Pediatric Cancer Patients' Treatment Journey: Child, Adolescent, and Young Adult Cancer Narratives.

PURPOSE: The National Cancer Institute has acknowledged that for children, adolescents and young adults (AYAs), cancer is a leading cause of disability and death. This population has unique needs and until we fully understand those needs, we will not be able to provide optimal care. The purpose of this study was to understand the self-reported experience of cancer according to children and AYAs. DESIGN AND METHODS: A qualitative descriptive design was used. After obtaining IRB approval, participants were interviewed in Spanish or English. Thirty interviews were conducted with children and AYAs ages 10-22. Questions were asked about the patient's treatment journey and the impact on their lifestyle. The interviews were recorded directly in digital audio files, then transcribed using Verbal Ink®. Themes were derived after the data were organized using Dedoose® and then coded. RESULTS: Children and AYAs described the cancer experience as difficult due to activity challenges and disconnection from school. Patients noted that their physical inactivity led to deconditioning. Children and AYAs reported storytelling as a way to cope with newfound disabilities. Patients reported that their illness allowed them to build closer relationships to family. Feelings on other issues arose, such as communication challenges experienced with transition from adult to pediatric hospitals. The value of altruism emerged as a way to provide purpose in their journey. CONCLUSIONS: Children and AYAs have particular concerns that the healthcare community needs to address. These qualitative findings have specific recommendations for practice.