Why participatory design is essential when designing in vulnerable communities?

Or how I designed accessible and inclusive solutions with women affected by forced marriage

Nims šŸ‘©šŸ½ā€šŸ’»
UX Collective
Published in
9 min readJan 11, 2022
A illustration of a diverse crowd
From Blush Design

Over the past months, I have taken a particular interest in research in the context of marginalised & vulnerable communities. It has become the main focus of my doctorate studies. As one can imagine, I have been preoccupied with reading dozens and dozens (it is really never-ending) of papers, utilising the learnings for my own study on women affected by domestic abuse and forced marriages. Working with such a vulnerable community made me aware of the true power of participatory design. It was not only valuable but an essential part in successfully designing in such a vulnerable setting (that is a strong claim, isnā€™t it?). Wondering what participatory design is?

Participatory Design is an approach that invites stakeholders into the design process as a means of better understanding their challanges and needs.

Participatory design was incepted in the 1960s and has since emphasised power dynamics and social hierarchies between researchers and users as a central issue in technology design. Lee et al. [1] set an exemplary work on how to effectively make use of the method in their paper on designing social robots for older adults with depression. Over the course of several weeks, they conduct several workshops with multiple participants and researchers came together to design and critically reflect on social robots (Please do go and read it! It is a fantastic study).

So why is it so powerful?

Traditionally, participants take a passive role when it comes to HCI research, and are often reduced to an informant supplying the necessary information, allowing us designers to form our assumptions. I think every UX designer has heard the famous words: ā€œUsers donā€™t actually know what they wantā€. Thus we often see ourselves (the designer) as the expert, while believing users to be naive.

However, with the rising interest in research in sensitive settings or with marginalised communities, we as researchers have to keep in mind our own membership, identities and therefore our potential lack of knowledge about that communitiesā€™ lived experiences. By shifting the role of the users from an informant to being the experts of their own experience, we can minimize misrepresentation of the given community in regards to their behaviour, challenges and values by incorporating them as an active part and embracing their experience and meaning-making as legitimate sources of knowledge [2].

Take my research on forced marriages as an example. Is it realistic and not even naive to believe that based on some interviews with the women, I would be capable of completely understanding the complex social structures, values, challenges and needs of these women? By making use of the participatory method, I was able to learn much more in-depth about their situation and was able to come up with different technological ideas of technologies with them in different workshops, enabling technology design that would have not been possible otherwise.

Designing more inclusively

We researchers have our own values and assumptions when we are interpretation the responses of our participants based on the social settings we come from and the exposure we have received over the years. Lee et al. [1] highlight how many Human-Robot Interaction researchers have an embedded stereotype image of older adults, which prompted many older adults to reject the robots despite their perceived usefulness.

ā€œConsidering our users as naive or even impaired in some specific way, our design is likely to try to compensate for the impairment, configuring the variety of people who might use it in terms of that specific impairment and neglecting their many and varied other qualitiesā€ [3]

Considering my example from before makes the danger of considering our users as naive, impaired or as victims even more evident. By incorporating users in the design. process, I was much more aware of ethics and accessibility. It was not uncommon for the women to point our design flaws which were not accessible to them or even worse, could have actually put them into great danger. Consider this: is it feasible or even secure to design a downloadable app for women facing abuse? Often they are controlled by their perpetrator and have little to no privacy, having their mobile phone usage regulated or checked is not uncommon. Would not the existence of such an app put them further at risk? Should we consider password protection? In a workshop, a participant highlighted how her partner would have suspected her of ā€œwrongdoingsā€ and just seeing she had a password anywhere, would have been enough to further exercise control or violence.

Participatory design addresses the problem by balancing the social hierarchy and dynamics. You see, by putting the researcher equal to the user, participatory design allows for mutual learning and diminishes the imbalance created by having the roles of an ā€œexpertā€ and ā€œuserā€. In this setting, users are not only informants but also learning about design and technology from the researchers and getting to put their acquired knowledge to use. At the same time, we researchers also do take the role of a student and learn about the communities values and lived experiences, allowing us to make better-informed design decisions by cultivating critical discussions with the users.

Empowering Users

Throughout the workshops, I realised what kind of relevance, beyond research, this practice has on the participants. Many if not all of the women saw these workshops as a means to make a difference in their own and other womenā€™s lives, a common theme across all workshops. It was an opportunity for them to take the pain they experienced and put it into something that would help others avoid the same pain and I wonder if it was also a way for them to process their experiences. They needed their voices heard, they wanted to be put in control of their experience.

All the women who participated in the workshop were in their late teens or early twenties and had to escape from their families with the help of an NGO or the police. Thus, it is not hard to understand why they might feel like they are not in control of their bodies and lives. The women expressed how participating in the research, gave them an outlet, meaning and the feeling of being a part of something ā€œbiggerā€.

Great, how do you do it?

Now that you have seen the great advantages of participatory design and learned how valuable it can be in the appropriate setting, how do you really use it? It is not as hard as you think! There are different ways to accomplish a creative space for mutual learning in workshops, here are some activities and exercises I have personally used despite focus groups and group discussions.

A sketch of a person drawing on the whiteboard while three participants watch and provide their input
The Pen: The designer acts as the ā€˜Penā€™ and draws out the participants ideas, adjusting and extending them in real-time based on their inputs.

The Pen

I read about this method initially in the aforementioned study by Lee et al. [1]. The setting is quite simple, as the designer you act as the ā€˜Penā€™ for the users to sketch out their ideas and suggestion, improving any flaws based on their input in real-time. The set-up can be either one ā€˜Penā€™ per user or one ā€˜Penā€™ for the whole group. I have often opted to go with the former setting since it has proved itself to be much more resourceful. I personally like this method a lot because people I have worked with felt anxious about drawing their ideas on paper due to their perceived lack of creativity or skills. It lowers the bar for participation while still giving the users control over the design content.

