In this section: Insights, Hypothesis, Scope, Goals and Design Principles.
‘Thinking through making’ is an unofficial model of Parsons and the TransD department, so I created a series of prototypes to explore how to create a cultural infrastructure to address self-stigma – and these were the steps along the way:
I created insights to narrow down areas for intervention. There’s a lot more in detail here that can be viewed in the presentations, but at a high level, these include:
- Gaps in support around compliance: Personalized recovery plans exist, but knowledge sharing is uneven and recovery is seen as an ‘individual’ activity, reinforcing the dogma that success is tied willpower. There are also issues
with recovery plans not being followed after inpatient treatment in a hospital. Consumers also mentioned using Cognitive Behavior Therapy workbooks, but they were unwieldy and hard to integrate into daily life.
- The complexity of isolation: Many interviewed spoke of isolation, but having a complicated relationship with support groups. The stigma around attending them seemed to reinforce that they were a depressing place to visit – at the same time longing for like-minded people with whom to speak.
- Support tools ‘worked’ – but felt hacked together: Consumers tried mobile apps in times of stress, but felt there was a gap that didn’t address recovery itself.
By creating a ‘cultural infrastructure’ of design interventions, we can address gaps in care and help prevent moments of self-stigma from occurring. It is within this ‘cultural infrastructure’ that we can build multiple approaches to dealing with self-stigma and create the building blocks for that infrastructure to grow. (More on the concept of ‘cultural infrastructures’ shortly).
The scope of this work is in helping mental health consumers in the community outside of an institutionalized setting who have been diagnosed with a mental illness and who experience self-stigma. The objective of this work at a high level is to design an approach to help them but also to explore how different design domains help shape that approach, and how a multi-modal approach that views the combination of items (such as objects) fit as a solution. Because self-stigma is unique to each person, this work explores how to create a service that balances the need for personalization with scalability (the ability to deliver interventions for multiple people efficiently), and understand how an infrastructure could be financed and operationalized. The work seeks to create the infrastructure for future design interventions – the scope is not meant to address all self-stigmas. The interventions may not be applicable to all potential users, but the higher meta objective – to show the possibilities of such work – is also an objective. The main boundary of the project is that it uses a design-led research methodology as opposed to a social science or scientific based methodology that uses evidence-based research as part of medical research. Such standards exist in as part of a pilot (such as in a hospital or medical facility) with specific measurable key performance indicators and a pilot criteria verified by an institutional review board. However, this work can serve as a way to point to possibilities for future research and design– a speculative way to imagine a future world and the steps required to help make it a reality.
Something I also wanted to address was where this intervention lives in a world of both traditional mainstream medicine and more recovery oriented systems of care:
I had a few personal goals going into this work:
- Explore the role of design in addressing stigma around mental illness and create different types of prototypes using different design approaches (service design, product design, etc.) and push myself to not focus strictly on digital
- Explore how to create care using design – what does it mean to create care in auxiliary systems of care?
- Explore how to create an open ‘living system’ which evolves to meet the needs of the target community, and how to incorporate some level of civic engagement
For self-stigma and mental illness, there can be long-range goal of eradicating public stigma; for this thesis, a more tangible goal is to look for interventions on the road towards eliminating public stigma. The goal is also to consider a multi-stakeholder approach – not only to support consumers, but also those in their lives and those without experience to convey the message that stigma is all of our responsibility to address. At a high level, the goal of this work is to replace the negative infrastructure of stigma about mental illness with a positive infrastructure of recovery oriented components to create a culture of participation to disempower stigma.
