Self-care for Caregivers

In 2020, the UW School of Nursing piloted Managing Your Own Wellness (MYOW), a 12-week intervention program that benefits care partners (family members and friends assuming the duties of primary caregivers) of people living with dementia by helping them envision and build self-care habits. While the first cohort of care partners found MYOW helpful, several participants suggested improvements such as ways to review progress toward their self-care goals. Meanwhile, the clinical researchers wished to package the program into a product that could be used by more people over a longer period, with less intervention from healthcare professionals. Therefore, the clinicians partnered with our capstone team to develop the program into an engaging digital experience through human-centered methods.

Design Question

As MYOW is an intervention program, the experience spanned two stakeholder groups: care partners who participated in the program, and clinicians who administered the program. Each group had its own specific needs and expectations.

Thus, our guiding question became: How might we empower care partners to create and reflect on self-care practices while working within the intervention structure developed by the clinical research team?‍

We used a double diamond approach to research, define scope, ideate, and validate our design.

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We utilized various research methods to review the as-is experience of care partners in the MYOW program.

Over four weeks, we took part in daily tracking as if we were care partners in the MYOW program. We received daily emails containing links to tracking forms generated by REDCap, the online research portal used by the clinicians. We evaluated this experience against usability heuristics and concluded that though the current experience was simple and consistent, it was also rigid, fragmented, and impersonal. For example, the tracking forms became inaccessible once submitted, leaving care partners without a sense of trends or contextual cues that could help inform their self-care practices.

Competitve Analysis

We surveyed both commercial products and academic resources to learn how they have created unified experiences around setting, tracking, and reflecting on goals. We identified several common strategies that we can potentially apply to the MYOW program.

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Throughout the MYOW program, the clinical research team collected participant data through questionnaires, daily tracking forms, and recorded interviews. We probed into the participants’ experiences both within the program and in their daily life. Our key takeaways include:

1. Creating and evolving an effective self-care goal was essential to the success of the program, and the clinicians’ guidance was instrumental.
2. Care partners valued the instructive guidance, sense of accountability, and supportive interaction provided by the weekly interviews.
3. Care partners suggested improvements to the program such as review functions, personalization options, and a more private way to log data.

The As-Is Care Partner Experience

We synthesized our understanding of the care partners’ as-is caregiving and MYOW experience into a user persona and a user journey map.

We conducted further research to explore: what do care partners need from the MYOW program, and what do clinicians need to administer it?

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Building upon our review of care partners’ as-is experience, we conducted semi-structured interviews with 3 participants to further explore their needs and expectations for an enhanced MYOW program. Our key takeaways include:

1. Monitoring progress: in past experiences with personal tracking, care partners described units associated with their goals (e.g., weight lifted, time spent walking) as providing helpful context about their progress.
2. ‍Having boundaries: care partners valued the finite timeframe of the MYOW program and kept their self-care goals mostly private. This negated our idea of a community feature as a means of accountability, emotional support, and partial stand-in for clinician guidance.

Clinicians

Before kicking off our project's design phase, we hosted a design sprint workshop with the clinical research team to elicit their needs and brainstorm possible innovations.

We concluded on 3 high-priority solution ideas for the MYOW program:

• Provide care partners with resources and structure to develop self-care goals, including ways to measure success and integrate self-care into existing daily routines.
• Ensure goal-tracking is easy to rememberand close at hand.
• Allow care partners to review progress toward their self-care goals.

Defining Needs and Project Scope

As we defined the needs of both care partners and clinicians regarding the MYOW program, we identified stages in the protocol where these needs intersect.

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Thus, we narrowed down our project scope to a companion mobile app for the MYOW program that enables care partners to:

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• set a self-care goal;
• log their efforts toward the goal;
• and review their progress over time.

Design Principles

We developed a set of design principles that addressed the needs of both our stakeholders and served as our touchstone moving forward.

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We employed an agile and iterative ideation process to develop low-to-mid fidelity prototypes while frequently seeking feedback from both our stakeholders.

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To check the assumptions we made in low fidelity prototypes and explore new design opportunities, we conducted individual co-design sessions with 4 care partners, 2 of whom participated in the MYOW program.

Through these sessions, we learned that:

Each week, we met with the clinical research team to share our progress, solicit feedback, and check our assumptions against their domain expertise. For example, care partners had mixed reactions to the emoji scale that accompanied daily tracking. The clinical research team suggested the “bucket” metaphor that they used in clinical practice to elicit similar self-assessments from care partners.

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We tested our mid-fidelity prototype with three care partners and iterated on our design according to their feedback.

Remove congratulatory messages; convey warmth through visual design instead.

Simplify the logging flow and replace the unintuitive self-rating scale with a simple yes/no question.

Emphasize the most meaningful functions: notes and daily summaries.

Simplify the insight infographics.

Final Design

In progressing from mid-fidelity to high-fidelity designs, we focused on the sequences that are most integral to the MYOW program: the daily logging flow and the summary of progress toward self-care goals. Through these flows, care partners can monitor and understand variations in their self-care practice and also appeal to a shared artifact during weekly check-in calls with clinicians. Check out our prototype here:

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HCD Playbook and Future Work

Our sponsors were impressed by the robustness of Human-Centered Design and the results it produced. They wished to advocate for it in future developments of the MYOW program. Therefore, we created an HCD playbook for clinicians organized around the structure of the MYOW program to help ground our design explorations in the context of their own material, unfold our decision-making processes, and suggest human-centered ways to continue evolving the intervention. We detailed each HCD method we used in a more general and educational sense, and provided resources that can be leveraged in our absence.

We also suggested prioritized stages of future work for our sponsors:

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The strengths of this project lie in our thorough research and detailed exploration of many different design opportunities. Yet ultimately, feedback from care partners directed us toward a lightweight sequence for submitting and summarizing progress towards a goal. This was apparent in hindsight, given the care partners’ time constraints and their expressed informational needs. However, we took a detour, which can often be the case when navigating ambiguous spaces. Had we started with a bare-bones approach and only increased complexity as needed, we may have been able to conduct more thorough testing and iteration on a lightweight logging/reviewing experience. Additionally, our final design was elastic enough to apply to many personal tracking situations. With a tighter scope that restricts our proposed solution solely to the demographic of the MYOW program, we could have perhaps leaned more directly into the specific informational needs of care partners for people living with dementia.

Throughout this project, it became clear that the MYOW program was a multi-modal experience comprised of many touchpoints across physical and digital spheres. We originally thought to decrease this overlap, attempting to reduce the amount of 1:1 interaction with the clinicians. However, our research strongly indicated that human interaction was a key differentiator and value-add of this program for care partners. Thus we saw the care partners’ interaction between the digital interface balanced with the aspect of human connection, which was integral to the intervention and, more broadly, the field of nursing in which this program was established.

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