Creating a safe space for co-design
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The document discusses best practices for co-designing research with individuals with autism and related disabilities, emphasizing the importance of reducing excessive disclosure and ensuring informed consent. It highlights the need for creating a safe environment, facilitating self-expression, and supporting participants throughout the research process. Additionally, it stresses the necessity of accommodating various abilities and promoting collaboration to foster inclusive and meaningful engagement.
Creating a safe space for co-design
- 1. Work collaboratively to reduce exces- sive disclosure. Those with autism and related disabilities often find it challeng- ing to predict outcomes. In a research setting, they may not understand the ways that their contribution to the re- search might be shared. With your par- ticipants, work through specific examples of findings that might be shared and with what kind of audience. Explore how sharing experiences may impact interpersonal relationships. Those who have challenges navigating social situations may not understand boundaries for retelling stories involving others in their life. With your co-design- ers, envision potential consequences that could impact relationships in their lives. Consider how reflection may tap into uncomfortable feelings. While we trust our participants to know themselves and their limits, some may inadvertently disclose details that trigger their anxiety or panic. Be particularly mindful of tone, phrasing and setting with participants who have emotional disorders. Creating a safe space for co-design Lessons from working with adults with developmental disabilities People in underserved segments rarely are the target audience of user research and have little exposure and knowledge of what it means to contribute. EASE INTO SESSION PROVIDE FLEXIBILITY EVOLVE PARTNERSHIPPREPARE FOR RISKSINTRODUCE INQUIRY Make the process accessible. Bring the co-design experience to your participants on their turf and on their schedule. Shape the structure of the research fit their needs—for instance, medical issues and disabilities can make extended activities uncomfortable. Review what informed consent means. Consent is not informed if the research subjects don’t understand the implications. Make sure to explain the right to withdraw consent and provide them the means to access their rights. Keep in mind that informed consent can demonstrate independence and provide an opportunity to feel empowered. Explain the goals of co-design and how feedback fits into the research. Introducing the project and the goal of identifying insight sets the focus and es- tablishes partnership. Even so, the ses- sion may seem like an insurmountable task. Break down the activities so that participation seems manageable and so that it’s clear what details need attention. Take responsibility for the relationship that you have cultivated and support your participants beyond the session. Debrief to support self-reflection. As a structured activity, debriefing can provide an opportunity to reflect on one’s experiences and learn from one another. Many with cognitive disabilities have difficulty self-reflecting in the mo- ment, and practice fosters the skill of self-advocacy. Leave things better than you found them. Draw from experimental psychol- ogy and run a wellness check to ensure that no one leaves negatively impacted because they participated. If things get heavy, lighten the mood by praising contributions or remembering laughs. Continue collaboration through- out the life of the project. Re-invest in those who went out of their com- fort zones to participate. Invite current co-designers to upcoming opportunties. Share learnings with the greater community. Difficulties with expressive language inherently prevents self-advo- cacy by co-designers. Act on their behalf and share your insights. Prepare activities that tap a breadth of skills and can provide accommodations across multiple dimensions. Create exercises that support expres- sion across different modalities. Rec- ognize limitations caused by disabilities that make expressive language difficult in speech or writing. Provide different ways for co-designers to express them- selves including drawing and enactment. Not all methods are for all people. Research methods often require skills in abstract thinking—a barrier to those with certain deficits. Ground research activities in concrete past experiences with directed storytelling or in the physical world using maketools. Public interactions may raise social anxieties. Provide considerations for expressing oneself privately or asyn- chronously. Facilitate openly sharing during activities but also allow for alterna- tives that don’t single anyone out. Exchanges may require elicitation. Participants who have difficulty with social cues may need support with turn-taking, reciprocity and social eti- quette when participating in groups. Be ready to prompt co-designers and coach others participating to be inclusive. Warming up to the space and shar- ing with others. Take time for exercis- es where participants can find a rhythm and build familiarity, since adjusting to change can be difficult. Exercises that double as ice breakers can support those with social disabilities and reduce fear of ridicule and failure. Provide instructions, guidance and examples. Communicate in as many channels as necessary to ensure all co-designers understand the goals and activities of the session. Don’t let the exercises be a memory test simply be- cause steps aren’t listed out. Listening to co-designers can act to affirm their experiences. Since ev- ery response reflects a valid viewpoint, build activities that reinforce this stance. When asking questions, probe on both positive and negative answers so that all participants can get a sense of validation. Recognize everyone in the group. Moderate to ensure that those with diffi- culties initiating can contribute. Don’t let your research be another venue to silence those with communication disabilities. Early on, provide easy activities to build comfort and familiarity; encourage par- ticipation with feedback that recognizes contribution. There is reward in involving participants but also the responsibility to mitigate negative impact on their experiences during and after research. BEN ELGART PresenTense Boston Fellow