For individuals with a mental illness, the goals include:
- Reduced self-stigma and increased empowerment: Self-stigma has profound effects for those who experience it. Lower self-esteem, for example, creates real, tangible limitations on the potential of those people living with a mental illness, and can affect their ability to see themselves as having a future outside of their illness. This work aims to create a greater sense of possibilities by using design to promote recovery. This is where the idea of design making resources more visible via materiality comes into play, to make visible resources that fight stigma and embed those interventions in one’s life
- Reduced isolation: Because stigma can create a climate where those with mental illness are afraid to disclose they have it, many feel profound isolation. They are warriors fighting a battle but with no ‘comrades’ on the battlefield or a chain of command to ask for reinforcements in the battle. I seek to reducing isolation through leveraging peer-to-peer support, not to eradicate all loneliness, or create an instant social network – no design solution can replicate or expedite the delicate work involved in creating and maintaining relationships. Nor does it assume that the commonality of mental illness is enough to create meaningful deep relationships. Instead we create possibilities for connection that will reduce isolation and convey that isolation is not the de facto state of mental illness, and connection is possible and beneficial.
For individuals who do not have a mental illness, the goal is to increase understanding and empathy. One may never understand the experiences of mental illness especially when compounded by stigma; design can create conditions by creating an infrastructure that allows for lived experienced expertise to be better integrated into current treatment plans. This can be a way for those people in the support circle around a loved one to help support; for those in the general public, the use of this system and its very presence in our societies may provoke awareness and self-reflection about unconscious biases they may have about mental illness.
For mental health professionals, the goal is to create more understanding of self-stigma and see peer support as a legitimate part of treatment. For stakeholders involved in mental health we can illustrate how a transdisciplinary approach can create new approaches to address self-stigma, raising the visibility transdisciplinary design as integral to the work of healthcare. This work may also raise questions about authority and agency and the limits and difficulties of delivering care at a system level. If this work sheds light on the possibilities of peer support, recovery oriented care and transdisciplinary design approaches working together, then it will help create positive change for all in these systems.
Ultimately this goal explores how to see mental illness as something ‘to treat and erase’ and instead shift towards to mental wellness that sees mental illness as something ‘to live with and thrive with’.
The design principles to guide this work include:
- Humility in all I do: As a designer, I bring a certain experiences that may lead me to ‘solve’ a problem; at the same time, there is empowerment in me stepping away from the need to create a ‘finished’, seamless solution. I hope to help others see possibilities in this work and co-design alongside me
- Create bridges towards recovery: My work is addresses the negativity that can cause self-stigma and works to reframing this as part of recovery oriented systems of care; at the same time, my work cannot exist on its own without that larger context of those recovery oriented systems (and specifically, a recovery plan within it). As such, my work seeks to work alongside treatment plans, not to replace them.
- Advocate for existing resources earlier ‘upstream’: someone new to a system may not be aware of what resources are available, and even someone who is experienced may not be aware of newer resources or improvements to resources. One may not know which resources are most appropriate, even if they have a supportive treatment team. Rather than depending on people to find resources they may not know they need, design can make these resources more visible to encourage their use.
- Encourage openness and personalization: A complex, adaptive system is both stable but also in flux, evolving and in some cases, open and living. Innovations can bring new opportunities to our systems, and the option of personalizing design interventions is an example of openness. Rather than seeking to create a comprehensive ‘one size fits all’ solution, I seek to move away from prescriptiveness and encourage living systems that evolve as our needs evolve.
- Small is beautiful: Inspired by David Weinberger’s concept of ‘Small Pieces Loosely Joined’, my work explores a personal scale for interventions that evoke connections at a person-to-person scale rather than at a systemic level. The temptation when working with vast system(s) involved in care is to create vast solutions in response to the complexities we encounter in our quest to solve or ‘end’ a problem. Instead this work seeks to create interventions that help address self-stigma, which is personal, intimate and individual – in some way the opposite of the systems at play but no less valid as an area of inquiry.
Tying research into design and action using a framework
By the end of my work, I also saw another way to visualize the work I was doing and how to tie the research into prototyping. As I had conducted research, some key areas of exploration began to emerge which shaped areas I wanted to design in – such as recovery oriented systems of care. The challenge is that these seeds existed, but weren’t necessarily being incorporated to work together. The mental model of a design-led ecosystem for an alternative system of healthcare around stigma reduction became this model: