Rosenverse

This video is only accessible to Gold members. Log in or register for a free Gold Trial Account to watch.

Log in Register

Most conference talks are accessible to Gold members, while community videos are generally available to all logged-in members.

Lessening the Research Burden on Vulnerable Communities
Gold
Monday, March 30, 2020 • Advancing Research 2020
Share the love for this talk
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

  • 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."

Ask the Rosenbot
Kristin Skinner
Five Years of DesignOps
2021 • DesignOps Summit 2021
Gold
Carl Turner
You Can Do This: Understand and Solve Organizational Problems to Jumpstart a Dead Project
2023 • Advancing Research 2023
Gold
Smitha Papolu
Theme 3 Discussion
2024 • Enterprise Experience 2020
Gold
Kristin Skinner
8 Types of Measures in Design Operations (Videoconference)
2020 • DesignOps Community
Dantley Davis
Leadership & Diversity—A Fireside Chat with Dantley Davis (Videoconference)
2020 • Enterprise Community
World Usability Day Panel Discussion (Videoconference)
2022 • DesignOps Community
Amy Thibodeau
Opening Keynote: Process and Ambiguity
2019 • DesignOps Summit 2019
Gold
Sabrina Mach
How to Design Your Design Operating Model
2021 • DesignOps Summit 2021
Gold
Dan Willis
Enterprise Storytelling Sessions
2015 • Enterprise UX 2015
Gold
Michele Marut
Research Repositories Reconsidered (Videoconference)
2019 • DesignOps Community
Laura Weiss
There is No Playbook: Leader as Coach During Challenging Times (Videoconference)
2024 • Rosenfeld Community
Peter Merholz
The Trials and Tribulations of Directors of UX (Videoconference)
2023 • Enterprise Community
Sam Proulx
Online Shopping: Designing an Accessible Experience
2023 • Advancing Research 2023
Gold
Kristin Taylor
Building Bridges Across Organizational Silos
2022 • Civic Design 2022
Gold
Victor Udoewa
Radical Participatory Design: Decolonizing Participatory Design Processes
2021 • Civic Design 2021
Gold
Jazz Improvisation as a Model for Team Collaboration
2017 • DesignOps Summit 2017
Gold

More Videos

"Emergence is when thousands of independent fish create a school with its own identity and behavior."

This Game is Never Done: Design Leadership Techniques from the Video Game World

November 6, 2017

Abby Covert

"Diagramming is this kindness that we give to ourselves to get our bearing on something that we're stuck on."

Abby Covert

Stuck? Diagrams Help (Videoconference)

October 27, 2022

Steve Portigal

"The richness of mixed methodologies is often lost on those who only value metrics and consistency."

Steve Portigal Susan Simon-Daniels Tamara Hale Randolph Duke II

War Stories LIVE! Q&A-Discussion

March 30, 2020

Kara Kane

"Building diverse engagement options helps ensure no one is excluded due to tools or time constraints."

Kara Kane

Communities of Practice for Civic Design (Videoconference)

April 7, 2022

Caroline Vize

"Identifying the right success metrics is a major problem because execs often don’t know what to ask for."

Caroline Vize

The State of UX: Five Lessons from 2021 to Accelerate Digital Experience in 2022

March 9, 2022

Lada Gorlenko

"Sometimes growth is vertical, but we might take different paths and grow sideways and literally move."

Lada Gorlenko

Theme 3: Introduction

June 10, 2021

Jay Bustamante

"MidJourney’s AI showed white men consistently as CEOs and professors, revealing systemic bias in training data."

Jay Bustamante

Navigating the Ethical Frontier: DesignOps Strategies for Responsible AI Innovation

October 2, 2023

Marjorie Stainback

"Don’t schedule your pilot during the holidays unless you want only one graduate out of the entire class."

Marjorie Stainback Kelsey Kingman

Transforming Strategic Research Capacity through Democratization

October 24, 2019

Rachael Dietkus, LCSW

"Forcing someone to take vacation in a toxic environment is like putting a fish from a dirty bowl into a clean one temporarily."

Rachael Dietkus, LCSW Uday Gajendar Dr. Dawn Emerick Dawn E. Shedrick, LCSW

Leading through the long tail of trauma (Videoconference)

July 13, 2022