Rosenverse
Lessening the Research Burden on Vulnerable Communities

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

  • •

    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."

Ask the Rosenbot
Sam Proulx
Designing For Screen Readers: Understanding the Mental Models and Techniques of Real Users
2021 • Civic Design 2021
Gold
Jennifer Strickland
Adopting a "Design By" Method
2021 • Civic Design 2021
Gold
Dan Ward
Failure Friday #1 with Dan Ward
2025 • Rosenfeld Community
Jennifer Strickland
Fireside Chat: How Design Addresses a World on Fire
2022 • Civic Design Community
Shanti Mathew
Civic Design at Scale: Introducing the Public Policy Layer Cake
2021 • Civic Design 2021
Gold
Kevin M. Hoffman
Theme 2: Enterprise Team Journey
2019 • Enterprise Experience 2019
Gold
Emily DiLeo
Stronger Together: Lessons Learned from UX Research Ops
2024 • DesignOps Summit 2024
Gold
Steve Portigal
Discussion
2015 • Enterprise UX 2015
Gold
Roberta Dombrowski
Making Research a Team Sport
2022 • Advancing Research 2022
Gold
Mike Oren
Design Research Strategy & Strategic Design Research
2022 • Advancing Research Community
Sean Fitzell
Craft of User Research: Building Out Jobs to be Done Maps
2021 • Advancing Research 2021
Gold
Sarah Fathallah
A Typology of Participation in Participatory Research
2023 • Advancing Research 2023
Gold
Sam Proulx
Prototype Reviews, People With Disabilities, and You
2021 • DesignOps Summit 2021
Gold
Dharani Perera
The mandala of service design: unlocking alignment and action through service design
2025 • Advancing Service Design 2025
Gold
Ruzanna Rozman
Getting in Flow with Your Team
2024 • DesignOps Summit 2020
Gold
Aurobinda Pradhan
Introduction to Collaborative DesignOps using Cubyts
2022 • DesignOps Summit 2022
Gold

More Videos

Shipra Kayan

"The rebrand caused our NPS to plummet and freaked out our executives — that was the trigger to get serious."

Shipra Kayan

How we Built a VoC (Voice of the Customer) Practice at Upwork from the Ground Up

September 30, 2021

Peter Morville

"Changing culture is hard because we’re willing to change actions but resistant to changing beliefs."

Peter Morville

The Architecture of Understanding

May 13, 2015

Renee Reid

"Having those tough conversations with C-Suite execs, delivering findings with unwavering voice because you know the customer."

Renee Reid

Becoming a ResearchH.E.R (Highly Enterprise Ready)

June 3, 2019

Dane DeSutter

"Gesture and embodied actions will be a key tool for understanding user experience as computing moves beyond traditional screen-based interactions."

Dane DeSutter

Keeping the Body in Mind: What Gestures and Embodied Actions Tell You That Users May Not

March 26, 2024

Sam Proulx

"Multiple payment providers aren’t just a feature; they’re an accessibility lifeline for people who can’t read or reach their credit card easily."

Sam Proulx

Online Shopping: Designing an Accessible Experience

October 3, 2023

Andrew Custage

"Three quarters of users who fail their mission don’t come back, risking lost revenue and market share."

Andrew Custage Michael Mallett

The Digital Journey: Research on Consumer Frustration and Loyalty

March 29, 2023

Shelby Switzer

"The nitty gritty is a space to become resources for each other so people know who to talk to when they have questions."

Shelby Switzer

Making Space for Community Knowledge-sharing in a Distributed World

December 10, 2021

Llewyn Paine

"If we want our value to be defined as anything other than studies run, we must learn how to trace and articulate the actual business impact."

Llewyn Paine

Coexisting with AI: A practical guide for researchers to navigate tools, ethics, and integration

March 11, 2025

Robin Beers

"Researchers make customers visible inside the organization, but also help the organization learn about itself."

Robin Beers

Navigating organizational systems: Rethinking researcher’s role in driving change

March 13, 2025