jhea espares ︎︎︎







Type 1 Diabetes & Aging

UCSD Design Lab
Diabetes Design Initiative


spring quarter project
March 2021 – 10 weeks








Setting the Stage for Future Research on
Type 1 Diabetes & Aging



In 10 weeks, our team of student designers and researchers, alongside our diabetes community mentors, explore the question:

How might we build the foundations for much needed research on how Type 1 Diabetes affects quality of life and the capacity to prepare for aging?




roles
Researcher
Workshop Facilitator


tools
Figma
Miro
Zoom


team
Jodie Li
Yun (Denise) Tang


mentors

Heidi Rataj
Joanne Milo
Raveen Johal
Cassidy Robinson












I. Context

With ongoing advancements of healthcare technologies and research, people with diabetes are reclaiming more and more control over their management of their health. In fact, people with Type 1 Diabetes are living longer than ever before.

While this has significantly improved the quality of life for many people, this has also posed new challenges for the diabetes community. Planning for aging, or simply experiencing aging, have presented many obstacles for people who are aging with Type 1 Diabetes.

During this project quarter cycle, our team of design and research assistants implemented user research methodologies into our needfinding research to explore the various obstacles that the T1D community faces as they age. From family dynamics to institutional barriers, we gather and synthesize our findings to set the stage for much needed research within this problem space.






How might we explore the complexities of aging with Type 1 Diabetes? How does this condition affect how people approach and feel about planning for their own future?








II. Research Methods

With weekly guidance from senior design and research mentors, our team conducted a total of 14 remote interviews with 14 participants, including Paul Madden, M.Ed., former Director of Advocacy of the Joslin Diabetes Center.










A.
Limits in Research

︎ 6.8% of San Diegans are diagnosed with diabetes. Not every one of them has access to institutions such as UC San Diego. It is critical to understand how lack of community resources and connections affect the way people with Type 1 Diabetes are able to plan for aging.


︎ Understanding health disparities in diabetes* will provide us a much more inclusive and holistic view of how socioeconomic and racial factors affect the way people are able to plan for aging and the obstacles they face due to institutional barriers.


*Source: CDC - Addressing Health Disparities in Diabetes





B. Research Processes

Over 10 weeks of exploratory research, our team set out three formative research questions:



How do our respective participants experience aging with Type 1 Diabetes and how do their individual experiences affect their capacities to plan for aging?







︎







Process: Explore the different experiences of our participants who are aging with Type 1 Diabetes and apply our synthesis onto existing literature.


How does planning for the future affect the loved ones of people aging with Type 1 Diabetes?

︎

Process: Facilitate a virtual community workshop with people with Type 1 Diabetes and their respective loved ones.



What institutional barriers do people with Type 1 diabetes have to face when trying to claim control over their care and management of diabetes?

︎

Process: Explore how our participants define the healthcare system based on their individual experiences. Propose opportunity spaces that can be further explored through future research that aim to design tangible solutions for improving patient-healthcare interaction.








III. Research Process 1

How do our participants experience aging with Type 1 Diabetes, and how do their respective experiences affect their capacity to plan for aging?







Process: Explore the different experiences of our participants who are aging with Type 1 Diabetes and apply our synthesis onto existing literature.



To explore this research question, our team prioritized understanding our group of participants, each of them from varying experiences and backgrounds.

Based on our 14 participant interviews, our team synthesized our insights through the lens of the interdisciplinary model:


The Biopsychosocial Model*




*Borrell-Carrió, Francesc et al. “The biopsychosocial model 25 years later: principles, practice, and scientific inquiry.” Annals of family medicine vol. 2,6 (2004): 576-82. doi:10.1370/afm.245










As we explored the biological aspects of diabetes and aging, we understood more clearly the way this condition forces many people with diabetes (PWDs) to take full initiative over their bodies in order to regain control and power of their body’s daily changes.




