Research and design of technologies for collaborative cancer care.
I am currently leading a research study to understand how caregiving challenges evolve over the course of the cancer journey. The research aims to build upon existing literature to establish caregiving best practices in the context of cancer. As part of a six-person research team, my key contributions span from conducting usability tests to analyzing user data, and designing high-fidelity prototypes.
Our lab's earlier work has identified five Family Adaptive Systems (FAS) based on the Family Resilience Theory. These systems characterize the adaptability and navigational processes families deploy throughout their cancer journey.
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We conducted a total of 26 semi-structured interviews with families whose child was hospitalized for cancer treatment including patients at Riley Hospital for Children. The parents had children ages ranged between 3 - 15 years and considered themselves primary caregivers.
The interviews were coded using three themes
Over 200 pages of transcribed conversation were themed using Atlas.ti to highlight concepts concerned with challenges, potential solutions and feedback on conventional features.
The interviews were run through three rounds of coding.
The outcome of this study was a set of challenges, design features and feedback categorized under each adaptive system.
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The objective with making personas and scenario was to establish a
We created a persona for a family of four whose daughter was undergoing chemotherapy. We established the biography, goals, and pain points for each of the four members of the family.
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Five scenarios were created from the most important systems ( Information, Management and Control ). The scenarios aimed at empathizing with the problems outlined by the caregivers in the interviews and also visualize potential solutions to the outlined problems.
The research study I am leading aims to
We employ a methodology known as Q-sort, a technique commonly used in psychology and social sciences to group similar user types together based on their preferences.
The ideation phase was divided into two phases
“And you want to give yourself hope by saying, okay, this is going to save the child, this intervention is going to be helpful.You continuously want to believe in these things. And this is at the top of your mind when this is ongoing. It’s just a lot of things happening.”
- Father, Family 5
The main focus of the prototyping design was reducing the complexity and information that a parent had to go through. As an example for the homepage
Using insights from feature prioritization and ideation, the final prototype contains the following features
A subset of all the features were chosen based on the following criteria
Priority of features
based on a combination of quantitative data ( ranking from the card sorting study ) and qualitative data ( feedback from transcripts of card sorting sessions and interviews ).
Importance of the feature system
to which the feature belonged. The most important systems where the Management and Control and Information systems.
Conformity
Some features were deemed important but users preferred that there would be another application for them ( Financial tools ).
The prototype has currently been tested with 8 participants. The testing is currently ongoing, we are testing for the the following
This research has the potential to improve caregiver collaboration and reduce burden.
