Health Design Research
AUTISM SPECTRUM DISORDER
YEAR 2
Bringing Researchers and Families Together in the Autism Spectrum Disorders Community
Research summary
The goal for our 2016/2017 collaboration with PAFN was to gain a better understanding of how researchers and families currently communicate, and to foster ideas for improving future communication. Through our collaboration in 2015/2016 we saw a keen interest from families and researchers to connect with one another through participatory workshops.
This project utilized design methodologies, which enabled a multidisciplinary approach for creating and developing knowledge and empathy between the designers, researchers and families engaged in this project. We used generative methods, including co-creation to enable participants to express their thoughts, feelings and needs, through verbal and visual means. We designed artifacts that act as triggers for conversation to help foster dialogue and draw out latent and tacit knowledge from participants.
Research Questions
- How are families currently accessing and navigating information and research?
And what are their challenges? - How are researchers currently disseminating information and research?
And what are their challenges? - How do families and researchers envision the future state of communication?
Project timeline
Research activities
INTERACTIVE INSTALLATION
We conceptualized and designed a public interactive installation for the official launch of the new PAFN facility. This temporary installation was set-up on a wall within the new facility and sought to engage a variety of visitors, including families and researchers, to ‘drop-in’ and respond to two key questions:
What is your vision for ASDs in British Columbia?
Where do you access ASDs research?
The purpose of the installation was to create a highly visual display to showcase the interest of PAFN in connecting families to research, and to promote and recruit participants for the co-creation workshops.
CO-CREATION WORKSHOPS
Looking at the information gathered through the interactive installation and past workshops, we developed tools and activities for facilitating co-creation workshops with families and researchers.
The intent of these workshops was two-fold. The workshops were set-up to allow researchers and families to connect directly and engage in dialogue with one another as a learning opportunity for both groups. Additionally, they were used as a research strategy to gather qualitative information about the current state of communication between researchers and families, and to gather ideas for new communication strategies and approaches.
Co-Creation activities
1. INTRODUCTION / WARM UP
To begin the workshops, a collection of objects was placed on a table and as the participants walked into the room they were asked to pick an object that stood out to them, or represented aspects of their personality. While standing in a group circle each participant introduced themselves by saying their name, what brought them to the workshop and why they chose that particular object. The goal of this activity was to create an inviting environment for participants to get to know each other before moving on to the next stages of the workshop.
3. INTERVIEW
Following the string mapping activity we began the next activity which focused on gathering ideas for ways to improve communication between researchers and family members in the future.
Participants were asked to pair up (ideally one researcher to one family member) and interview each other. Each participant was given a set of interview questions depending upon whether they identified as a researcher or family member.
We asked them to record their partners answers during the interview as they listened. Researcher answers were recorded on blue post-it notes and family answers were recorded on orange post-it notes. This activity was intended to help researchers and family members to connect and give them an opportunity to have an intimate conversation about what they would like to see in the future.
2. STRING MAPPING
The first half of the workshop focused on understanding the current state of communication between researchers and family members and probed for how families access research and how researchers disseminate it. This conversation was facilitated by a string mapping activity. To begin, participants were separated into two smaller groups in order to create a non-intimidating discussion environment. Each group had its own table with a peg board and an HDL facilitator.
Family members were asked to write down some of the questions that they are currently trying to find answers to, and researchers were asked to write down the areas of research that they are currently engaged with.
Those notes acted as starting points for participants to then articulate and visualize their journey of accessing/ disseminating information.
4. GROUP DISCUSSION
Following the interview activity, participants were asked to add their notes to a vision wall and discuss the main ideas and insights they had generated with the larger group.
This was an opportunity to listen and share each other’s ideas and brainstorm together. This activity was also effective as a wrap up for the workshop.
Data analysis
After facilitating the four workshops the HDL team took the materials back to the studio and began to analyze the data collected. Half of the team focused on the data surrounding the current state of communication, while the other half of the team focused on synthesizing the ideas proposed for future communication strategies.
We used a process of affinity diagramming, common in design research, to externalize and meaningfully cluster observations and insights from the research (Martin & Hanington, 2012). This method uses a process of categorization to focus findings. Notes that shared a similar intent, problem, or issue were grouped together. The team then began the process of interpreting notes and considering the underlying significance of each. Out of this work, key themes emerged about the types of sources that are most accessible to families and current barriers that exist to accessing and disseminating research.
Research Insights
Through an analysis of the data gathered in our workshops, it was found that although researchers and families currently have some opportunities to connect, there are several barriers that prevent meaningful exchanges and valuable learning opportunities are often lost.
Accessing and disseminating information requires clear lines of communication, allowing for cohesion and understanding. Access to credible information is imperative for parents as they journey through the ASDs community. Both families and researchers indicated that that it can be very difficult to find relevant information that is both credible and accessible.
As we unpacked the conversations captured through the co-creation workshops we identified key areas that heavily impact accessibility and credibility, including: language, money, time, location, trust and systemic constraints. These themes intersect to create a complex landscape that often creates barriers in knowledge exchange between researchers and families.
Health Design Lab
Project Lead
Caylee Raber - Director
Project Support
Deborah Shackleton - Dean, Faculty of Design and Dynamic Media
Project Coordination
Jacqueline Kler - Operations Coordinator
Research Assistants
Ateret Buchman
Natalia Franca
Stacie Schatz
Zora Trocm