In collaboration with Junqi Wang and Yuchen Fu
LIVING WITH HEAD AND NECK CANCER
The class was introduced to the life of people living with HNC through a group expert interview with Kimberly Flowers, a HNC veteran of 6 years, and Gabriela Constantinescu, a speech language pathologist. Using this introduction we needed to quickly narrow our groups focus given the project’s 3 week timeline. We used decision matrices developed by our course instructor, Ben King, to help us choose a direction as a team.
I want to acknowledge there were many opportunities Kim and Gabriela shared in need of improved design. Off the bat, my team and I were interested in investigating topics of emotional identity, doctor-patient discourse, and eating with HNC. To help us decide, we used decision matrices and scored each topic on:
Research: the quality and quantity of research ahead.
Feasibility: our ability to develop a believable design concept within the project scope.
Communication: how well we can represent our insights and designs visually and verbally.
Innovation: the potential to address unmet needs and develop original concepts.
Plotting points closer or further away from the center helps to visualize the amount of opportunity and work ahead in each topic. This helped to be realistic while ambitious in the short project timeline. My team and I chose to focus on the barriers HNC veterans face around the activity of eating.
A NEW RELATIONSHIP WITH EATING
Here are the insights from our introduction interview that influenced our decision to pursue the topic of eating with HNC. Let's start with Kim’s experience as a 6 year HNC veteran.
KIMBERLY FLOWERS HNC veteran, President of the Head and Neck Cancer Support Society (HNCSS)
Here are insights from Gabriela’s experience as a speech language pathologist working with HNC patients through swallowing and speech rehabilitation.
GABRIELA CONSTANTINESCU Speech Language Pathologist (SLP)
UNDERSTANDING CONTEXT
After our initial interview with Kim and Gabi, we noticed there was a lot influencing the experience of eating for people living with HNC. To deepen our understanding we set out in search of a more holistic and contextual picture. This is represented through the following questions and findings...
MEGA MIND MAP I developed this mind-map that visually represents the connections between these 7 domains with insights from the Watson and et al. (2018) study and our interviews. I used this to further narrow our focus as a team. We crossed off areas we didn’t think were viable within the scope of the project, and circled design opportunities in yellow.
FINDING THEMES
We collected a lot of information on the various challenges facing people with HNC while eating, now it was time to make sense of it. To visualize all our research findings we gathered our key insights into themes. Through a few drafts we worked to find connections between these themes to help define a focused direction. Our final draft is pictured below.
NORMAL TO INCLUSIVE We noticed that many of the challenges people were sharing are connected to a longing for normalcy. We began to ideate different ways you can make eating in public feel normal. Striving for inclusivity became an important design objective through this exercise.
VISUALIZING DINING
Our next move was to build a picture of dining out with HNC, so we created a ‘Journey Map’ of the decisions some with with HNC makes in this scenario. This helped us to better understand where we could intervene in the experience of going out to a restaurant. We also dicussed our map in an interview with HNC veterans Ken and Debbie.
ITERATING FOCUS
A NEW DINING EXPERIENCE
(click story to enlarge)
OUTCOMES
We conceptualized a non-profit called Eat Different that provides restaurants with guidelines to follow in order to make their service more inclusive for people with difficulty swallowing. This lets people with altered eating needs know that they have nutritious, beautiful, and safe food options when they go out to eat at an Eat Different restaurant.
A RESTAURANT'S PERSPECTIVE
Instead of designing the Eat Different initiative for all restaurants, we focused on one. We chose Earl's as a case study because it's a far reaching and established franchise in Edmonton and North America. We reached out to Erin Howard, the General Manager of the Earl's on campus and pitched Eat Different to get a restaurant's perspective. Erin responded with both a yes and a no to adopting the program. She saw the value in communicating a level of standardization to people with swallowing difficulties, but Erin prided her restaurant on how accommodating they already are, and she felt as though many people know this about Earl's.
DUAL BUSINESS MODEL CANVAS (BMC) To develop Eat Different we combined our Earls BMC with our Eat Different BMC (above). Here we were looking for sections where Eat Different could add value to Earl’s current model, while noting where each models values aligned. We were also looking for resources Earls already possesses that would make the implementation of Eat Different considerably more feasible. For instance, Earl’s has a test kitchen in Vancouver where they experiment with new recipes for their menu.
STAKEHOLDER FEEDBACK
At the end of the 3 weeks we presented our research, creative methods, and concept to the class. We were lucky enough to present to a room nearly full of our stakeholders, including HNC veterans, speech language pathologists (SLP), resident doctors, designers, etc. The response was overwhelmingly positive and created space for our audience to share personal experiences with the issues of eating with HNC. This lead to a larger discussion on how Eat Different is a design of advocation for those living with swallowing difficulties.
