Antonia Yunge

During the transition between hospital and home, caregivers (family members and friends) of pediatric cancer patients experience an information overload and usually feel overwhelmed by the responsibility of adequately caring for their sick child.

Taking care for a patient at home requires organizing and keeping track of tons of information. In order to deal with this task, caregivers often improvise organization methods with what they have in hand.

“You want them to come home, but at the same time you are so scared” —Mother of cancer patient in remission

In order to better understand the context we interviewed and collaborated with a nurse and three mothers of pediatric cancer patients in remission. They shared their stories with us—with a special focus on the challenges of being a caregiver and the moment of transition—and showed us different ways in which they had organized everything they had to keep track of.

Based on our research, we started prototyping different ways to help caregivers with the task of taking care of a child with a complex disease. Our research participants had a vital role in providing the feedback that allowed to us improve our proposals towards our final product.

“Sometimes I had to track urine. How yellow it is, how much water did he drink and how much he is peeing. Because if it is not much then it means he is dehydrated” —Mother of cancer patient in remission

The Caregiver’s Journal is a tool that aims to assist caregivers in their journey of taking care of a child with cancer, especially in hospital-home transitions. The goal is to reduce uncertainty, stress, and anxiety, and to restore a sense of control by building self-efficacy.

The Journal contains multiple pages with information and templates for caregivers to understand and keep track of their child's condition. It is customizable, easily transferable between multiple caregivers, and useful throughout the entire process.