Health Design Research
Autism Spectrum Disorder
YEAR 1:
Connecting Family Needs to ASD Research in BC
Research summary
Using a human-centred approach to design research we built knowledge and understanding through bringing stakeholders into the design process. We led a series of co-creation workshops in Vancouver, Prince George and Courtenay/Comox with parents of children on the ASD spectrum as well as adults on the spectrum.
Research Questions
- What are the needs of individuals with ASD and their families?
- How do parents view research as connecting to these needs?
- What new areas of research might parents propose?
Co-creation activities
ICEBREAKER
At the beginning of each session, we introduced ourselves and this project, and we showed participants a visualization of current autism research in BC to give them a sense of the work currently being done. This acted as an icebreaker, allowing participants an opportunity to voice opinions and easily establish common ground with other participants.
ACTIVITY 1 – ROAD MAP
For our first activity, we laid out an abstracted ‘roadmap’, and supplied the participants with markers and stickers, in order for them to ‘map out’ their experiences from diagnosis through education, to adolescence and transitioning to adulthood. Combining this with stop signs, yield signs, and comments, the participants were then able to give us a visualization of their experience, and an understanding of where they felt frustration and/or confusion. The duration of this activity was about 15-30 minutes, or until the participants felt they were finished. This activity was designed to get the parents talking to each other, sharing and comparing experiences and getting oriented towards communicating their overall needs. Insights were captured in two ways: note-taking of the conversations, and notes made by participants on the maps.
ACTIVITY 2 - BLOCKS
In the second activity, participants were given two sets of wooden blocks. The first set of blocks represented their own needs and the second set represented areas of research. Parents were asked to title the blocks from a set of pre-made labels, or to create their own from a set of blank labels. They were then asked to arrange the blocks and use string to illustrate connections between their needs and areas of research. The intent behind the exercise was to gain a rich understanding of parents’/caregivers’needs, their current awareness and emphasis on research, and where they would make connections. Our intention was to extrapolate a theoretical structure or framework from the participants’ physical representation, in order to show the relationship between needs and research. This activity provided a richly complex understanding of the relationship of research areas to needs, from a parent’s/caregiver’s perspective.
DATA ANALYSIS
To analyze the co-creation results, we used a process called affinity diagramming to focus findings through a process of categorization. First, each “bit” of information from the sessions was re-entered on a post-it note. These notes were then clustered based on their affinity, naturally grouping into needs and research based themes. The team then began the process of interpreting notes and considering the underlying significance of each. Out of this work, a story emerged about people, their daily routines, and the nature of their problems or concerns.
Research insights
For most of the Health Design Lab team members, this was our first encounter with parents of children on the spectrum and we were all struck by the radical life changes that families have made to accommodate their children’s needs. They become, by necessity, advocates for their children, and often mentioned feeling alone and isolated.
They understand the general need for research, but it sometimes feels removed to them, not connected to their needs or their children specifically. Parents want research. But they want it applied to tools, treatments, materials, and support mechanisms that can directly benefit their children. They are highly supportive of any such initiative that might connect research more directly to their needs.
Health Design Lab
Project Lead
Jonathan Aitken, Director
Research Design and Analysis
Deborah Shackleton, Dean, Faculty of Design and Dynamic Media
Project Coordinator
Jacqueline Kler, Operations Coordinator
Research Assistants
Juliana Forero
Natalia Franca
Rachelle Lortie
Lauren Low
Manda Roy
Dina Smallman