Abstract

Improvements in the treatment of pediatric cancers, including malignant brain tumours, has resulted in more children surviving this illness well into their adolescent and adult years. It is widely known that survivors of brain tumours often experience long-term side effects of cancer treatments and/or the disease itself. These long-term effects often impact the survivor’s physical, psychological, or social wellbeing and can present significant challenges for the individual as well as for their family. Research on the experience of parents following treatment for their child’s malignant brain tumour is more limited, despite many parents being a central caregiver and source of support in the survivor’s life. The goal of this hermeneutic inquiry was to better understand parents’ experiences of having a child survive a malignant pediatric brain tumour, how interactions with the health care system have shaped the child and family’s experience, and how the survivorship experience can be improved for patients and their families. Semi-structured interviews were conducted with the parents of seven pediatric brain tumour survivors to inform understanding of the topic. Data were analyzed in hermeneutic research tradition, as influenced by the philosophical hermeneutics of Hans-Georg Gadamer. Findings revealed that, survivorship was an enduring event and one that defined many aspects of parents’ lives, including daily routines and plans for the future, parents struggled to achieve a balance between independence and dependence, especially for survivors who were more severely affected by cognitive, psychosocial, and emotional side effects, survivors and parents felt left behind by multiple systems including health care and education, as well as by peers and in other relationships, parents experienced a repetitive, cyclical nature to survivorship, described as being “frozen in time,” and survivorship was a period of time wrought by emotion, with guilt, regret, and remorse being highlighted. For parents of PBTS, survivorship is highly complex, emotional, and cannot be navigated in isolation. It is expected that the in-depth understanding of parents’ experiences provided through the written interpretations in this study will lead to future research with families of PBTS and for other related populations and contexts.