Solutions for Collaborative Caregiving
A Participatory Design Project with Family Caregivers
Team: Ting-Hsuan Wang, Matthew Alexander, Meagan Elise Griffith
Note: This was a participatory design project done for the INST704 Inclusive design course, as part of the HCIM Masters program at the University of Maryland College Park.
For our inclusive design course project, our team of 3 graduate students was tasked with locating a participant who was underrepresented and/or under-resourced in some way and working with them to identify a problem area or areas to design solutions around through a participatory co-design process. For our project, we were able to identify a few potential participants to work with and ultimately landed on working with two sisters who share the caretaker role for their elderly mother who has Alzheimers and dementia. The first sister lives in Virginia, has the mother living with her, and is the main caretaker. The second sister lives in Maryland and comes over to help with caretaker duties whenever she’s able to.
Caretakers in general face many challenges, but family members sharing the responsibility of caretaker can face an additional set of unique challenges. Our motivation for choosing our participants came in a few different forms. First, we felt that this would be a really unique opportunity for us as designers to step out of our comfort zone and work/design in a space we had never been able to before. Second, we felt as though this space would be challenging yet rewarding to see all the way through and continually learn from each other and our participants throughout the process. Lastly, we believed that based on the assumed potential problems our participants faced, there was a good chance that we could actually design and implement a real solution for them. Another thing to note is that our participants, the two sisters, were well known by one of our group members, which meant that we could work with them more closely and continue to offer occasional support and assistance beyond the project period. There were some important steps we needed to take first in order to get to a solution.
Participatory Design Process
Problem Understanding Interview
We started our participatory design by conducting a one-hour problem understanding interview remotely via Zoom. The interview guide included four sections:
- Warm-up (5 minutes)
- Daily activities exploration (15 minutes)
- Caregiver behavior exploration (20 minutes)
- Design brainstorming (20 minutes)
At the beginning of the session, we introduced the purpose of the interview and explained the participatory design process. We also encouraged our participants to ask questions and/or share their valuable thoughts with us. During the warm-up conversations, we built connections with our participants in an effort to break down the barriers that could possibly exist between designers and participants.
We led the conversation with the “Daily activities exploration” questions to understand participants’ daily activities, experiences, and where they see caregiving challenges coming up. Then, we dug deeper into their challenges and concerns through the “Caregiver behavior exploration” section. Our conversations with the participants during the “Caregiver behavior exploration” section provided us with an in-depth understanding of their roles as caregivers, the difficulties they were facing, and the tools and technology they have been using throughout their caregiving journey. We finished up the first interview session with a design brainstorming discussion to learn their needs and gather their thoughts on potential design ideas and solutions.
Based on the problem understanding interview, we identified three key challenges that our participants had to deal with on a daily basis:
- It was hard to keep track of their mother’s testing results as well as medication across different medical service providers — “Everything in one place or either tie things together so that when things change, like there’s a new prescription or the appointments, there’s one place you go to, everything in there.” (P1 and P2)
- Caregiving expenses such as medication and full-time caregiver fees continued to add up — “You don’t realize how much it is until you start looking at your bank account, and whoo, that’s what I’ve spent!” (P1 and P2)
- The process of searching for financial assistance information and resources is time-consuming for family caregivers — “I still have a lot of calls that I need to make and do more research. Because we really need to get a better handle on the finances and make sure we’re not missing anything that is out there that can help us.” (P1 and P2)
Our goal for this project was to streamline caregivers’ information seeking and sharing processes. We used a participatory design approach to co-create solutions with our participants in the hope that family caregivers can save time and effort, so they can concentrate more on patient care and their own wellbeing.
Co-design Session: Storyboards & Paper Prototypes
Following our first interview with the participants, our team sketched out storyboards to contextualize the current challenges and the scenarios of our design concepts. After several rounds of brainstorming and discussions, we chose two concepts to further create paper prototypes of our potential solutions.
