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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
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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

  • Vulnerability is multi-dimensional and often not visually apparent, requiring researchers to look beyond surface impressions.

  • Traditional long, in-depth interviews often do not suit vulnerable participants due to cultural, emotional, or logistical reasons.

  • Working with local leaders and cultural brokers is essential to ethically recruit participants, especially in collectivist or mistrustful communities.

  • Monetary incentives should be balanced carefully to acknowledge participants' time without undermining voluntary informed consent.

  • Adapting consent processes using local languages, proverbs, and culturally meaningful explanations improves participant understanding.

  • Research teams must prepare for emotional distress triggers by establishing referral pathways and involving mental health professionals.

  • Minimizing data collection to only necessary information and avoiding identifiable photos can reduce participant risk.

  • Allowing participants to review and control usage of their images or data empowers them and reduces the extractive nature of research.

  • Community advisory boards reviewing research findings create accountability and improve accuracy in representing participants.

  • Embedding community-led research practices reduces extraction and fosters more inclusive, respectful outcomes.

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."

"Interviews may not be the most respectful or culturally appropriate research method to use."

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

"You cannot force a dog to run—illustrating participants' liberty to stop an interview or skip uncomfortable questions."

"Researchers are not trained mental health professionals or social workers, so we need referral paths for issues that arise."

"One of the best strategies is to simply not ask for any more information than needed and not take photographs of identifiable features."

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

"Community advisory boards were included as reviewers of findings to ensure accurate portrayal of stories."

"Research and design processes are by and large extractive, no matter how democratic or participatory they may look."

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