Article type
Abstract
"Background
In infectious disease clinical trials, community engagement (CE) concerns active, ongoing relationships between researchers and stakeholders (communities) to benefit the research. Most qualitative evidence syntheses (QES) focusing on CE in clinical trials have only assessed the effectiveness of CE on public health interventions, health outcomes, health equity, and health promotion.
Objectives
This QES, however, aimed to identify and synthesise barriers and facilitators of successful CE in infectious disease clinical trials in low- and middle- income countries (LMIC), and to identify and synthesise strategies for engaging community stakeholders in such trials by applying the method of synthesis by storyboarding.
Methods
Since data on barriers, facilitators, and strategies of CE are likely captured qualitatively, only primary studies using qualitative methods for data collection and analysis were included. Screening and data extraction were done in duplicate and followed by critical appraisal. 26 papers were identified and synthesised through the multi-step process of storyboarding (Figure 1). This involves creating images of meaning from identified texts, connecting these images in storyboards, interpreting storylines emerging from the storyboards, and iteratively refining and redrawing key ideas in a consolidated first-person narrative.
Results
Internal tensions experienced by individuals involved in CE emerged as a central theme. Factors contributing to this included confusion regarding the expectations of individual roles in CE, contrasting experiential versus scientific knowledge, differences in social structures, money, accessibility, and limited time. Should these factors be negotiated with care, what seems like barriers can, however, simultaneously function as facilitators of CE. For example, while social hierarchy can limit access of one group to another, negotiating interaction through respect for local communities’ social structures can facilitate engagement. Being responsive to the unique characteristics of the context one engages in, continuously facilitating active communication between all stakeholders, and investing time and reflective energy into the process, were highlighted as key strategies to successful CE.
Conclusions
Storyboarding allowed emergent themes to be presented in integrated, personal ways. We propose that this can facilitate interpretation of review findings to move beyond cognitive understanding towards behavioural change.
Acknowledgements
Project is part of EDCTP2 programme supported by the European Union (TMA2020CDF-3204).
"
In infectious disease clinical trials, community engagement (CE) concerns active, ongoing relationships between researchers and stakeholders (communities) to benefit the research. Most qualitative evidence syntheses (QES) focusing on CE in clinical trials have only assessed the effectiveness of CE on public health interventions, health outcomes, health equity, and health promotion.
Objectives
This QES, however, aimed to identify and synthesise barriers and facilitators of successful CE in infectious disease clinical trials in low- and middle- income countries (LMIC), and to identify and synthesise strategies for engaging community stakeholders in such trials by applying the method of synthesis by storyboarding.
Methods
Since data on barriers, facilitators, and strategies of CE are likely captured qualitatively, only primary studies using qualitative methods for data collection and analysis were included. Screening and data extraction were done in duplicate and followed by critical appraisal. 26 papers were identified and synthesised through the multi-step process of storyboarding (Figure 1). This involves creating images of meaning from identified texts, connecting these images in storyboards, interpreting storylines emerging from the storyboards, and iteratively refining and redrawing key ideas in a consolidated first-person narrative.
Results
Internal tensions experienced by individuals involved in CE emerged as a central theme. Factors contributing to this included confusion regarding the expectations of individual roles in CE, contrasting experiential versus scientific knowledge, differences in social structures, money, accessibility, and limited time. Should these factors be negotiated with care, what seems like barriers can, however, simultaneously function as facilitators of CE. For example, while social hierarchy can limit access of one group to another, negotiating interaction through respect for local communities’ social structures can facilitate engagement. Being responsive to the unique characteristics of the context one engages in, continuously facilitating active communication between all stakeholders, and investing time and reflective energy into the process, were highlighted as key strategies to successful CE.
Conclusions
Storyboarding allowed emergent themes to be presented in integrated, personal ways. We propose that this can facilitate interpretation of review findings to move beyond cognitive understanding towards behavioural change.
Acknowledgements
Project is part of EDCTP2 programme supported by the European Union (TMA2020CDF-3204).
"