After completing our storyboards and paper prototypes, we invited our participants to join a remote, one-hour co-design session with us so we could share our design ideas via a Miro board. We started the session by sharing storyboards and reviewing our interpretations of the design challenges expressed by the participants. Then, we asked participants some questions regarding their thoughts on the problem statement and the potential solutions presented. We spent most of our time sharing and discussing the two design concepts and paper prototypes with our participants.
Our first proposed solution involved conceptualizing and designing an internal caretaker information portal for easy information and resource sharing among the family care team. For the second proposed solution, we designed an external information-seeking portal, which would consolidate relevant information for caregivers, thus making resources more accessible. Our participants responded positively to both solutions and provided us with valuable feedback. After the co-design session, we reevaluated our initial designs and implemented our final design concepts in high-fidelity prototypes.
Final Design Solutions
Solution 1 — Internal Information Sharing Portal
Our first solution is an internal information portal that the caregivers can use to keep track of information consolidation and sharing between members of the care team. This solution is aimed at addressing the large amounts of time, effort, and tools that are required in order for the two sisters to effectively operate as co-caretakers for their mother. As mentioned in the identified challenges section, our participants mentioned it being difficult to keep track of certain types of information such as test results, medications from different providers, important links, and so on. After working with our participants to understand the types of information they found it difficult to keep track of, we began to brainstorm ways to design an appropriate solution. Remembering that this was an area where we felt we could actually provide a tangible solution for them, we wanted to keep some important design considerations in mind. The solution needed to:
- Support flexible collaboration
- Be highly customizable to match changing needs and preferences
- Be intuitive and support our participants internal locus of control
- Be easily accessible and account for our participants busy schedules
Keeping each of these considerations in mind, we landed on using a tool called Notion to implement our solution. Notion is a collaboration platform that serves as an all-in-one workspace for note-taking, knowledge and data management, and project and task management. We decided to leverage this tool because it meets each of the design considerations mentioned above. It is highly customizable and flexible, it can be tweaked considerably based on changing needs and preferences, it keeps users in control of the system, and it lends itself well to a wide variety of schedules. As a group we also discussed leveraging our final version of this solution to create a “caregivers” template on Notion to make available for others to use and tweak for their unique situations and needs.
Feature 1: Medication List
The medication list page contains a table that is designed to allow our participants to keep track of all important medications and any important information associated with them that they would need to know or keep track of. Based on the information gathered from our participants, we included a column for the medication name, any general “about” information, statuses showing if it is an active medication or not, dosage, frequency of dosage, prescriber, and refill date. Participants also have the ability to delete or edit those columns as well as add any new ones as they see fit. A feature within each of our designed Notion pages, each row can be clicked and expanded into its own page to add further detail and information.
Feature 2: Task List
The task list page contains functionality allowing our participants to track the status of day to day tasks as well as stay informed on what each member of the caretaking team is doing, will be doing, or has already completed and when. Tasks can be created by those who have access and can be assigned to one or more people. Tasks can also include priority indicators, tags, and due dates as well as reminders. Notes and deeper levels of information can be added to each task via expanding the task into its own page. This page provides our caretakers with flexible viewing options to make the information intuitive and match any viewing preferences they may have. For example, the tasks can be viewed in a calendar view, by status, by an individual’s tasks, by the type of task, by assignee, via a timeline view, or by viewing all tasks that exist. Tasks can also be searched for through a search bar along the top right hand side of the screen. We included this page to specifically help keep members of the caretaking team informed of any and all tasks that needed to be completed and to make stepping in for one another and taking over another person’s tasks easier and faster to do.
Feature 3: Resource List
Our participants expressed to us how difficult it was to keep track of all of the different resources they have. Examples of such resources include having to keep track of doctors and their focus areas, insurance companies and what they can or can not be used for, nurses who come over to the house and perform specific duties, and websites or external portals such as MyChart for medical information. This resource list page is aimed to address the difficulties in keeping track of all of these things and more. This page allows our participants to keep track of all the people, organizations, and resources that they come across and use along with any important information associated with them they need to be aware of. In similar fashion with the medications list page, this page leverages a table to achieve its purpose. For the columns, we included the name of the resource, phone number, what role they play, some general “about” information, their status and whether they are active or inactive, their general or expected availability, a related website, and an email address. Again, each of these items can be opened into their own page to provide deeper levels of information and insights. New columns can also be added and old ones can be edited or deleted.