Additionally, Gabriela Constantinescu, the SLP we consulted with during the early portions of the project, was inspired by our idea. She told us she knew someone who could be interested in implementing Eat Different.
TESTING AND IMPLEMENTATION
Gabriela set up an opportunity for me to pitch Eat Different to Dr. Jana Rieger, her colleague, and Amal, a local restaurant manager of Amber Cafe & Restaurant. The pitch went very well, and Amber Cafe & Restaurant adopted the program shortly after. The implementation involved a 'Menu Tasting Night' where we invited HNC veterans with dysphagia to taste and give feedback on menu items modified by the chef. Here is where the name shifted from Eat Different to Eat Easy, as per a suggestion from a dining guest on the test night.
EAT EASY MENU ITEMS Amber Cafe & Restaurant added swallowing friendly menu items (a few of which are pictured above as the front dishes) as a part of the Eat Easy initiative. From left to right the chef prepared crème brûlée, mac and cheese, and a root vegetable salad.
HEALTH RESEARCH ASSISTANT
In this position I extended the research we had already gathered in order to validate the concept from a restaurants perspective. This involved conducting interviews with chefs, restaurant managers and owners, and developing strategies to gain restaurant interest. I synthesized the insights to form the restaurant criteria for becoming an Eat Easy member. I also spent time building awareness of Eat Easy with presentations at hospitals and with dieticians. Plus, I began developing the branding of Eat Easy, which was a new undertaking for me.
EAT EASY POSTCARD I handed out these postcards during a presentation I gave to Edmonton’s Glenrose Hospital Feeding and Swallowing Team.
EAT EASY CRITERIA I continued to develop stakeholder informed criteria to evaluate prospective and current members of the initiative.
REFLECTION
This project was incredibly challenging. Not only was the content emotionally impactful, but the design space and process was quite difficult to navigate in the short 3 weeks we were given. However, we managed and came out with a meaningful and viable design (phew)! Looking back I attribute much of the success in project navigation to seeking out collaboration and insight outside of our team. This really helped to understand what we were communicating well, and what needed more work. I also learnt a lot about leading a team through complex design challenges. Guiding my teammates through design exercises such as 'Finding Themes' or 'Journey Mapping' helped me learn how to communicate the design process to people who aren't as familiar with it. Overall, I'm incredibly proud of what we achieved in the short time and excited that I've been given the opportunity to continue our work.*
*Unfortunately, with the restaurant sector repositioning from the COVID-19 pandemic, we have paused the work of Eat Easy until further notice, but are keeping the idea warm.
ACKNOWLEDGEMENTS
This project was completed during a design course at the University of Alberta in 2019. I would like to extend a thank you to the interviewees, course instructor (Ben King), Gabriela, Dr. Rieger, and Amber Cafe & Restaurant for beginning steps towards implementation, and my colleagues who volunteered their time to share their experiences, expertise, and insights. These not only helped to shape the design outcome, but also contribute to extended conversations in hopes of increasing awareness and resources to support people living with dysphagia.
REFERENCES
A spoon is a spoon until you have head and neck cancer: A design case study. (2018, October 25). Retrieved from https://rehabinkmag.com/2018/05/14/a-spoon-is-a-spoon-until-you-have- head-and-neck-cancer-a-design-case-study/
Bresge, A. (2018, April 12). Restaurant introduces gender-neutral greetings for inclusive dining experience. Retrieved from https://www.ctvnews.ca/lifestyle/restaurant-introduces-gender- neutral-greetings-for-inclusive-dining-experience-1.3882168
Burges Watson and colleagues, Altered eating: a definition and framework for assessment and intervention, (2018).
Diversity & Inclusion in the Workplace. (2018, November 12). Retrieved from https://www.menumag.ca/2018/11/05/diversity-inclusion-in-the-workplace/
Earls Kitchen and Bar. Retrieved from: https://earls.ca
Ganzer, H., Rothpletz-Puglia, P., Byham-Gray, L., Murphy, B. A., & Touger-Decker, R. (2015, April 08). The eating experience in long-term survivors of head and neck cancer: A mixed-methods study. Retrieved from https://link.springer.com/article/10.1007/s00520-015-2730-9
IDDSI food descritor guideline: https://iddsi.org/Documents/IDDSIFramework-CompleteFramework.pdf
Park, M. (2010, February 19). Oral cancer’s toll cruel. Retrieved from http://www.cnn.com/2010/HEALTH/02/19/george.karl.throat.cancer/index.html
Watson, D., S. Lewis, V. Bryant, J. Patterson, C. Kelly, R. Edwards-Stuart, . . . V. Deary. (2018, March 27). Altered eating: A definition and framework for assessment and intervention. Retrieved from https://bmcnutr.biomedcentral.com/articles/10.1186/s40795-018-0221-3
