Engaging study participants in interpreting results: lessons from the TRIO study in Kenya and South Africa</p>

“…Previously, participants have decried the lack of or inadequate dissemination of study results to those who took part in the studies 14,15. Often, data are analyzed and interpreted by research teams and disseminated mainly through publications in academic journals, presentations at scientific conferences and press releases to the media16,17 without soliciting participant input on their interpretation. Such results are open to misinterpretation as the research teams, principal investigators and research leadership who live outside of the researched communities providing product design input may lack contextual knowledge of people living within the community that is key to understanding community feedback, especially for unexpected findings 15.…”

Not the last word: dissemination strategies for patient-centred research in nursing

“…(Ondenge et al, 2015) As a cross-sectional survey study, the Self-Advocacy Study offered a limited, inflexible platform for sharing ideas and concerns. Therefore, our participants and stakeholders appreciated the outlet that the dissemination event provided to raise concerns or offer suggestions about how to improve the lives of women with cancer.…”

“…Research participants want and expect trustworthy, timely information about the studies to which they consent to participate (Ondenge et al., 2015). As a cross-sectional survey study, the Self-Advocacy Study offered a limited, inflexible platform for sharing ideas and concerns.…”

Relational research ethics and disengagement from collaborative research projects in higher education: A conceptual analysis

“…Second, researchers have an obligation to report back to the participants and possibly to discuss the findings with them. This obligation is crucial in some domains, such as the medical field (Ferris and Sass-Kortsak 2011;Ondenge et al 2015). Disengaging from research projects may deny the participants this right to knowledge and engagement, depending on the consequences of such disengagement.…”