Solution 2 — Caregivers 101 Platform
Caregivers 101 is an external information sharing platform that aims to solve challenge 2 (caregiving expenses) and challenge 3 (time-consuming information seeking). Our goal is to provide easy access to financial resources and support networks for family caregivers. During our secondary research of existing solutions, we found that there were many helpful caregiving resources provided by government or private institutions, but the information might be unclear and overwhelming for users. As described by our participants, those websites and programs often require users to call for more information and submit lengthy applications to determine basic eligibility. Therefore, we used those challenges to guide the following design goals for ourselves to follow throughout the prototyping process -
- To provide easy access to caregiving information and resources
- To reorganize existing contents in a way that is simpler, easier to read, and makes more sense to our participants
- To allow users to navigate effortlessly through
- To connect family caregivers to share experiences and support each other
Also, we decided to use yellow as the key visual color for our Caregivers 101 platform because we want our brand to have a warm tone and convey heartwarming messages to family caregivers. The below image of the homepage includes our warm color scheme and an uplifting photo of a younger person caring for an older person who uses a wheelchair.
Feature 1: Caregiving Learning Course
One of the key features of Caregivers 101 is the caregiving courses. The page below includes content from existing websites as an example, which we cited in the “References” section, but we reorganized the content to model how it might make more sense to our participants.
Feature 2: Caregiver Communities
From the homepage, users can navigate to the Caregiver Communities page. This page serves as a hub for all of the various community features offered on the platform — networking, forums, and finding local events and/or support groups.
Final Prototype Feedback
During our second and final co-design session, our team shared the final prototypes with the participants via Zoom. The participants then provided feedback on our final design iterations. Overall, the feedback was overwhelmingly positive. The participants’ said they liked the Caregivers 101 color scheme and perceived the design to be a simpler option for information seeking. They also responded positively to the community features, but P1 commented that they would “like to see events for the community center” they frequently attend on the “Events and Support Groups” page.
How Effective Was Solution 1— Internal Information Sharing?
Our participants liked the flexibility of the system and specifically asked us to demonstrate how the pages and tables could be manipulated. After demonstrating for them, they expressed to us how important and helpful the pages and their functionality would be to them in their roles. They also appreciated the ability to expand each item into its own page to add more insights and detailed information. Despite this positive feedback, they did provide some helpful constructive feedback as well. They mentioned to us that the medication page, in our first iteration, did not provide the ability to track dosage, frequency, or provider information. After hearing this, we added this ability in our second iteration of the page. Our caretakers also expressed interest in being able to provide others with access to the notion pages but restrict that access to “view only”. Their reason for this is that they also have two brothers who live out of town and a nephew that lives in Maryland who sometimes come over to help with caretaking duties. They wanted each of them to be able to see all the necessary information, but not be able to edit it. This was an important area that we had not considered. We are currently exploring this area and hope to provide them with an effective solution in our third iteration of the notion solution.
How Effective Was Solution 2 — Caregivers 101?
Whether or not this solution, if implemented in the real world, effectively addresses the problem could not truly be determined given the scope of our project. However, participant feedback for the prototype suggests that the overall concept adequately addresses some of the caregiving challenges they may face. Primarily, the participants found value in the “Caregiving Courses” design because it not only provided “easier to digest” summaries of caregiving information, but also included links to helpful resources and tools related to the relevant course topic. Additionally, the participants appreciated the “Community Forums” design and networking features as a means of information seeking on a more personal level. In our problem understanding interview, the participants expressed that they did not currently participate in any support groups, but would like advice from other caregivers on some things they were still learning about, such as whether or not they would recommend using a specific professional caregiving service.
