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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

  • Research can be emotionally taxing for participants, especially from vulnerable groups.

  • Vulnerability is multifaceted, including social, economic, and environmental dimensions.

  • Traditional methods often do not respect cultural nuances; adaptability is crucial.

  • Using local cultural references and proverbs can help in seeking informed consent.

  • Recruiting participants through local leaders builds trust and understanding.

  • Participant compensation should reflect community values, sometimes necessitating collective methods.

  • Anonymity and data safety are imperative; avoid identifiable information unless necessary.

  • Community engagement in reviewing research findings can counteract extractive practices.

  • Researchers should acknowledge their own biases and the power dynamics at play.

  • Creating a supportive team environment helps researchers manage emotional labor.

Notable Quotes

"The Tuchenia O'Hlone people are still here and continue to live on this land."

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

"The cost of research is particularly high with vulnerable communities."

"Consent can be hard to seek due to language barriers, especially in low literacy contexts."

"We needed to have referral paths for issues that may arise during the research."

"It’s important to challenge what we consider to be best practices as a design research community."

"Communities often already have ways of navigating problem exploration; we should embed those in our processes."

"The examples I shared are not exhaustive, but they call on you to evolve your practices to better serve communities."

"If a participant with access to legal aid or counsel finds that their data was shared, they have more possibilities for recourse."

"We included community members as reviewers of findings, allowing them to ensure an accurate portrayal of their stories."

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