One idea that was generated in this way was a solution to the aforementioned security problem when it comes to designing technology for women without facilitating misuse or putting them at further risk. Together, we were able to come up with an idea for an app, which looks like a to-do list at first glance, but through an inconspicuous ā€˜fakeā€™ button, users would reach a hidden tab of the app where they could find necessary information for help.

Round Robin

This is one of the exercises I feel work best in later workshops once everyone is a bit more comfortable with each other. The general set-up of the idea is to sketch an idea and then pass the paper on to the next person. It allows the ideas to evolve and incorporates different viewpoints and knowledge.

I remember an instance where one participant came up with an idea to create checklists that included tasks to perform before escaping. For example, she reported how she had a lot of trouble after leaving her family since a lot of important documents were missing and wished someone would have told her. This idea was then extended by another participant who added another checklist that included tasks to protect yourself digitally while still living at home because this was something that had caused her a lot of issues. One woman even created a checklist on ā€˜how to buy yourself time if your parents want to forcibly marry you and included things such as ā€˜shaving off your hairā€™. It had worked for her since no guy would want a ā€˜bald brideā€™. The participants kept extending on the ideas, resulting ultimately in an ā€œadvice bookā€ rather than just a checklist.

A sketch showing how an idea gets extended in each iteration or round
Round Robin: With each pass, the drawing gets extended by the next person, extending the idea with their knowledge for a more complete picture.

And these are just two of them. I will be linking more exercises and tools which I have come across at the end of the article for you to read and enjoy.

Conclusion

I want to highlight again that we as researchers have to keep in mind our own membership, identities and therefore our potential lack of knowledge about that communitiesā€™ lived experiences. Even beyond the advancement of design, it can empower users and help them take their live sin control. Yes, participatory design is not the solution to every problem, and might not be even needed in many user studies, however, when designing with vulnerable populations, I would go as far and claim that it is essential to create an inclusive and accessible design. Furthermore, I believe that we researchers still have so much to learn, and participatory design gives us the opportunity to do so.

Reading Resources

UX Magazine
Participatory Design In Practise
https://uxmag.com/articles/participatory-design-in-practice

UXDesign
Participatory Design in Practise
https://uxdesign.cc/participatory-design-in-practice-bf5bfe3f529

Academic Papers:

Claudette Pretorius, Darragh McCashin, Naoise Kavanagh, and David Coyle. 2020. Searching for Mental Health: A Mixed-Methods Study of Young Peopleā€™s Online Help-seeking. Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 1ā€“13. DOI:https://doi.org/10.1145/3313831.3376328

Jerry Alan Fails, Mona Leigh Guha and Allison Druin (2013), ā€œMethods and Techniques for Involving Children in the Design of New Technology for Childrenā€, Foundations and TrendsĀ® in Humanā€“Computer Interaction: Vol. 6: ā„–2, pp 85ā€“166. http://dx.doi.org/10.1561/1100000018

Greg Walsh, Elizabeth Foss, Jason Yip, and Allison Druin. 2013. FACIT PD: a framework for analysis and creation of intergenerational techniques for participatory design. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems(CHI ā€˜13). Association for Computing Machinery, New York, NY, USA, 2893ā€“2902. DOI:https://doi.org/10.1145/2470654.2481400

Liam Bannon, Jeffrey Bardzell, and Susanne BĆødker. 2018. Reimagining participatory design. interactions 26, 1 (January ā€” February 2019), 26ā€“32. DOI:https://doi.org/10.1145/3292015

Claudette Pretorius, Darragh McCashin, Naoise Kavanagh, and David Coyle. 2020. Searching for Mental Health: A Mixed-Methods Study of Young Peopleā€™s Online Help-seeking. <i>Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems</i>. Association for Computing Machinery, New York, NY, USA, 1ā€“13. DOI:https://doi.org/10.1145/3313831.3376328

Works Cited

[1] Hee Rin Lee, Selma Å abanović, Wan-Ling Chang, Shinichi Nagata, Jennifer Piatt, Casey Bennett, and David Hakken. 2017. Steps Toward Participatory Design of Social Robots: Mutual Learning with Older Adults with Depression. In Proceedings of the 2017 ACM/IEEE International Conference on Human-Robot Interaction (HRI ā€˜17). Association for Computing Machinery, New York, NY, USA, 244ā€“253. DOI:https://doi.org/10.1145/2909824.3020237

[2] John McCarthy and Peter Wright. 2007. Technology as Experience. The MIT Press.

[3] Sarah Foley, John McCarthy, and Nadia Pantidi. 2019. The Struggle for Recognition in Advanced Dementia: Implications for Experience-Centered Design. ACM Trans. Comput.-Hum. Interact. 26, 6, Article 40 (December 2019), 29 pages. DOI:https://doi.org/10.1145/3359594

Sign up to discover human stories that deepen your understanding of the world.

Free

Distraction-free reading. No ads.

Organize your knowledge with lists and highlights.

Tell your story. Find your audience.

Membership

Read member-only stories

Support writers you read most

Earn money for your writing

Listen to audio narrations

Read offline with the Medium app

Published in UX Collective

We believe designers are thinkers as much as they are makers. Curated stories on UX, Visual & Product Design. https://linktr.ee/uxc

Written by Nims šŸ‘©šŸ½ā€šŸ’»

UX Designer, Software Developer & Food Lover. Curious about human behaviour & nerds out over how tech can help people. Currently completing my PhD at @UZH šŸŒæ

No responses yet

What are your thoughts?