Our interviews showed patterns of emphasis in individualized and personalized health management. Not everyone experiences type 1 diabetes and aging the same way and our research lens must be flexible and understanding of the various differences of people’s physiologies and validate their varying needs of care.






Many of our participants shared their experiences dealing with diabetes alongside other coexisting conditions that give rise to unique forms of care and treatments that often require a wide range of technological tools, medication, hospital care, and forms of daily management.



Diabetes also introduces a new level of unpredictability, especially in the biological sense. This unpredictability pushes many PWDs to constantly wrestle and fight for their bodies’ control panel, pushing them to constantly be hyper-aware and hyperattentive of the smallest changes in their physiology on a daily basis.



The biological also becomes more and more integrated outwards into the technological realm, where PWDs and their sense of hyperawareness becomes even more heightened by their dependence on real-time biological data. Because of this rather exciting, newer outlook and augmented sense of control and clarity, many of our participants expressed their deep concern of losing this sense of control, either by cause of biological or cognitive decline.









Many of the biological functions that affect people with Type 1 Diabetes also take a great toll on the psyche.






Daily management of diabetes was consistently described as “frustrating” and “a constant process”. Many of our participants liked to call themselves “control freaks” and “extremely independent”.

We have to be cautious about perceiving these descriptors through a stereotypical lens. The need for “control” doesn’t arise without reason. It is a response to the loss of control that diabetes imposes on people’s lives. So much of their psychological well-being rests on their grasp of their own bodies’ fluctuating changes, a rather difficult task to take on on a daily basis.




Leading us to the second point where the cognitive burden people have had to take on has become more and more alleviated by the presence of new technology, which many have described as a source of “relief” and excitement for the future.



One of our youngest participants, a 30 year old woman, described her relationship with type 1 diabetes as an interaction with the “dual brain.” Alongside her own brain, she has programmed and trained, since her time of adolescence, a second “dual brain” to manage her diabetes, and she worries that overtime that she may lose the sense of control that this second brain provides and that this second brain may cease to perform overtime. Many of our other participants shared the same sentiment, the worry of losing their cognitive abilities as they age, one of the most prominent parts about their fear of aging.

The idea of handing down their “dual brain” to an external source, such as a caretaker or even a physician, presents worry that these external sources, despite their textbook knowledge and empathy, will not be able to properly replicate the personalized system that they’ve trained themselves and their “dual brain” to perform for years.



Despite fear, many also shared their optimism and positive attitudes as factors that keep them going. Many are excited about retirement, caring for grandchildren, and traveling the world. They simply want to be healthy and present for these exciting milestones and life experiences while maintaining their resilience and a positive attitude towards life.









Social factors were commonly expressed as strong, positive support systems for our participants, as well as key determinants of the obstacles that arise when planning for aging with diabetes.


Based on our interviews, finding a support system or a community that is within physical proximity provides PWDs with reliable support and instant access, especially in times of emergencies. Family dynamics also play a critical role in shaping the social support system as PWDs age.



One of our participants shared their optimism, sharing that aging for her is easy. She has a strong family support system from her sisters who also have Type 1 and a support group outside of her own family. While this paints the ideal picture, we should acknowledge that not every person with T1D has these modes of support. We find it valuable to explore different family dynamics and their effect on the quality of life for people aging with T1D. In addition, it is also valuable to explore how current family dynamics affect people’s capacities to ask for and receive help and how often times, these relationships are substituted with professional, paid caretakers who step in and become that mode of short or long-term support.
















So far, we have primarily focused on the obstacles that many face with aging. Similarily, this begs an equally important question and opportunity space:

What factors make aging relatively easier?



In our new world of tech, the world has become smaller and smaller, as more and more of the diabetes community find ground in virtual online spaces, especially in the recent context of COVID-19. Despite tech’s varying constraints with physical interaction, these virtual networks still have shown the power of allocating and sharing resources, information, connections, and advocacy.



