Background: Making major treatment decisions with life-altering consequences is a significant challenge faced by parents of children with cancer. The unique experience of parents is not well represented in the growing literature on cancer treatment decision making (TDM).
Objective: The objective of this study was to describe the process of parents making major treatment decisions for their children with cancer.
Methods: Using grounded theory methods, we interviewed 15 parents of 13 children with cancer facing major treatment decisions.
Results: Parents’ determination to make the right decision was both a demanding responsibility and a natural extension of the parental role. Everything parents encountered and undertook during the TDM process was in the service of making the right decision for their child. All parents expressed conviction that they had made the right decision, but conviction was tempered by doubts triggered by the pervasive uncertainty of the childhood cancer experience. Parents described limited TDM participation by extended family members and the affected children themselves, asserting their primary responsibility to act as their child’s surrogate in partnership with the child’s medical team.
Conclusions: Making the right decision for one’s child under challenging conditions is an extension of the parental obligation to act in the child’s best interest and a responsibility that parents claim as their own.
Implications for Practice: The findings from this study can serve as the foundation for future studies to refine the conceptualization of TDM in childhood cancer, which will in turn ground the development and evaluation of interventions to support parents in their critical TDM role.
Author Affiliations: Department of Health Promotion and Development, University of Pittsburgh School of Nursing, Pennsylvania (Dr Stewart); Center for Nursing Excellence, Lucile Packard Children’s Hospital of Stanford, Palo Alto, California (Ms Pyke-Grimm); and Department of Nursing Research and Quality Outcomes, Children’s National Medical Center, Washington, DC (Dr Kelly).
This study was funded in part by an American Nurses Foundation research grant (Dr Stewart, principal investigator).
The authors have no conflicts of interest to disclose. Correspondence: Janet L. Stewart, PhD, RN, University of Pittsburgh School of Nursing, 3500 Victoria St, Room 440, Pittsburgh, PA 15261 (firstname.lastname@example.org).
Accepted for publication November 20, 2011.