Constructing the Meaning of Survivor With Former Pediatric Brain Tumor Patients

Abstract

Although the term survivor is frequently used in cancer discourse, the meaning of survivor and how people identify with this term can be difficult to understand. The purpose of this qualitative study is to explore the meaning of the term survivor from the perspective of young adults who have experienced a pediatric brain tumor (PBT). A constructivist grounded theory was utilized in this study with 6 young adults who had a PBT. This study also used semistructured interviews with participants who also completed reflective journals, which were focused on the survivor concept. Data were analyzed through coding strategies and constant comparative methods. Findings present 4 major themes of process: (a) reviewing the illness experience, (b) qualifying as a survivor, (c) thinking positive, and (d) being changed. These themes are important to consider in the construction, interpretation, and understanding of how the majority of this population do not identify with the current social use of the term survivor. Clearly, there is a need for a clearer understanding of survivor and how it specifically applies to those who have had a PBT. Everyone should remain conscious and consider how a broad, generalizing term such as survivor may influence a person's attitude and advocacy toward their health.

Identification of Evidence for Key Positive Psychological Constructs in Pediatric and Adolescent/Young Adult Patients with Cancer: A Scoping Review

“…Survivors of cancer described how body image changes and perceived changes to their social reputation among peers 65 were factors which decreased personal growth. Depression 66 and stress 67 also played a role.…”

Families’ experiences of child and adolescent brain tumor: A systematic review and synthesis of qualitative research

“…body looking and acting different compared to how it was before their symptoms began. 17,20,56 These changes included weight gain or loss, 32,38,39,50 hair thinning or loss, 22,54 small stature, 17 scars, 22 onesided paralysis or limited mobility, 50 and using a wheelchair or hearing aid. 30,54 For some survivors, these changes served as constant reminders to themselves and to others that they had or have a brain tumor.…”

Existential experience of children with cancer under palliative care

“…Being with cancer is for the children and their family to experience daily an overload of negative feelings and emotions, is to have the uncertainty of a future and the certainty of finitude, which every day seems closer. Therefore, the anguish of living in favor of a disease without therapeutic possibilities of cure associated with the suffering resulting from the treatment causes the need for a care that allows the children to feel full again in the face of their limitations, that is, that it has a Palliative Care assistance (16) .…”

“…The impact of the disease on experience brings anxiety in children and thus the feeling of impotence and not being prepared for what will come becomes stronger from the moment the children expresses their sensitivity (16) . As a result, it is essential that palliative care be extended to parents and their families throughout the care process, even after the child's death and more intensely (3) .…”