Because of these stronger, interwoven connections, creating pre-planned support systems have become easier to coordinate, especially in contexts of emergencies and or hospital admission. However, the process of finding the right advocates and support is a process in and of itself. Building trust, relationships, and finding advocates doesn’t happen overnight. Support systems also age, so dealing with loss of connections with HCPs, advocates, and loved ones is a reality that many people have had to cope with.



Lastly, the social community often tries to take the place of holes where health institutions fall short or are simply incompatible with the need at hand. Many of the participants we interviewed expressed how institutions have become more and more inaccessible, alienating the masses and underwhelming their expectations. Going back to our quote above, our participant states that she lives in Newport Beach, which has been claimed to be one of the wealthiest cities in Southern California.

So how might we frame future studies so that it includes people who may not have privileged financial access to institutions and quality care? How do economic barriers affect the social networks that people are able to create for themselves?






IV. Exploring Personas
















How might the healthcare system best support Sam in maintaining and improving his diabetes management that meets his own high expectations?

What steps might Sam take to maintain his level of autonomy as he ages?





For people like Avery, technology is best used minimally. Avery is highly satisfied with her daily management tools and has successfully adopted her own process of managing using the least amount of complex tools. She has always wanted to learn more but she finds it difficult to access new technologies.

It is valuable to explore her capacity for learning new technologies, despite designer efforts in making new tools as user friendly as possible. Introducing change for people who have adopted long term habits and processes may require more than just user friendly interfaces and systems.


How might people like Avery maintain their sense of control and autonomy as they age?

How might this shape the way Avery plans for her future and the way she builds new relationships with future healthcare providers and diabetes adovcates?







V. Research Process 2

How does planning for the future affect the loved ones of people aging with Type 1 Diabetes?

Process: Facilitate a virtual community workshop with people with Type 1 Diabetes and their respective loved ones.



Through our preliminary interview stages, our team learned that planning for aging affects loved ones as much as it does for people with diabetes.

We found it valuable to understand the perspectives of loved ones. In order to further explore this space, we organized and facilitated a remote community workshop.


Our Workshop Goal:


To bring in the community into our research space to better understand the patterns of specific needs of people with diabetes and where their needs may intersect with their loved ones’ needs and the needs of their community as a whole.





With the help of our mentor/project manager, Raveen, I led facilitation of our workshop breakout room with our Loved Ones group.







A. Perspective of People With Diabetes




In our effort to understand the linear framework of aging with type 1 diabetes, our team discovered that the linear framework of time that we’re so accustomed to in our western society does not fully capture the longitudinal process of aging with Type 1 Diabetes. A linear framework fails to acknowledge how life milestones often aren’t dictated by time but by unpredictable life changes that arise arise due to lack of resources and financial support or unforseen changes in health and support systems.



The aging population of T1Ds is extremely diverse. This diversity should be acknowledged when making general conclusions about this topic. We must consider the various factors (such as socioeconomic, cultural, social, etc.) that greatly affect quality of life and the motivation factors that lead them to take on a new milestone or major life change.



Planning for the future and even simply talking or thinking about it can be mentally and emotionally difficult for PWDs. 
How might we support PWDs so that planning for their future is a process that less burdensome and draining?






B. Perspective of Loved Ones




As facilitator and organizer of the Loved Ones breakout room activity, I strived to better understand the impact that diabetes has on loved ones of People With Diabetes.

Basing off of the Mad Libs Activity framework, I presented fill-in-the-blank statements one by one to our participants, assuring them to engage in honest self-reflection and to be transparent of their own technical and emotional capacities.







Afterwards, I opened up the space for a guided group discussion, allowing our participants to openly share their experiences with each other. Even with time constraints, our group discussion flowed smoothly, and it was clear that our loved ones, despite feeling vulnerable in a new space, felt open and eager to express their thoughts and experiences with other loved ones.





