The main questions I used for my questions included:
- Where to focus in the system: should I be creating an alternative system of care, or work within existing systems? Who should provide care – trained medical professionals, peers or both, and what needs to be done to design such a system where expertise differs? Are there gaps where design can help in the mental health system? Where are there the most urgent needs?
- How to provide healing in a system: If I’m exploring where to focus, what would the goal be? Likely healing – so is it possible to use design to create healing – and does that operate at an individual level or collectively? Could we ‘heal’ people who’ve experienced injustice at the hands of mistreatment (and misdiagnosis) in the mainstream medical system?
- What type of design to provide healing: If we could create objects that heal, and are they use in private alone, and should I be working at an urban scale for public health or more intimate scale of products? Should I be focused on communications design, industrial design, user experience design (primarily for digital), service design – or something more?
From these I went on to craft interview questions to my specific targeted audiences (i.e. consumers vs. researchers) to explore possible responses to these. I kept a longer list of questions as I explored stigma, mental health treatment (and healthcare) and the role of design as a tool of healing. My questions included the following:
- Gaps: What are the greatest gaps in our understanding of stigma and treatment of it? From a literature scan, I’m reading that a lot of research has occurred, but not necessarily around specific communities or diseases (i.e little research about bipolar disorder and self-stigma, for example).
- Effectiveness: How do we measure the effectiveness of anti-stigma efforts – is it nuanced enough? Can design interventions make a lasting difference on a personal level to change stigma? Must they be a targeted approach to a targeted audience to do so? How do we measure impact of that change for self-stigma? Is there an issue with different standards for measuring effectiveness for design and for healthcare – i.e. a design intervention that creates empathy versus the need for a randomized trials in medicine?
- Self-stigma: If we know public education campaigns, protest and personal contact are the methods to address public stigma, what is being done to address self stigma? Is this best treated via therapy, or are there other opportunities?
Treatment of mental illness and the medical model
- Materials and systems: What support materials are given to address self-stigma to someone diagnosed with a mental illness? Is this seen as something that is ‘dealt with in therapy’? How often does it come up in therapy? Is there a gap in how we ‘onboard’ people for treating mental illness that focuses strictly on medical model (reduction of symptoms of illness) without addressing the social model of disease (reduction of ‘symptoms’ of illness, or viewing low self-esteem as ‘symptom’ of depression?)
- Peer support: How common are mutual help programs (MHPs) or peer to peer support brought up in treatment as part of addressing stigma? Do physicians tell patients about support groups during diagnosis? What’s the difference between ‘Intentional Peer Support’ and mutual help programs – which is the recognized term for this area? Can we address self stigma through self care without asking people to proactively hunt for stories of support online?
- Multi-modal: Have initiatives been done in a therapeutic context that combine multiple methods to address self-stigma – for example, therapy plus peer to peer support, plus public spaces with ongoing conversation and community hubs? How would we evaluate the success of these kind of methods – can they be ‘combined’ in a treatment plan and measured?
- Negative narratives: Do patients talk about the role of negative portrayals of mental illness and if they have an effect during treatment? Do they talk about influence of positive stories about mental illness (perhaps in asking for help)?
- Positive narratives: What are positive narratives about mental illness? Would they be effective in removing stigma – if so how – through repeated exposure? Would these help both mental health consumers and the general public – do they need to be different to be targeted to the audience to be effective? Where would people go to find positive stories? When would hearing them have the greatest impact – in getting people into treatment? Is there a danger of these all being ‘trapped online’ read and perhaps shared, but not engaged with at the same level?
- Narrative in treatment: When we diagnose a mental illness, why do these positive stories not come out especially as part of treatment? Would the treatment of someone with ADHD differ if they learned how Michael Phelps persevered while having it? Note the movement of Narrative Medicine to change the medical community’s understanding of storytelling in recovery. How do narratives (and the act of storytelling and self-narrativization) help address stigma? Is the act of telling one’s story (writing it down, taking a video and uploading it online) enough value in my proposed service, or do need the story exchange, the act of two people bonding over the same story? What are the stories that are meaningful to capture: Stories of perseverance? Tips? Oral history of a place? What tone do these stories need to be?
- The overuse of narrative: Have we reach story and storytelling fatigue, especially with mental illness and sharing stories? Is it a lite’ version of contact? See Spatial Storytelling as an example trying to address that – integrating stories and spaces.
- Space as a way to heal: What is the role of space in healing communities? Would having a public space help contribute to greater understanding? Can we use placemaking (i.e. citizen created initiatives creating spaces) to create spaces to understand mental illness (via education) and also share our experiences to create more empathetic societies?
- Issue: no public venues for discussions about mental illness – we may have ‘town halls’ during elections, and community board hearings for when new development is proposed, but few venues for public officials, mental health experts, community groups and citizens to discuss the issues. While we have a need to have a ‘public conversation’ about mental health, is having a public venue necessarily where that needs to happen?
- The design of space: Do we create an neutral environment for safety or an immersive, emotional experience (i.e. powerful moments like the Vietnam memorial in Washington, or a powerful museum exhibit)? How does space change our ability to express feelings that are uncomfortable? How ‘soft and gentle’ does a space need to be to to create safety, or is safety built over time, much like trust? Must we be ‘comfortable’ in these spaces to have uncomfortable conversations? Are uncomfortable conversations always going to be uncomfortable? How does that need to design comfort help us legitimize power – when we design comfort in physical spaces, do we get rid of the value of discomfort?
Rather than create solutions to explore and potentially answer each of these topics, my thesis started to ‘narrow down’ in scope when I found my foundation, in this case the theoretical foundations for this work.
Earlier work in research and design within healthcare
I’ve had a chance to do work in healthcare before briefly – including conducting usability testing for a medical device manufacturer’s ‘Smart’ bottle enabled with IoT technology, and consulting for the Public Health Branch within the Ministry of Health in Ontario Canada to help them organize their records and document management systems. I also have been thinking about the role of design in healthcare, including exploring how to make patient care more human for my mother when she was a patient in hospital, a brief case study I published online. Healthcare has both scared me and fascinated me as a topic, and likely will continue to; I’m not sure it ever becomes ‘less scary’ but more familiar, likely.