The Hidden Lives of Families Facing Pediatric Cancer Through a Narrative Medicine Perspective

Abstract

Abstract With specific tasks to fulfill, physicians often interact superficially with patients and their families to provide health care in the form of diagnosis and treatment. They miss so-called hallway conversations that may contain important information about the patient and family’s mental and social well-being. How, then, are they able to comprehensively address the more cryptic effects of cancer therapy that are not directly related to their patient’s physical health? In this study, a team of pre-clinical medical students analyzed 120 narrative journals written over an 11-year period by 119 3rd and 4th -year medical students who shadowed patients and their families in the pediatric hematology/oncology department of an academic medical center. These students did not fulfill clinical duties but learned about the cancer experience by shadowing pediatric patients and their families. The goal of this narrative study was to analyze these journals for content that revealed experiences of patients and their families that are not necessarily recognized by the healthcare team. These students were often involved in the most intimate moments of the cancer journey: receiving bad news, witnessing a child’s pain, and dealing with the death of a loved one. These experiences allowed the students to describe reactions that are often unobserved using narrative writing. With this information, multi-faceted treatment plans that go beyond the physical health of the child can be developed that incorporate the more obscure psychosocial, mental, and emotional health needs. This narrative style may also serve as a novel strategy for future clinical rotations.