Designing Cancer Caregiving Collaboration Interventions

We derived features & contextualized them for caregiving collaboration using a conceptual mobile app prototype. This project is part of a Ph.D. Dissertation funded by the National Science Foundation (Grant No. IIS-2047432 & IIS-1850273) in partnership with Riley Children's Hospital based in Indianapolis.

MY ROLE

Conducted qualitative interviews, participatory design sessions, and card-sorting sessions with participants. Was part of the team while brainstorming and finalizing features. Took the lead on designing high-fidelity mobile prototypes with multiple iterations based on feedback.

PUBLICATIONS

"I feel like I need to split myself in half": Using Role Theory to Design for Parents as Caregiving Teams in Hospitals

Designing for Families as Adaptive Systems: Collaborative Emotional Support and Resilience in the Children's Hospital

DURATION

2 years

TEAM

Dr. Sarah Nikkhah (Lead Researcher), Dr. Andrew Miller (Principal Investigator), Dr. Emily Mueller (Medical Collaborator), Akash Rode, Barsa Tandukar, Geetha Priya & Priyanjali Mittal

PROBLEM

Each year, the parents of approximately 15,300 kids will hear the words… 
“Your child has cancer”

When a child is hospitalized with a serious illness, family members must process a lot of stress and play a vital role in coordinating their child's care. The aim of this study was to answer the following question, "How can technologies support family resilience processes in families undergoing stress in an acute crisis?"

RESEARCH OVERVIEW

Research Aims

Families

Identify caregiving composition and characterize families’ coordination practices, challenges and stressors, and existing technology use across the cancer journey.

Context & Domain

Identify the right theoretical framework to map the stressors to the resilience processes and adopt it to uncover the family resilience processes that help these families tackle the health crisis of having a child with cancer.

Opportunities

Explore the design opportunities and access the Family Adaptive Systems (FAS) framework's ability to guide the future of collaborative technologies to support processes for crisis management and collaborative care.

Design Implications

Utilize FAS in the codesign process to envision the design implications for future collaborative technologies to support FR processes for families with hospitalized children with cancer.

Data Collection

Qualitative Interviews

Identified caregiving composition and characterized families' coordination practices, challenges/stressors, and existing technology use across the cancer journey

Interviewed 14 families from Riley Childrens Hospital

Criteria - Purposeful sampling - having a child hospitalized within the past year

Analysis - Conducted iterative thematic analysis, journey mapping, and deductive coding using cancer journeys

Design-focused Interviews

Identified the right theoretical framework to map the stressors to the resilience processors, which was the Family Adaptive Systems Framework (FAS)

Interviewed 12 parents from Riley Childrens Hospital

Criteria - Purposeful sampling - child hospitalized within the past year and diversity in demographic background

Analysis - Deductive coding using social theories as a guiding framework - Social Support Theory, Role Theory, Ecological Systems Theory

Deductive coding using Family Resilience Theories - Walsh’s Family Resilience Framework, Family Adaptive Systems Theory

Card-sorting Sessions

Utilized FAS in the codesign process to envision the design implications for future collaborative technologies

Interviewed 11 parents from the online platform UserInterviews.com

Criteria - Purposeful sampling - having a child hospitalized within the past year

Analysis - Thematic analysis, empathy mapping and affinity mapping

Family Personas

IDEATION

Crazy 8s

Feature List

FINDINGS

Emotion System

“We don’t have time, and we don’t want to leave him... We don’t have that luxury. If we did, then maybe we would go and have a date night …” (F1M). 

"I feel like I need to split myself in half." (F4M).

Control System

“I would make a checkmark in it when I gave that.’ ‘So then I didn’t have to freak out all the time like, ‘Oh, my gosh. Have I missed the timing?’ In med, I could just go to the chart and go; I don’t have to do this till four o’clock. I don’t have to worry about this for a while instead of stressing out.” (F3M)

“So on the calendar, I’ll write don’t forget, and then I’ll write a list of things, don’t forget. Or I’ll text him [Dad], don’t forget this. I’ll text him to make sure he’s up in the morning, and I usually try to take a break and go outside and try to get a hold of him” (F6M)

Meaning System

"When [the hospitalization] first started, we kind of all went as a family." (F4M).

“We have an extra special bond he and I have because we know what the other one’s been through.” (F8M).

Maintenance System

"I’m just not going to work until all of this is said and done. … Money is an issue up here because I’m not working... " (F7M).

Information System (New)

“It would be nice to have some sort of platform where we could communicate. Maybe on the rounds… [mom] and I could view it, screenshot to grandma and grandpa, whoever it might be.” (F5D).

“Why couldn’t there be a little transcript of morning rounds? … And then she would know that, and it wouldn’t have to be a problem with us trying to track things down.” (F1D).

PROTOTYPE EXPLORATIONS

Final Prototypes

Stay updated with Lisa's daily schedule, caregiving tasks, medical notes

Huddle for caregivers to collaborate on Lisa's caregiving needs and document progress

Huddle provides caregivers with the ability to make audio and video calls to share important updates or milestones with family members. During these calls, caregivers will be able to take notes and assign tasks so the calendar is updated. They get timely reminders to complete important tasks related to the hospitalized child, work, or home. 

The Huddle will also generate a summary of the call so anyone who might have missed it can listen to it and stay aware and updated.  A huddle can also be scheduled ahead of time to let others know the agenda and be prepared for it. For example, to stay more connected within the family, a game night is scheduled occasionally so that the families can stay connected and hospitalized child doesn’t have the feeling of isolation.

Staying connected with each other using private and group messaging

The messaging feature focuses on all of that along with characteristics that will be tailored to feed the needs of a caregiving circle that is taking care of a child undergoing treatment for pediatric cancer. 

Staying on top of schedule by managing Lisa's medical calendar for appointments, visits and routine activities

The calendar, although a simple feature and integrated into every iOS and Android phone, was something we wanted to customize to the needs of caregivers. This calendar identifies who might be the best person to accomplish a task depending on their schedule that day. It will identify intertwined calendars and notify the user.

Managing Lisa's Digital Medical File

Managing documents and medical information focuses on curating a digital version of a medical file which is stored on a secure cloud service. In the most simple way, this information can be categorized and customized by creating a file hierarchy using folders such as lab results, medical prescriptions, visit notes, multimedia documents, and more. A structure of nested folders is provided to caregivers, which can be customized later based on their preferences. 

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LETS CONNECT!

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