Regarding the “Events and Support Groups” page, our participants provided positive feedback, but also made comments that suggest Solution 1 more effectively supports their specific caregiving needs at the moment. For example, the “Events and Support Groups” page displays upcoming events or support groups that caregivers may want to attend. Our participants told us in our first interview that they often take their mother to events organized by a local senior center, but sometimes it can be difficult to find new activities to do with their mom. Also, as previously mentioned, they did not participate in or know of any local caregiver support groups. Thus, we designed the “Events and Support Groups” page with the hope of making that information more accessible to our participants. However, P1 mentioned that they would like to see events from the center they regularly go to. We theorized that caregivers could have more customized pages on the Caregivers101 platform if they created profiles, but if our participants already find Solution 1 useful, then that custom Notion calendar may be more valuable to our participants at the moment. So, our “Events and Support Groups” page design may benefit from some adjustments to the underlying functionality given the following design questions we now ponder — is it more valuable to provide a simplified searching interface or a customized page of events that may interest a specific user?
Reflecting on our design process and final solutions, several areas of improvement come to mind — the generalizability of our solutions, the sustainability of our solutions, and our execution of a participatory design process.
The generalizability of the designs is questionable given that we primarily used the personal experiences of one pair of caregivers to influence our design ideas. All caregivers that may use a resource like Caregivers 101 will have different needs based on their own unique caregiving experiences. A platform designed like Caregivers 101 may be generalizable regarding overall design features such as the simplified searching features and consolidated information, but the content and features provided in our prototypes were specific to our participants’ needs. Also, the designs cater only to the caregivers, so the people being cared for may not benefit from using our prototypes as they are. The same is true for the internal information sharing tool designed with Notion. The overall template and concept may be generalizable to other caregivers, but the specific features and pages we included were directly influenced by our conversations with our participants about their caregiving needs. Also, the Notion prototype may not be sustainable for our participants or most users. One of our team members knows the participants personally and may be able to provide occasional technical support for the Notion tool beyond the duration of the project, but we are not sure how user friendly that prototype is for someone that is unfamiliar with Notion.
When considering our participatory design process, many aspects worked well. Our participants were comfortable using Zoom, so we did not have any issues conducting our co-design sessions remotely. Conducting the sessions remotely also made it easier to record the sessions, with the participants’ consent, so we could then review their comments and feedback when generating design ideas. Contrary to what some of the team expected based on past experiences with participants, our participants were eager to talk with us and provided a surprising amount of feedback that was very valuable when iterating our designs.
Overall, our design process led to two prototypes that our participants found useful, but there are ways in which we could improve our participatory approach. Primarily, it would have been useful to conduct more co-design sessions with our participants, but we could not because of the project constraints of 3 co-design sessions. More meetings may have allowed us to get further along with our high-fidelity prototypes if we had the chance to gather more feedback and make more design iterations. Also, if we had more time, money, and expertise with creating platforms, we could have created a working prototype for our participants to interact with. We may have even been able to combine the two solutions into one giant platform for both the internal and external sharing of information among caregivers.
- Comfort keepers — Caring for Yourself While You Care for Others https://www.comfortkeepers.com/family-caregiver-study?st-t=google_&vt-k=caregiver%20support%20group&vt-mt=e&gclid=Cj0KCQiA15yNBhDTARIsAGnwe0VeUitpSFecjqujtrU2KZym02_2fgcYsCXwGnZmN1kpOT08Yz7AZmoaAqjLEALw_wcB&gclsrc=aw.ds
- Caregiver Media Group https://caregiver.com/articles/financial-caregiving/
- Caring.com — A Guide to Caregiver Finances https://www.caring.com/caregivers/finances/
- Paying for Senior Care https://www.payingforseniorcare.com/resources/locator_tool
We thank our classmates and participants for their feedback on this project. We also thank our professor, Dr. Hernisa Kacorri, for her encouragement and support throughout the process.