“As long as you need me I’m yours.” Caregiving for a pediatric cancer survivor

Abstract

A pediatric cancer diagnosis is devastating – to children, as well as their families. Children experience a variety of negative effects, whether physical, cognitive, and/or emotional, and often face continued or newly developed effects l past remission termed late effects. However, it is imperative to note that support persons, or caregivers of survivors of pediatric cancer, are also affected by their caregiver roles as they help their survivors cope with their late effects. This study aimed to understand how caring for pediatric cancer survivors influences facets of caregivers lives. Nine primary support persons of pediatric cancer survivors (as chosen by the survivors they care for) participated in one-on-one, semi-structured interviews, in which they discussed their roles in caring for a pediatric cancer survivor, and how being a support person has affected their lives. A total of four themes emerged from the research, but for the purposes of this paper only the theme “As long as you need me I’m yours” will be discussed. From
this theme, two subthemes emerged: (1) “Do their effects affect me?” and (2) “You realize what’s important and it sticks with you.” Support persons experienced negative emotional and cognitive effects, such as worrying or feelings of anxiety for their survivors, but also admitted to finding silver linings in their experiences. As well, caregivers expressed that they have developed stronger relationships with their survivors and family, in addition to developing newly optimistic outlooks on life. This work provides valuable information for policy makers and health care professionals to ensure that adequate supports and resources are available to caregivers for the multifaceted needs they may have in supporting pediatric cancer survivors.