Here’s what I did for research:
- Secondary research: Desk research about stigma, strategy documentation to explore interventions
- Primary and contextual research: interviews with domain experts on stigma and with persons with a mental illness
- Participatory research: workshop with designers on objects
Secondary research
I conducted a literature review of books, articles and films from specialists in the social psychology of stigma to understand the theoretical contexts and landscape of previous initiatives. The objective with this method is to get a better sense of current effort and where they worked and didn’t work. This research lead me to narrow down to one key area – something I realized after consuming Umberto Eco’s work on how to narrow a thesis topic. External research allowed me to understand the problem space and the complexity of success metrics. The output of this work was a narrowing down of areas of inquiry and insights on what gaps to address and greater clarity on possible design methods to use (space vs. object) and much of the secondary research would also shape things like the diagrams I created such as the ecosystem map. The bibliography appears elsewhere on this site at the end of this document, and full analysis from secondary research is available upon request.
Primary research
Primary research via interviews with subject domain experts in self-stigma
John Donne most famously noted that “No man is an island entire of itself; every man is a piece of the continent, a part of the main”[1]; while those who experience mental illness understand that experience in one way, the circle of people around them help explain complexity of systems that affect stigma. The objective of this method was to understand what it’s like in particular to deliver care around stigma by domain practitioners. To understand research gaps, I partnered with two key researchers – a contact at New York Association of Psychiatric Rehabilitation Services, Inc., and a contact at the Mental Health Recovery Lab at John Jay College of Criminal Justice who use narrative and Cognitive Behavior Therapy as part of ‘treatment’ for schizophrenia. I interviewed a psychiatrist and psychiatric social worker, and a small Mural Arts team working on a public health initiative within the City of New York’s Health department. Their scale remained fairly large for my work considering the timeline, but it was vital for me to be able to speak to the team not only to understand potential pitfalls to avoid. A key insight came from Alyssa, the psychiatric social worker at an in-patient facility in Brooklyn whom I found via a women’s networking group. Much of my work would be influenced by her unique position – employed by a ‘traditional’ healthcare provider, but with a mandate to provide more ‘recovery oriented care’. The outcome of the interviews clarified how narrow an audience to work with – to keep broad to the openness of many conditions rather than to focus on one. It was also important to gain multiple stakeholders perspectives, since they on some level could potentially play a role in a design intervention.
Primary research via interviews with subject domain experts with personal lived experience (mental health consumers)
The objective of this research method was to understand the stories of people living with mental illness and what wasn’t working in their experience around stigma. I interviewed a number of mental health consumers – both students at the school who responded to a paper advertisement I plastered across the campus, but also referrals of people from my various personal and professional networks and attended support groups. I was able to better understand the needs, pain points with current solutions. Knowing what works and what doesn’t work and the criteria for what someone would want to use a potential intervention is important especially for a stigmatized topic – how might I create the right level of respect, comfort, privacy and maturity in my interventions.
I was also able to dive into a more intimate level of interviewing to focus more on how the current ‘solutions’ used for their illness worked – or didn’t work, and more of the ‘how’ in these interventions – when, where, why and how often something is used, for example. While I believe strongly in the principles of participatory design and co-creation, I did want to dive more deeply into personal experiences in a safe environment focused on one person and an interviewer; for future work I would incorporate more co-creation to evolve the research.
The outcomes of this method wasn’t just clarity but helping me understand the role of empathy in design as well. The interviews led me to understand the variety of self-stigma. Even though their experiences varied – ages, hospitalizations, relationship with stigma – the commonalities around medication, identity, and the need for design all helped create voices that I wanted to honor in my work. I decided to keep things broad and not do personas and focus instead on using types of self-stigma (medication, beginning of treatment and shame) as a way to narrow down the work. I’ve done many personas and find them invaluable, but this was a choice to also do them properly and be data driven, something I was unable to properly do in the time and scenario (i.e. ‘lack of client data’). There’s a challenge in not having data driven personas, so keeping this work high level to look at the insights rather than focus on personas at this point made sense. I’m also very aware of the idea of creating specific personas and their use cases, while I was interested in broadening this to address mental illness as a topic rather than narrowing it down to particular demographic – diseases, ages, etc. It would be interesting as part of the research if extending this project to actually do this and understand secondary personas’ needs as well (physicians, family support etc.). In future work I’d tackle personas to help narrow down implementation of the work, especially as I tackle options like augmented reality.
Primary research via interviews with designers
The objective of this research method was to hone in a bit more on the relationship of of objects and location – where things are used. I held a workshop with designers and a professor in my Transient Identities cluster in my Thesis 1 class to better understand the connection between ‘comfort objects’ and location – objects in our lives we feel deeply connected to, to see how and where they have the potential to be healing design interventions, and the stressors that trigger use. Location and scale have been design methods to explore, and the workshop helped me understand how to decouple the object from any one location. It allowed me to think of reflectiveness in object use – do people understand the emotional connections they have to objects, and do they share that level of understanding with others in their life. On some level, my work is centered around mental illness and identity, but think there are interesting areas of exploration around emotion and objects and our relationship to them as well. I also found the mix of designer skills in our group a key area of insight – from fashion to set design to graphic design to strategy to UX to architecture, what commonalities across designers would we be able to find about objects? The outcome was a way to think about that reflectiveness and that location could play a role in this work, but not so much as a set ‘shrine’ or ‘room’ to participate in. Some measure of flexibility is important, especially important in a highly mobile society.
[1] “No Man Is An Island Poem By John Donne – Poem Hunter”. PoemHunter.com. N.p., 2017. Web. 6 Apr. 2017.