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Lessening the Research Burden on Vulnerable Communities

Gold
Monday, March 30, 2020 • Advancing Research 2020
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Lessening the Research Burden on Vulnerable Communities
Speakers: Sarah Fathallah
Link:

Summary

This talk covers specific approaches to employ when working with vulnerable populations, starting with a definition of vulnerability, then discussing how to ensure that researchers remain safe, respectful, fair, and culturally appropriate. This includes: choosing the right research methods for the participants, topic, and context at hand; recruiting and compensating research participants; ensuring research participants are aware of their rights and potential risks for participating in the research; conducting research in a trauma-informed way; managing participant data by ensuring collected information doesn’t put them at risk; communicating design research findings in a respectful manner.

Key Insights

  • Long, in-depth interviews may be inappropriate or harmful when working with vulnerable populations.

  • Vulnerability is multidimensional and often invisible; appearances can be deceiving.

  • Recruitment through cultural brokers and local leaders fosters trust and fairness.

  • Offering collective or in-kind compensation can be more culturally appropriate than individual cash payments.

  • Using local proverbs can improve participant understanding of informed consent in low literacy contexts.

  • Researchers must establish referral pathways to address trauma or crises uncovered during studies.

  • Minimizing collected data and avoiding identifiable photos reduces privacy risks.

  • Giving participants control over their data and imagery enhances ethical research partnerships.

  • Community advisory boards can validate research findings and ensure accurate representation.

  • Embedding research within community-led processes reduces the extractive nature of typical methods.

Notable Quotes

"Naming is an exercise in power when what is being named has been historically erased."

"Vulnerable communities aren't always carrying signs with the word vulnerability spelled out on their forehead."

"You cannot force a dog to run — illustrating that participants have the liberty to stop or skip uncomfortable questions."

"We structured the research around helping them fill out their housing application at the same time, so we were mindful of their time and they would also get something out of it."

"Compensation in cash or something as close to cash as possible is the best way to go, but sometimes collective donations work better."

"Researchers are not trained mental health professionals, so having referral paths is essential when issues arise."

"It's unwise for us to intervene when we're not equipped to close the doors that would be opened in doing so."

"We allowed participants to look at all the photos taken and decide which ones to keep or delete."

"Community advisory boards were elected by their peers to review findings and ensure accuracy."

"Ways to reduce extraction in research is by embedding community-led practices rather than holding the keys to knowledge ourselves."

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