Understanding Parental Experiences Through Their Narratives of Restitution, Chaos, and Quest

Abstract

The purpose of this secondary analysis was to develop an enhanced understanding of the experiences of parents who have children in treatment for cancer. Data collected from 16 parents (12 mothers and 4 fathers) were analyzed using Frank's dialogical narrative analysis. Findings demonstrated that parents' experiences were represented in chaos, restitution, and quest narratives. Each of these narratives was only one instance of a very complex and changing parental experience that cannot be understood in isolation from the others. The holistic understanding provided by these findings contributes to a more comprehensive understanding of parental experiences of their child's illness and highlights the need for health professionals to invite conversations about parents' illness experience and attend to the specific narrative type parents are presenting to support them adequately. Additional research is required to develop supportive approaches for each narrative which takes into account the complexities of parents' experiences.

A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network

“…Ground-breaking analyses of patients’ illness narratives by Frank [19] resulted in the identification of three types of narratives that offer insights into how patients experience illness and provide constructive methods for quality improvement in healthcare. The definitions of these narrative types have since been expanded, based on their application to different chronic illnesses, such as chronic fatigue syndrome, childhood cancer and medically unexplained symptoms [13, 20–22]. The restitution narrative is the least frequent among chronically ill individuals.…”

“…The narrative type usually occurs in the early stages of a chronic illness, before its longstanding nature becomes evident [21]. Restitution can also include the acceptance of a “new normal”, which may include acceptance of a negative outcome or an unresolved chronic health concern [22]. The chaos narrative is characterized by the concepts that life will never get better and no one is in control.…”

“…The quest narrative is one in which the patient sees the illness/disorder as a challenge and an impetus for change and believes that something can be gained through the experience. Additionally, parental quest narratives emphasize the positive attributes of their child and their gaining new parental and advocacy skills as a result of the child’s illness [22]. …”

“…While these typologies provide a framework for the classification of illness narratives, they are often fluid with elements of more than one type found in the same story [19, 22]. The narratives may also transition from one type to another as the illness progresses or improves.…”

Life balance in adult healthy siblings of individuals with childhood cancer.

“…Though there is an abundance of literature that examines how having a child with cancer in the family influences the family unit, siblings are often overlooked in literature on effects of childhood cancer (Bally et al, 2014;Chesler & Barbarin, 1987;Coulson & Greenwood, 2012;Da Silva, Jacob, & Nascimento, 2010;Davies, 1983;Eapen, Mabrouk, & Bin-Othman, 2008;Long & Marsland, 2011;Ljungman et al, 2014;Murray, 2000;Ozono et al, 2010;Rollins, 1990;Schweitzer, Griffiths, & Yates, 2012;Wakefield, McLoone, Evans, Ellis, & Cohn, 2014;Warner, Kirchhoff, Nam, & Fluchel, 2014;Williams, McCarthy, Eyles, & Drew, 2013).…”