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.