Developing guidelines for culturally relevant informed consent: an example from Lebanon

This study addresses the prominent gap in literature and practice by exploring the facilitators and barriers to informed consent and developing culturally relevant informed consent guidelines in Lebanon. Utilizing a Design Thinking (DT) framework combined with Participatory Action Research (PAR), the study aimed to: i) explore what constitutes culturally relevant informed consent in this context, according to both researchers and affected communities; and ii) use these insights to create a guideline aimed at enhancing informed consent processes for vulnerable populations involved in mental health research. The study revealed that motivations for participation, trust-building, and timing are critical yet often overlooked aspects in informed consent processes. Language and literacy barriers, along with power imbalances, present significant challenges that can be mitigated by involving community members and trained interpreters. Trust-building, especially in long-term studies, requires sustained relationships and recognizing participants' intrinsic value. Timing and clarity in consent forms, along with concise and straightforward communication, are essential for genuine informed consent. The study also highlighted the impact of gender, nationality, and community support in research participation, underscoring the need for culturally sensitive research practices. Recommendations include using audio-visual methods and the "Teach Back Method" to enhance understanding and engagement. This research emphasizes the importance of inclusive and participant-centric approaches in informed consent processes. The collaborative development of the guideline ensured diverse perspectives, leading to a comprehensive and relevant outcome. Future research should focus on testing the guideline.