Abstract
Background
Political, economic and climate events continue to bring the dismantling of communities and creation of new ones. Understanding successful models of adaptation and working with communities to address their health and wellbeing needs requires ethically sound public health research. Community-Based Participatory Research (CBPR) has been proposed as an equitable, empowering partnership approach to collaborative health research that encapsulates analysis, advocacy and action for the future wellbeing of communities. Meanwhile, a strong interest in ethical implications of CBPR continues in international literature, yet with a notable lack of research that captures the experience of researchers who had ethical challenges in their CBPR studies. The aim of this research was to address this lack of evidence by exploring those experiences of CBPR researchers internationally.
Methods
An innovative data collection method was designed utilising a purpose-built blog. This internet-based, qualitative online study enabled asynchronous international data collection on the blog. Participants were researchers with experience of CBPR and were recruited through social media platforms. Blog narratives of first-hand experiences of CBPR researchers were analysed using thematic analysis.
Results
The themes that emerged from blog data analysis were researchers' challenges with balancing participant protection and autonomy, dealing with partnership tensions, and the enduring impacts on the researchers.
Conclusions
This study enhances our understanding of ethical challenges in CBPR with evidence of enduring impacts on researchers of the 'tightrope' they walked in the interests of maintaining research integrity and ethical responsibility towards their partnering communities. Challenges arose largely from complexities of CBPR coupled with rigid regulatory structures of human research ethics review that struggles to respond adequately in the interests of communities and researchers.
Key messages
At this critical time for the future of humanity, communities can benefit from CBPR. A positive way forward for ethical review of CBPR exists for those with power to make a difference.
A Community-Based Participatory Research Study of HIV and HPV Vulnerabilities and Prevention in Two Pacific Islander Communities: Ethical Challenges and Solutions
