"Don't Try to Cover the Sky with Your Hands": Parents' Experiences with Prognosis Communication About Their Children with Advanced Cancer.

BACKGROUND: Physicians worry that disclosure of prognostic information can be distressing and deprive families of hope. Retrospective studies have shown that prognostic disclosure does not abrogate hope, but prospective data are lacking. OBJECTIVE: The study objective was to prospectively evaluate responses to prognosis communication among parents of children with advanced cancer. DESIGN: For this qualitative study we audiotaped conversations between clinicians and parents of children with newly relapsed or refractory cancer, and then interviewed parents about experiences with prognosis communication. Parents were asked to reflect on physician statements about prognosis. SETTING/SUBJECTS: Subjects were 32 pairs of parents and clinicians of children with relapsed or refractory cancer treated at Dana-Farber/Boston Children's Center for Cancer and Blood Disorders, Boston, Massachusetts. RESULTS: Prognosis was discussed in 28/32 conversations (88%). Although most parents (N = 22, 69%) found prognostic information upsetting, most also valued honest communication about prognosis (N = 22, 69%.) Parents noted that frank disclosure fostered hope by relieving uncertainty and allowing them to make the best possible decisions for their children. Excessive optimism or a lack of information, in contrast, was sometimes experienced as a threat to hope and the parent-clinician relationship. A minority of parents were upset by clinician communication about prognosis (N = 4, 12%), but most did not consider the clinician responsible for their distress. Rather, parents attributed distress to the difficult situation. CONCLUSIONS: Many parents consider prognosis communication to be both difficult and necessary. While upsetting, prognostic information engenders hope by helping parents feel prepared to do their best for their children in the difficult days to come.

Parental hope for children with advanced cancer.

BACKGROUND: Previous work suggests that parents of children with cancer can remain hopeful despite receiving prognostic information, but we know little about what hope means to such parents, or the extent to which parents can feel hopeful even while facing the child's impending death. METHODS: We audiotaped conversations between clinicians and parents of 32 children with relapsed or refractory cancer, and then interviewed parents about their hopes and expectations for their child. RESULTS: Parent statements about prognosis in interviews mirrored those made by clinicians during discussions about the child's diagnosis with refractory or relapsed cancer. Clinicians used language referring to hope during these conversations but did not ask parents directly about their hopes. Parents expressed a range of hopes for their children, from hopes related to cure or treatment response, to quality of life, normalcy, and love and relationships for the child. For most parents, expectations about prognosis were not aligned with their hopes for the child; for example, many parents hoped for a cure and also reported that they did not believe cure was possible. Many parents were able to acknowledge this incongruence. CONCLUSIONS: Parents accurately conveyed the reality of their child's serious condition in the setting of advanced cancer, and yet maintained hope. Hopes were not limited to hope for cure/treatment response. Clinicians should be encouraged to engage in direct conversations about hope with parents as a means to elicit realistic hopes that can help to focus the most meaningful plans for the child and family.

Research participation experiences of parents of children with cancer who were asked about their child's prognosis.

BACKGROUND: In questionnaire-based research, human subject protection committees must assess the emotional impact of the study on participants. Without clear data about the risks and benefits of participating in such studies, however, review board members must use personal judgment to assess emotional harm. OBJECTIVE: To examine experiences of distress and value of participation in a study of prognosis communication among parents of children with cancer, and to identify factors associated with predominantly distressing research experiences. METHODS: We surveyed 194 parents of children with cancer (overall response rate, 70%), treated at the Dana-Farber Cancer Institute and Children's Hospital, Boston, Mass, in the first year after the child's cancer diagnosis. The survey focused on the child's prognosis and parent-physician communication; at the end, we asked parents how distressing and how useful completing the survey had been to them personally. RESULTS: Only 1% of parents found research participation to be "very" distressing. The majority of parents were "not at all" distressed by participating (62%), and most reported that the questionnaire was at least "a little" useful to them personally (69%). Overall, 18% of parents gave higher ratings for distress than for utility. Parents were more likely to experience research participation as predominantly distressing when they found prognostic information to be upsetting (odds ratio [OR] 5.38, p=0.005). CONCLUSION: Most participating parents were able to respond to questions about their child's prognosis with little or no distress. Even when distress was present, it was often accompanied by a perception that participating was of value.