Development of a resource for parents with advanced cancer: What do parents want?

Abstract

Objective: Parents coping with a diagnosis of advanced cancer experience distress and guilt about the impact of the disease on their children but report that there are few resources specific to advanced disease to guide and support them in discussions with their children. Although some resources have been developed to assist parents with advanced cancer, it appears that these are not widely disseminated.Methods: To determine the need for a brief resource that could be given to parents at the point of diagnosis of advanced cancer, including its content, in-depth interviews were conducted with eight women with advanced breast cancer.Results: Women confirmed that they had received minimal assistance from health professionals in discussing the diagnosis with their children, and even when professional counselors were accessed they were not always attuned to the specific needs of parents with advanced cancer. Women felt frustrated that information they did access focused on early disease and lacked the details women felt they needed in coping with advanced cancer. Women felt that there was a need for a brief resource that reassured parents about the impact of the cancer on their children, including practical strategies to help them cope and examples of the ways other parents had responded to difficult questions such as about parental death. A draft resource was developed, critically reviewed by the participants, and their comments incorporated into a final version.Significance of results: This article expands on the themes highlighted by women as important to assist parents with advanced cancer, including the final resource that was developed.