Based on this activity and our group discussion, our team synthesized our findings into three main points:



Loved ones have had to train themselves or have naturally learned overtime to anticipate the needs of their partner. During our discussion, our participants all shared their common experiences with seeing the early physical signs of their loved ones experiencing sudden physiological changes such as symptoms of hypoglycemia. Knowing these signs has helped them feel and become more reliable, attentive loved ones especially in times when they are needed the most.



       

Our participants felt affirmed by sharing their thoughts and feelings with other loved ones. They share common frustrations, allowing them to feel more comfortable with being transparent and honest with themselves and with their community.

Despite their enthusiasm and willingness to help, loved ones are not provided enough open community spaces and opportunities in research settings to honestly express their needs and goals for themselves and their loved ones. There’s plenty of research opportunity to build upon this shortcoming.




Despite difficulties that arise in communicating their needs and concerns, our group of loved ones still expressed their willingness to be engaged and involved in the conversation. They acknowledge their strengths and aspects they want to improve on. They want to help and they have solutions!








VI. Research Process 3

What institutional barriers do people with Type 1 diabetes have to face when trying to claim control over their care and management of diabetes?

Process: Explore how our participants define the healthcare system within their lives. Propose opportunity spaces that can be further explored through future research that can focus more on designing tangible solutions based on our research.



Through our interviews, many of our participants shared their varying experiences with the healthcare system.



A. Varying Expectations & Different Realities





B. Feeling invalidated by HCPs





C. Finding and building trust with HCPs






D. Expert Interview Insights



With a goal to better understand the imbalance of power between patients and their health care providers, our team interviewed Paul Madden, M.Ed., former Director of Advocacy of the Joslin Diabetes Center.

Paul Madden, whose mother has Type 1 Diabetes, shared with us a story of how he had to advocate for his mother by navigating through the power dynamics of hospital protocols. He recalled:



Introducing his expertise and title helped establish his credibility as an advocate for his mother. Unfortunately, this scenario does not represent the commonfolk, in that not everyone has the power to assert their impressive titles in order to simply be validated by HCPs. This reveals just how difficult it is to receive quality care without the power and proximity to a healthcare institution and in general. And despite his proximity, Paul Madden still had to go through his own hurdles to advocate effectively for his mother.














Paul Madden, M.Ed., who has Type 1 Diabetes himself, is a prominant diabetes advocate and leader of various diabetes organizations and projects, such as Project HOPE, J&J Diabetes Institute, and American Diabetes Association. He also served as Director of Nutrition Advocacy, Education, and Empowerment for PepsiCo. Aside from his professional experience, Madden is passionate about continuing community advocacy for the betterment of the diabetes community.





Our team synthesized our insights into this visual model to illustrate the foundations that serve to support people with diabetes.








At the very top of the pyramid, we begin with the individual. As we continue our way down the pyramid, the points of care become broader and broader.

Likewise, when we perceive this model from a bird’s eye view, we see that the individual is at the very center of all points of care.


The healthcare system, despite being the base of this model, has proven itself to be shaky and inconsistent.



How might we increase the authority and power of the average PWD and their diabetes advocates?


How might we rebuild and strengthen the cracks between the individual/the diabetes community at large and the institutions and experts they encounter?






VII.
Potential Solutions

As we concluded our research project, our team envisioned various opportunity spaces that would provide further value to the continuation of this research problem.






On June 3, 2021, our team virtually presented our research findings to a group of invested stakeholders composed of seasoned researchers, practicing MDs, endocrinologists, and geriatricians from institutions such as UC San Diego, University of Southern California (USC), UC San Francisco (UCSF), and University of Washington (UW). We hoped to share our insights with practicing and invested professionals to help set the foundations for the next stage of our design and research cycle.















Hello, you have reached the end of this case study. Congrats on being a great reader! And thank you for being patient with my words. I hope you’ve learned some new things. This research project has continued onto our summer and fall 2021 quarter cycles. With these findings and ongoing research, our team is in the works of exploring potential tools for people with diabetes who want to plan for their future. If you have any questions about our work, let’s connect. Thank you!