Understanding the challenges caregivers face when transitioning their child’s cancer care from hospital to home
My current role with the Indiana CTSI involves conducting patient-centric healthcare research aimed at uncovering challenges in healthcare services & delivery.
I worked with cancer-caregivers and healthcare providers at researching the challenges caregivers face when transitioning home with a child with cancer.
The goal of this project was to formulate a new “Transition from Hospital to Home (TH2H)” strategy that centers around real caregiver experiences and informs future research and care practices.
Year
2025
For
Indiana CTSI
Role
Healthcare UX Researcher
The Problem
The transition from hospital to home is one of the most demanding phases in a child’s cancer journey - especially for caregivers who need to balance medical, emotional, and everyday responsibilities. They navigate complex treatment instructions, emotional uncertainty, and the pressures of maintaining stability for their family, often with limited support.
Here are some of the challenges they experience -
Caregivers often make mistakes with medical regimens. This leads to unsafe med and nutritional interactions.
The child still has 8-12 months of continued recovery & treatment with regular check ups.
Parents/ Caregivers need time to get adjusted to their new reality.
Having to deal with inconsistent access & availability of social aid services for their child.
Growing financial challenges create a lot of stress.
Some parents/caregivers have more than one child to also care for. All of a caregiver's attention on one child, leads to imbalances in family dynamic.
Project Objectives
AIM 1 : Identify Key Components of the Transition From Hospital to Home using Human Centered Design Research Methods
Research Process
To understand the lived realities of families navigating a child’s cancer journey, we designed a parallel and comparative research study involving two key groups: 14 caregivers of children with cancer and 10 pediatric healthcare professionals -including oncologists, nurses, and social workers - directly involved in the hospital-to-home transition process.
Our approach sought to uncover insights from both perspectives, recognizing that caregivers and healthcare providers experience the same transition differently. Caregivers grapple with the emotional and logistical weight of managing complex care routines at home, while clinicians must balance providing information, reassurance, and follow-up continuity within constrained systems of care.
To capture these experiences holistically, we mapped the journey across five key milestones:
Beginning of Admission – establishing expectations, communication patterns, and the first exposure to the hospital care system.
Few Days Before Discharge – identifying gaps in preparedness, emotional readiness, and confidence in managing care independently.
Discharge Day – understanding how information, resources, and support are transferred from the clinical team to the caregiver.
First Day at Home – examining the immediate realities and challenges of adapting clinical care to the home environment.
Clinical Follow-up 1 – exploring how early experiences shape long-term confidence, stress, and continuity of care.
Throughout this process, caregiver and provider narratives were studied side by side, allowing us to identify intersecting pain points and disconnects in expectations, communication, and emotional support.
This dual-lens framework helped us move beyond isolated experiences to reveal systemic insights - such as where clinical handoffs falter, how emotional reassurance is inconsistently provided, and what tools or resources caregivers wish they had at each stage.
Research Methodology
Our research followed a divergent–convergent framework, a common human-centered design approach that allows teams to first explore a broad landscape of experiences and then synthesize them into focused insights and priorities. This structure ensured that both caregivers and pediatric cancer specialists were given equal opportunity to express their perspectives before aligning on shared priorities for improving the hospital-to-home transition.
AIM 1 : Identify Key Components of the Transition From Hospital to Home using Human Centered Design Research Methods
Market Opportunity
A new generation of fans—digital-native, data-curious, and globally connected—engages with racing as both sport and storytelling. These fans want context, insight, and interactivity beyond traditional broadcasts. With over 500 million motorsport enthusiasts worldwide and rapid growth in younger demographics, there is a clear opportunity to serve this audience with richer, more unified digital experience