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Developing guidelines for culturally relevant informed consent: an example from Lebanon
Sandy Chaar1, Emily Oliver2, Rayane Ali1
1Research and Development Department, War Child Holland, Beirut, Lebanon.
This study explored informed consent in Lebanon, finding trust, timing, and clear communication crucial for vulnerable populations in mental health research. Culturally relevant guidelines were developed to improve participation and understanding.
Area of Science:
- Global Health
- Bioethics
- Mental Health Research
Background:
- Informed consent processes often fail to adequately address cultural contexts, particularly for vulnerable populations.
- A significant gap exists in culturally relevant guidelines for mental health research, especially in regions like Lebanon.
- Existing literature and practices lack a comprehensive understanding of facilitators and barriers to informed consent in diverse settings.
Purpose of the Study:
- To explore facilitators and barriers to informed consent within the Lebanese context.
- To develop culturally relevant informed consent guidelines for vulnerable populations in mental health research.
- To enhance the quality and ethical integrity of informed consent processes through participant-centric approaches.
Main Methods:
- Employed a Design Thinking (DT) framework integrated with Participatory Action Research (PAR).
- Collaboratively engaged researchers and affected communities to define culturally relevant informed consent.
- Focused on identifying and addressing language, literacy, and power imbalance challenges.
Main Results:
- Motivations for participation, trust-building, and appropriate timing are critical yet often overlooked.
- Language and literacy barriers, alongside power imbalances, can be mitigated through community involvement and interpreters.
- Sustained relationships, clear communication, and methods like 'Teach Back' enhance understanding and engagement.
- Factors such as gender, nationality, and community support significantly impact research participation.
Conclusions:
- Culturally sensitive and participant-centric approaches are essential for effective informed consent in mental health research.
- The developed guideline offers a comprehensive framework for enhancing informed consent processes for vulnerable groups.
- Future research should prioritize the empirical testing and validation of the proposed informed consent guideline.
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