Title:
Designing Cancer Care for Kids, by Kids: Engaging Patients and Their Families
Designing Cancer Care for Kids, by Kids: Engaging Patients and Their Families
Author(s)
Bushehri, Yousef
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Abstract
This article presents a pilot study that employed a novel patient-centered methodology to understand how pediatric oncology patients experienced the care they received and to identify bottlenecks in the care processes. The experience of children receiving cancer treatment is remarkably different from that of an adult. Children may not grasp what their body is enduring and may lack the vocabulary to communicate their experiences. A cancer diagnosis impacts a child’s ability to go to school, their relationships, and their psychological development. Patients and families express frustration with the care they receive and report low satisfaction. Previous studies have had limited outcomes and success, leaving low patient satisfaction and frustration unresolved, which may be due to the tools and methods used. To address these problems in children’s cancer treatment, and identify opportunities for improvement, a multidisciplinary team partnered with often neglected stakeholders—the patients. By mapping care-processes to understand patient-flow, and engaging stakeholders by teaming up with them as research partners early in the process, a novel tool was developed that examined the clinical experience of those children. By focusing on how the children experienced the clinic, the tool used accessible language to collect time-motion data and qualitative data of the patient’s experience. The study found discrepancies between staff members’ perceptions and the children’s reports on both patient-experience and care-process inefficiencies. The experience of pediatric patients can often be misrepresented and incorrectly perceived by the adults with whom they interact. It is essential to partner with them to effectively solve their problems.
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Date Issued
2025-03
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Resource Type
Text
Resource Subtype
Proceedings
Rights Statement
Unless otherwise noted, all materials are protected under U.S. Copyright Law and all rights are reserved